Caring for Parents with Alzheimer's & Dementia

Parent Q&A

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  • Hi there, 

    My mom who lives with us most of the year in Berkeley has early stage frontotemporal dementia and needs a local neurologist. Any recommendations for folks with a dementia or geriatric cognitive focus? She's been a bit resistant to go, it will need to be someone calm, thoughtful, and kind. We're also looking for speech therapy providers with this specialty as well.

    Thank you for any leads!

    UCSF Memory and Aging Clinic may be able to help:   https://memory.ucsf.edu/services/memory-and-aging-center-clinic

  • Dearest Berkeley parents,

    I am reaching out specifically to parents who are knowledgeable about Assisted Living/Memory Care facilities in the area.

    My mother has recently received a dementia diagnosis and has limited savings that will cover about 2-3 years of Memory Care in a facility. She will need to apply for Medicaid after her savings are depleted in order to continue to receive care until end of life.

    What memory care facilities within a 50 mile radius of Berkeley take Medicaid? (For some reason, this simple information is difficult to ascertain.)

    Does anyone have first-hand experience with their parents being cared for in a facility that accepts Medicaid for payment? If so, please share your experiences and names of homes.

    Thank you!

    -Berkeley parent and member of the sandwich generation

    Hi Erin,

    I sympathize with you and the thousands of others who are or will soon be in your situation. We are unfortunately not equipped in our country to care for people who need it. Medi-Cal does not pay for memory care or assisted living, in general, unless you are able to get onto and then off of a multi-year waiting list for the Assisted Living Waiver. Here's a link to some info. I think the best thing to do is to consult an elder care attorney; they can sometimes help with figuring out a plan. 

    https://www.dhcs.ca.gov/services/ltc/Pages/AssistedLivingWaiver.aspx

    www.canhr.org

    https://sgrlegal.net/ (she is excellent)

    https://absolutetrustcounsel.com/can-medi-cal-pay-for-dementia-care/

    My understanding is that once a person only has Medi-Cal (state of California’s version of Medicaid), that only covers a custodial bed in a skilled nursing home (SNF). Medi-Cal basically pays for the room and the facility becomes the person’s long-term home. It is challenging to secure one of these beds because the SNFs don’t have many of them, patients don’t turn over often and they are in such high demand. My thought is that after securing a memory care facility now, you will have to work on finding a custodial bed at a SNF down the road when the funds are depleted. 

    Look into the PACE program.  It's a comprehensive, Medical funded program with wrap around services. There are assisted living and memory care places that will take private pay patients and then transition to the PACE program once the patient has expended their own resources.  Sometimes it's easier to get into a facility that way--that's what we're doing with my parents.  They have a combination of social security and pensions, and the money from the sale of their house.  Once the house money is gone, PACE will pick up the tab for their care. Really, PACE is a great program.  

  • I am dealing with a tricky situation with my siblings who are fighting over how to best care for our elderly mother, who probably has dementia on top of lifelong mental illness and learning issues. Sibling rivalry prevents any sort of cooperative communication and decision-making. The oldest sibling has been the primary caregiver, especially after our father (who took care of our mom) passed away. After a recent hospitalization, our mother moved in with the oldest sibling, which has been tough on both of them. My mother’s paranoia, anxiety and aggression escalated and she now wants to immediately move across the country to live with the youngest sibling, who is mentally ill and a chronic invalid who needs 24-7 caregiving. My mother designated the youngest sibling with Advance Medical Directive and Power of Attorney duties. My oldest sibling is refusing to let her go through with the move. The youngest sibling and their spouse are involving the police and possibly plan to go to court. I understand that my mother is lonely and misses her other children and she retains the right to make decisions. I want her to be safe and healthy wherever she lives. What could be done at this time? Thank you so much for any advice. 

    Obviously a tough situation. It's not clear from your post how many siblings are involved, what resources your mom has (like where else could she live, other than with one of these two siblings?), what your mom's medical issues and diagnoses are, who you are close with, and how you are able to help. Having some family experience with a version of this, the critical issues seem to be is your mother capable of making her own decisions. If yes, and she is deciding to live with youngest sibling, everyone else can be sad and worried about it but that's as far as it goes. If some number of her children feel like she is NOT capable of making her own decisions, is there a doctor who can or has confirmed it? Will mom go to the doctor for an assessment?  Does anyone have power of attorney now? Could all the siblings agree to have a weekly call about Mom until matters resolve? Or just participating siblings with a standing invite to the holdout(s)?

    SEEDS - https://www.seedscrc.org/ - is a great community conflict resolution service. I wonder if they might take your case? They are trained mediators who specialize in helping to resolve just this type of conflict, i.e. individual or small group conflicts between family members / friends / neighbors / community members / etc. where emotions are high and there is an underlying relationship that people would like to preserve and/or mend. I did a training with them last year and was impressed by their approach. 

    a conversation with you and your siblings to try to help you arrive at a resolution together. 

    Here's another non-profit mediation service in SF at Opera Plaza (Civic Center). I used them for a family conflict and they are great and very affordable, a fraction of the cost of a professional mediator. Call and see what they say. https://communityboards.org/

    What you are going through is awful. I call it the "fog of war" time where a parent's situation (that may have already been hard) suddenly becomes uncertain, with conflicting ideas of what is best. Frankly often it isn't clear what is best. Which is part of why it is so stressful. Family conflicts make it 100x more stressful. NYT just did an article on this fog-of-war period, more about a mother being taken advantage of by a new love-interest and cut the daughters out, but it was the comments section that showed how utterly common it is, and so many families go through this. It's much better if the kids aren't fighting but that's not always possible. I hope it is for your family.  

  • Hi! I am interested to learn how other people navigate having elderly or sick parents living abroad (or far away) while you are raising a family here.

    My own situation is that I am from Europe, married to an American, living here for 10 years, and have two kids under 5. I enjoy living here and we have built a good community, though the high cost of living is a burden on us. My mother back home has early onset Alzheimers and has been living with it for about 7 years now. She has in-home caretakers, my brother lives in the same city as her and takes care of all administrative issues and visits and spends time with her, and there are other family members and friends who maintain contact. Overall, she is in good care.

    However, living more or less on the other side of the world means that I can see her 2 - maybe 3 times max per year and that comes with long-distance travel. 2-3 times a year is not great with this disease and I estimate that my mom has about 1.5 - 2 years left before she will reach the later stages of the disease and might not need to move to memory care etc. I am considering moving my family to Europe, which my partner is open to. I am overwhelmed by how daunting it seems - the potential of moving back to my hometown brings up a lot of emotions, both positive and negative, I worry about changed family dynamics both in my family of origin and with my own family, both my husband and I would need to find new jobs, the kids would need to be supported through a major move (which would mainly affect my 5 year old, though at least he knows my parents and the city well as we have spent a lot of time there), etc.

    I am not planning on becoming a care taker for my mom, but to be there to both support my family with her care and to be there for her as she has to go through this terrible disintegration of her life. As I am contemplating the move I am also sad at the idea of leaving the Bay Area and since we don't own a home here and wouldn't be able to take our jobs there, it feels like we would not be able to maintain a strong connection to the Bay Area (though  we would come back to the US regularly to visit my partners family). 

    I am curious how other people navigate big life decisions like this in general, with young kids and elderly parents, and any advice on Alzheimer's specifically. Thank you for reading! 

    I can't say I have an answer, only to share my commiseration and note that I'll be following your thread closely as my husband just brought up this same concern with me last night. He is European while I'm an American, and we moved here about five years ago to be closer to my family in the Bay Area, but he fears that in the next few years, he will eventually be faced with the same difficult choices you're bringing as his parents' health start to deteriorate. I hope others here have some good insight and experiences to share. 

    I'm very sorry to hear about your situation. It's so tough. My family moved from the Bay Area to Europe almost four years ago, and about two years ago my mother (in NY State) was diagnosed with advanced cancer. So I was in a similar position to you, traveling back-and-forth (including during Covid times!), sometimes staying for up to 2-3 weeks at a time. It was expensive and often disruptive to my family's life, but certainly way less disruptive than moving! My mother died three months ago, and I am grateful for all of the time I had with her. One element of living far-away: I wasn't there for a lot of the day-to-day care, driving to appointments, etc. (that fell on my sister, and that's another consideration!), but maybe because of that, I was able to be "present" with my mother in a different way. We spoke nearly every day, and when I was there in person I had zero distractions of work, kids, etc. and was able to really be WITH her. In the end, I felt that "quality" of time was as meaningful as "quantity" of time. One other thing I will say is that, depending on your kids' dispositions, moving abroad is not for the faint of heart. As you probably know, there are a lot of adjustments, different schools systems to navigate, etc. It is sad, but your mother won't live forever, and from what I know of Alzheimer's, the quality of your time with her will definitely shift as the disease progresses. I would really sit down with your family and carefully weigh all of the costs and benefits of a big move vs. a lot of trips. And either way, I would think about how you are able to best "show up" for your mother, your children and partner, your siblings, and yourself through what is a terribly difficult time of life. In the end, I think that matters even more than geography. Good luck with it all. I have found a lot of solace in sharing my experience with other friends who are living abroad as their parents age and die. It's a terrible trade-off for international living. 

    This is a heartbreaking situation that many of us face.  My dad lives across the country (only 2K miles) and has stroke dementia.  It strikes me as though your understandable and deep grief may be guiding your thinking a lot.  Would it be possible for to you in the next 6 months to spend *much* more time in your European hometown with your mom--like, take ONE young child and stay for a month? Could you take family medical leave from work, or work out some decreased work load with your employer?  I know this seems daunting to consider, arrange, and schedule, but uprooting your family to be with your mother could not be what you envision it to be.  Or could you go by yourself for a week at a time?   Unless you want to permanently move back to Europe and your mother's condition is simply spurring you to act more quickly on a move back to Europe anyway.  Anyway, I am so sorry you are going through this and I totally get the grief, fear, and anguish of being so far away from a very ill parent. 

    Hi,

    i moved my family back to Europe to be closer to my parents and siblings and I would say the hardest part is to build a new community. Though I easily found a job the pay is not great and the hardest has been for my American husband who has not acclimated to the language and culture here. My primary aged son has adapted just fine and is happy at school. Happy to exchange more. Feel free to DM me. 

    Sorry to hear about your mother's health. We actually just made the opposite move from France where we'd been for 5 years, and had intended to stay much longer, to the Bay area once my father-in-law's dementia progressed to the point where he only has a year or so left. There are plenty of caregivers in place so we aren't needed in that capacity but we chose to make the move because we know we'll never have these years back, and we hope to create some more memories with him while we can. We have also been able to provide emotional support to his wife, my mother-in-law, which has been a big relief and hopefully will help extend her life as well. If it's the decision you decide to make know that kids are resilient and can even flourish in new settings given the chance, and jobs, even new opportunities, appear when you search for them.  Though we miss our life in Paris and plan to move back in the future, this is where we are meant to be now. Hope that helps you, and bon courage with your decision.

    I have the experience of making the difficult decision to move myself and my child away from a connected community — not for the support of a family member with Alzheimer’s but I still think there is a useful parallel: you mentioned concern for your 5 yr old — my experience was that the upheaval was a challenge, but my child learned some amazing lessons: 1) that things can change in a huge way, but that he can handle it, and even enjoy it. 2)That home is wherever we are, together and maybe most importantly: 3) being with loved ones at times of illness and need is a family value. 
    Best of luck to you and I’m sorry about your mother’s illness. 

    We moved home to the Bay Area partially to be close to family. It's tough in some ways (cost of living! smoke!  educational questions for my kid!), but I am so grateful that I will get to be near my parents as they age, and share the work with my brother.  My folks don't live here yet, but they have spent 3 months of the year here since we moved and are hoping to have moved here within the year.  I'm so glad my kid knows them.  There's every reason to expect they could live another 20+ years, but if they don't, she has had real time with them.  I am so glad that I have the prospect of living near my parents and being able to support them through their aging process, and that my brother and I can share the support roles.  But -- I love the Bay Area and it feels like home to me, we have close friends here, and my brother lives here and intends to stay.  I've accepted that my east coast friends are people I love, but will not see even yearly, most likely.  It's a bummer but I'm not sure what else I can do.  But, I also love it here and it feels like home and not exile.  Where I lived before never felt like home, and really didn't feel like home for my partner.  

    However, what's right for me might not be right for you.  Here are a few things to think about, which don't all cut the same way:

    Do you have relationships other than your family in Europe?  Do you have reasonable job prospects?  If you are just moving there for your mother (rather than your mother leading you to reassess your priorities) I think it's a little tougher as a sell.  

    I wonder how you will feel if you move your family there, and then 2 years later your mother is rarely lucid, or if she dies a year from now.  Where do you want your life to be in the long term?  What feels like home?  If the answer is the Bay Area, can you -- for example -- take an extended unpaid leave and take your children with you for a trip?  Sure, it's expensive, but so is moving and finding a new job.  

    How do you feel about raising your kids in the US vs. Europe?  With current US politics, I am already thinking about when/whether I would leave (and where I would go).  Is your home safer (from gun violence, devastating medical bills, fascist politics, ...)?   

    How close are you to your partner's family?  Would you see them less if you moved?  What does care and support for them look like long term?  How would that affect your family's needs?

  • Hello- I am preparing to move my sister to a memory care facility in the east bay, and would love to hear of any facilities that people recommend / have had a good experience with. I am leaning towards Lakeside Park by Lake Merritt. Would be interested in hearing from folks who had loved ones placed there. She has a little dog and we'd really like to find a place that will accommodate her pup. Appreciate any thoughts/guidance. I am anticipating prices are in the $8K - $11K per month range but guidance on that great as well.

    Thank you!

    I can’t provide any feedback about Lakeside Park, but I did want to let you know about people who work as placement coordinators. Usually their service is free to families and they are very knowledgeable about the facilities available in the price range you provide. I have worked with Sherry Cardenas at Alternative Beginnings 925-595-8533. Best of luck to you!

    We have looked at a variety of places for our mother.  She has been at Elegance Berkeley for 2 months now.  This is the 3rd and hopefully final memory care program she has been in.  There are pros and cons to all of the places.  One of the biggest challenges is staffing, the care givers work very hard and are often working short.  This place has the most engaging programs that we've seen.  Mom likes being able to attend the activities in the active living program. There is a couple that has moved in with their dog, and staff seem comfortable with this.  That said, group living is not what many folks prefer, and that can be a hard adjustment.  Best wishes for you and your family on this journey.

  • With her permission, I am looking for a therapist for my mom, who is the caregiver for my dad/her husband who is suffering from dementia/memory loss.  As we all can imagine, it is so challenging to navigate supporting a partner suffering with memory loss.  As every journey is different, she would ideally prefer one-on-one sessions.  She is located in the Los Angeles area, and is open to in person anywhere near there or virtual.  My dad is enrolled in the cognitive care clinic at UCLA, but they have only been able to give group support recommendations and JCFS in LA did not have any recommendations.  If you don’t have a specific name, if you have general search terms or resources that may help, I would appreciate those as well.   I have to believe others have faced similar challenges and may have resources.  
    I very much appreciate your help. 

    I have a great resource for you!  https://www.instagram.com/creativeconnectionsdementia/ so much free info, and she also has courses and does one on one zoom counseling.  Katie is amazing and a huge support for people like your mom who are caregivers.  Good luck.

    While I'm not sure of 1:1 help, here are some group services:

    There's an organization in NYC that can provide out-of-state resources: CaringKind Helpline: 646-744-2900. They provide support for caregivers of those with memory issues (my mom works facilitating groups in NYC and loves the organization). 

    Also, the Alzheimer's Association is national: alz.org; 800-272-3900.

    Sending good wishes; caring for the caregivers is SO crucial. 

    I recommend contacting Los Angeles Caregiver Resource Center https://losangelescrc.usc.edu/. They provide all kinds of support specifically for caregivers of adults with dementia and other serious illnesses down in LA. I work with Family Caregiver Alliance which supports caregivers up here in the SF Bay Area. Our website www,caregiver.org has a lot of great info on for caregivers caring for adults with dementia and other types of cognitive issues. 
    My best wishes to you and your mom.

  • Hello - I'm looking for advice about how to find a part-time in home caregiver for my senior father with Alzheimer's. We are interested in someone who could come 5-10 hours a week. Many of the elder care companies require a minimum of 20 hours/week so I was curious if anyone had specific recommendations of where to find someone. 

    My mom found good CNA options for my dad using Care.com.  Most of the people there are independent so it requires that you interview and vet them, but she has been quite happy with those she has found.

    24 Hour Home Care does not have weekly hour minimums. 

    id recommend talking with your father’s PCP or neurologist to see if they have a clinic social worker who can get you a better list. I know there’s one available to KP members. 

    A Love for Seniors, ask for Janet Ruehle she will help you find a caregiver no problem 

  • I am seeking a caregiver to provide in-home support to my dad, who is caring for my mom full time.  My mom has early onset Alzheimer’s.  German language skills would be a plus since my mother is German and has lost all English speaking ability.  If you have any recommendations, or advice from your experience with this sort of a search, I would love to hear from you.  We are in Berkeley.

    care.com

    Sorry you're going through this. You might be able to find a caregiver just by asking around, but also you might want to reach out to an agency as they would be connected to a great range of caregivers (might be more likely to find a german speaker).  And if you're working with an agency, they can provide a backup if the primary one is sick or on vacation. I would recommend working with a geriatric care manager (GCM)  to figure out a next step  - they can help you connect with an agency if that's what you want to do. Try GCM Linda Wurth who has a lot of experience, compassion, solutions.   lindawurth [at] bettercarechoices.com 

    This is so tough. My recommendation would be to find an independent caregiver if you can and then also have a relationship with an agency for when you need overnight or substitute support. That is what worked for me in arranging care for my mother with brain disease. It is a lot easier going through an agency than hiring someone yourself but I have found the quality of agency caregivers to be all over the map, from extremely experienced and caring to folks with very little experience or heart for the work (and I have found that to be the most important, this work is HARD and you want a caregiver who sees it as a calling). If your mother is getting home health services, they might have a list of providers they recommend, and so might her provider‘s office. We also got recommendations from our hospice care service, which I have used for overnight care as well, but for ongoing weekday care I actually ended up hiring someone who had previously cared for my son. She hadn’t worked as an adult caregiver before but she had cared for a family member and trained as a behavioral tech and I knew her to be trustworthy, patient, and calm under frustrating circumstances.  If you do go the independent caregiver route you will need to get set up as employer and get worker’s compensation insurance. I would under no circumstances hire someone “ under the table” for this. You are exposing yourself and the caregiver to great risk considering the not insignificant chance of injury in this role.

    If you are not already connected, this is a wonderful organization and can usually help with all things related:  https://www.alz.org

  • Does anyone in the network have knowledge of small-group-home care situations in the East Bay for seniors with dementia? I'm hoping to find a private home where (four to eight or so?) residents live full-time with caregivers. I am particularly hoping something like this might exist in Oakland. 

    Alternatively, recommendations for local geriatric-care advisors who know all the nuances of Oakland-area senior-care options would also be greatly appreciated. 

    Context: My 88-year-old father is still managing many of his activities of daily living with a modicum of independence despite having fairly advanced dementia. (For example, he can dress himself, but needs to be instructed to change clothes or would otherwise spend days in the same outfit. He can feed himself, but needs to have meals prepared and presented to him, as he would otherwise forget to eat. He can brush his teeth, but needs to be handed a toothbrush with toothpaste already applied.) He has been living in a private room in a lovely, expensive, busy, and fairly large--75 residents--assisted living facility in Oakland for 2.5 years. 

    Recently, Alzheimer's seems to be increasing his level of combativeness and the ease with which he gets triggered to anger: by the "noise" of other people's conversation, by other residents walking by, by someone telling him, "That's my seat, not yours!" Once he's triggered, he lashes out, shouts and swears at people, and has struck and attempted to trip other residents. We have ruled out typical underlying causes for mood changes (UTI and so on), and added a 2x daily dose of "calming" CBD to his med regimen two months ago. His doctor is considering adding an antidepressant to the regimen next. We are looking into hiring a private aide to sit around with my dad during the day to redirect him to prevent altercations, but this will be prohibitively expensive in the long run, and may just piss off my dad further anyway; he prefers to be "alone in company." If my dad's outbursts don't subside or can't be managed via meds, I have been informed by facility leadership that they'll kick my dad out to ensure the safety and peace of other residents. 

    I'm hoping this wise network my have thoughts on alternative, smaller care situations, or care homes with a higher ratio of staff to residents, that might reduce triggers for my dad and keep him (and his fellow residents) safe and relatively comfortable in this painful late stage of his life.

    Thanks for sharing your knowledge. 

    Hi, I went through the same thing with my no-88-year old father a couple years ago. He wasn’t aggressive but his dementia advanced past the point that his assisted living home would handle (point at Rockridge). I worked with Linda Wurth to find a small board and care home in Castro Valley where he is now safe and well cared for. Linda has contacts at many facilities throughout the East Bay. Her site is bettercarechoices.com. 

    Very sorry you are going through this, and unfortunately it is familiar territory to my family as well.  It sounds like your father is in Assisted Living - but even Residential Memory Care programs (specifically for dementia) are not set up to be able to handle combativeness or extreme agitation or aggression and I think they are all likely to require the private aide you mentioned if they can't deal with his behavior.  Piedmont Garden's "The Grove" (41st street near Piedmont Ave) has a smaller-than-most Memory Care program, with 16 residents. 

    Another GCM had told me about "Board and Care" places which sounds like what you are describing, where the ratio is something like 2 caregivers to 6 patients, but I don't know any more about that.

    I recommend contacting GCM Linda Wurth, Better Care Choices: http://www.bettercarechoices.com/ to help navigate the process of finding a new place.  She came with us to Memory Care places and helped us cut through the marketing pitches.

    It is great that you are trying to solve this by removing triggers and changing environments, but it might be that med management will also be needed. Your father's agitation may continue and may get worse - it is worth working closely with his doctor (ideally a Geriatric Psych), to find the medications that will make him less agitated.  This may take time, trial+error.  Might be anti-anxiety or anti-depressants, or may be stronger medication.  And in that category - the antipsychotic drug Seroquel proved very helpful in reducing extreme agitation in my mother's case (...I'm not a doctor, and of course YMMV)

    My mother has Alzheimer’s as well and we moved her into a memory care facility ( this is in Sacramento.) My loving and happy mother is now angry and belligerent at times which still shocks me but this is the disease. I recommend you move him into a facility which specializes in Alzheimer’s as they are used to these behaviors and the staff are trained to manage. I have only visited one here in the Bay Area and that is the one in Albany called Belmont village. It was fabulous but also very expensive. I have two friends whose parents are there and they are very happy with the location, facility, and level of care. Good luck!

  • Hi, all:

    I have a neighbor who's been diagnosed with early onset Alzheimer's.  He's looking for a top-notch neurologist with a good bedside manner; his GP has recommended a few doctors who have less than stellar online reviews.  He knows that UCSF has an excellent practice but would prefer seeing someone in the Berkeley/Oakland area. 

    Also, he'd like to find a financial planner who specializes in helping people with this diagnosis.  His finances are modest, and he's trying to figure out how to navigate the future.

    Thank you.  

    I see a neurologist, referred by my internist.  I looked at his yelp reviews, which are mixed.  The waiting room is subdued, it's not like a pediatrician or sports medicine waiting room.  So the thing I wanted to say about neurologists is they work with people who have some problem going on in their brain, many of which are not curable.  I include myself in those people.  And they may be having weird symptoms or having to get brain scans etc, and they may be upset and blaming the doctor unfairly.  My neurologist had about 3 stars on yelp,  and some terrible reviews, but I feel I receive excellent care.  Thanks for being a good neighbor to someone in need.

    Thank you for that thoughtful reply.  It does help to be empathetic in all our interactions.

  • Anyone have experience with flying 95 year old nonstop coast to coast? Relatives to take her to airport and pick her up. I have misgivings due to her age and senility but my stepsister pushing for our mom to visit my sister. "Stepfather needs a break."

    My MIL was 86 and in the early stages of dementia when she made her last visit to our home from Chicago.  Like you, we did not feel comfortable having her get from security onto the plane or vice versa.  We bought a ticket for a family member to accompany her.  It turned out to be well worthwhile, because there was a flight delay after she checked in, and she got confused coming out of the bathroom and was heading in the wrong direction for boarding, which could have been a disaster if she'd been on her own.  I don't think "unaccompanied seniors" get the same attention as "unaccompanied minors" but they may well need that level of supervision or more.  If you don't have a family member, you may be able to find someone through word of mouth who would be grateful for a ticket in exchange for supervising.  

    My rec is that someone should fly with your mom. My enderly mom with dementia had to be accompanied by her aide to come visit her son in hospital. I don’t know what shape you mother is in physically or cognitively, but my 89 year old mom couldn’t have done it alone.  Good luck to you and your mom!

    You should have an escort to accompany her on the plane -- someone who is able to handle what may come up, whether it is the need to use the rest room or a medical need.  You shouldn't expect the flight crew to take responsibility or assist her, as that is not their job except perhaps in an emergency -- or simply depend on the kindness of other passengers if she needs help. We flew my 86 year old mother with significant medical issues (not dementia) from Florida to New Jersey last year and used a company called Advanced Air Ambulance -- they helped make the flight arrangements on a commercial flight (first class) and provided a registered nurse to accompany my mother before, during, and after the flight.  Highly recommend the company.  Two other thoughts: if you are considering this, you should have a cardiologist clear her for flight travel -- don't assume she's up for a cross-country flight.  I am sympathetic that your stepfather needs a break.  Have you looked into any local skilled nursing facilities that offer short-term respite options for patients (i.e., care for the patient; respite for the family for a week or so).  Perhaps your mom has medical insurance that may cover that; and even if not, if may cost you less than the flights and escorts.  

    When my grandma was in her 90s and needed to travel, someone would accompany her. So my mom would fly out and accompany her back, then take her back again. She was totally with it mentally, but physically needed assistance. It was more expensive, but put everyone at ease that she wasn't navigating the trip alone or relying on the airline. After a while, it was more comfortable for my grandma to travel via train (even cross country). Again, my mom would accompany her and they'd get a sleeper car.

    I completely understand that your step father may need a break from being a caregiver, that is why there is "respite care." Just google "respite care near me." I would think plane travel might be too taxing for her, and she should probably not fly alone, but you should check with the airline in advance to see what they recommend. Good luck.
     

    My mother, with no real breathing problems, couldn't stand to fly after she was about 82. It was exhausting, stressful, and dehydrating (and that was before she became senile and afraid).  This was even for short flights within California. Note that commercial aircraft cabins are only pressurized to an equivalent altitude of 6,000 to 8,000 feet -- so think Tahoe or higher and how hard the mountain altitude can be on elderly visitors there. And the flight across the US is 5+ hours.  When was the last time she flew across the country?  If it has been longer than a few years, I absolutely would not recommend it. Better for someone like your sister to fly to where she is and take her on a (nearby) road trip to give her partner a break (as I'm presuming her partner would like some down time in his own home; otherwise, I would recommend someone should stay with your mother in her own home while her partner takes a break elsewhere; note that it may also be very difficult for the senile 95 year old to be moved to skilled nursing even for a brief respite, which I also know from experience with my mother in her later years)... The other interesting stories of air travel people have contributed in response to your post have largely been for elderly people who had to travel to see someone else who couldn't travel (the 'visitee' was in the hospital, for example). If there is some way for the younger people to do the traveling to where your  mother is, I would not send or take a 95 year old on a cross country flight, even if accompanied by a relative. And remember -- it's not just one flight to get through -- it's a round trip... Whatever you choose, I hope things go smoothly for your family...   

  • Any recommendations on good residential homes -- preferably Berkeley, Albany, El Cerrito, Kensington or Richmond -- with a memory care unit for an elderly woman (aka "Mom") with moderate Alzheimer's?  Our family is conducting a multi-state search (three daughters, three states) and I'd like to investigate what's available locally.  We want to place her somewhere where there's lots of social interaction with both residents and staff, and where the care philosophy is one of contented dementia. Our mother doesn't qualify for Medicare, so we will be private paying, and are looking at facilities in the $6,000-8,000 / month price range for a private room (and including skilled nursing and other services that might count as add-ons).  Thank you for any recommendations!

    You know what, you should call this organization called A Place For Mom. They are a free service and they hook you up with several options based on your specific needs -- like a matchmaker for eldercare. I've been coordinating with them on behalf of my mom and they know ALL the places. I would call rather than trying to go through their online form, that's a much more efficient process. 

    http://www.aplaceformom.com/

    My family has had experience with two such facilities, Bayside Park and Lakeside Park.  They are run by the same company, but I believe that the owner has changed so you will need to check them out carefully.  We had some glitches with them but if I had memory issues and needed to be in a residential facility, I'd still pick them.  Bayside is larger and tends to have a more independent population, but they have a floor for residents with more serious cognitive problems.  The Lakeside facility is smaller and the residents tend to be more impaired.

    http://lakesidepark.watermarkcommunities.com/

    http://baysidepark.watermarkcommunities.com/

    I strongly recommend you investigate Tara Hills Care Home in Pinole. Very small (6 beds?), personal care, really wonderful people. Looked after my mother during an incredibly difficult time. Not sure what their prices are now, but they were quite affordable 6-7 years ago.

    Contact me if you require more information.

    https://www.facebook.com/tarahillscarehome/

    I looked closely at Salem Lutheran Home in Oakland, but I see they are now: Pacifica Sr. Living (http://www.pacificaoaklandheights.com/). When it was Salem, I was VERY impressed with their Memory Care section for my Mom, who I'd been caring for in my home. But the physical plant is the same; and the cursory search I did on this San Diego company Pacifica is encouraging. Good luck finding the right fit for your Mom!

    Hello,

    I'm sorry, I've been in your shoes, so I know the challenges.  I strongly encourage you to use an absolutely fabulous resource who will assist you in your search here (locally):  Mona Lalchandani.  Website:  http://www.exceptionalseniorplacement.com/index.php  Read the reviews on Yelp--she is amazing and I can't recommend her highly enough!  If you're worried about cost, don't be--I guarantee you will be happily surprised.  

Archived Q&A and Reviews


Questions  

Dad having trouble caring for mom with dementia

Nov 2009

My mother just turned 80yrs may be in need of a senior home or adult day care. My 81yr dad is healthy and alert, but weary and getting increasingly frustrated caring for her at home. Since her stroke, she is listless most days unless she gets a visitor. She does act out sometimes, plays with her stools then refuses to shower, which is a problem no one wants to touch. She may recognize people but her words don't make sense and she cannot recall names. She is otherwise healthy and friendly. Looking for ideas on the next step in elderly care. Would she do better with one-on-one care or adult day care or is there something/someone in between? Is there a good book that discusses these issues? Will Medicare help with any of these costs? I have two siblings but between FT work, typical small home, and young children, we're anxious about realistically trying to take her in. Sr. home recommendations in the East Bay or Penninsula are welcome. Would love to hear about what works and what doesn't work from others in similar situations. Signed, Want to do what's best for aging parent(s)


My mother has had dementia for over a decade, and we've been doing caregiving at all levels: mom living alone in her own house w/ much support from us, hiring PT caregivers, bringing her to live with us, and now about to place her in a facility. The subject is too complex and varied to sum up w/ a succinct reply but please feel free to contact me off-line for a long (and sympathetic) chat regarding options and referral sources. Otherwise, here are some places to start:

Alzheimer's Association of Northern California http://www.alz.org/norcal/

Family Caregiver's Alliance http://www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083

A Place for Mom http://www.aplaceformom.com/

Best of luck! Janet


I sympathize. My dad is almost 90 and out of state so I can't make local suggestions. I am thankful for the Alzheimer's support group that I attended. I learned from the sharing of personal experience. Also, they emphasized getting health power of attorney and financial power of attorney in place, as an accident or illness can really accelerate the disease. When my dad had a bad fall it was clear that he needed to be in a dementia unit. I'm sorry I wasn't able to get him there sooner because his wife might have lived longer if she hadn't been so worn out from caring for him. Oh, also I had spent my visits in my dad's state visiting facilities and had an application on file at two so admission went smoothly. Thankfully, my dad has savings that pay the bill and hopefully he won't outlive his savings. My dad was seeing a geriatric doctor who specialized in memory issues so I received guidance from the social worker in that office. anonymous


We just went through this with my grandmother and found Marjorie Fielding at A Place for Mom instrumental in helping us figure out what to do. My heart goes out to you at this tough time. Here is her information Marjorie Fielding Eldercare Advisor 866-366-8914 Marjorie.Fielding [at] aplaceformom.com http://www.aplaceformom.com/ Melody


1--You need a plan and resources. Contact the Family Caregiver Alliance in San Francisco -- http://www.caregiver.org/caregiver/jsp/home.jsp They can help get your situation assessed and offer suggestions and resources. Otherwise the strain of caring for your mother could adversely affect your entire family.

2--A structured environment is usually good for people with dementia. I am no expert, but I'd guess that if someone is playing with their stool, they are probably beyond the ''adult daycare'' stage. If your dad is open to it, you could consider a nursing home with a ''memory care'' wing. It could help give him his life back.

3--Another alternative is to look at a ''board and care.'' These are residences designed to house people who need help with the daily chores of life. They are generally smaller, more homelike, less expensive, and more personal than nursing homes (of course, that is a generalization). My mom is at one we're very happy with. She does not have dementia, but the owners of her board-and-care do have another residence for people with dementia. Once you've come up with a plan and know what you can afford, contact me by email; I'd be happy to refer you and you can see if it's a good fit for you. LK


If your parents are California state residents recieving or eligible for Medi- Cal they should be eligible for In-Home Supportive Services from their county of residence. In Alameda County the office is in Oakland at the 6955 Foothill Blvd.. You can contact the intake line at 510-577-1900. You're folks would be assessed by a Social Worker who would then authorize hours for someone to work in their home in order for them to be safe. This may be an option you'd like to explore. IHSS Social Worker


First off, let me express my sympathy with your situation. My family and I went through the same thing for the past 5 years. In the end, it really depends on your family's resources and ability to care for your mother. First off, it is not a bad thing or a poor reflection on you if you need to seek the assistance of an assisted living facility or a full time home care aide. My brother and sister-in-law are RNs and home care aides themselves but it was a job bigger than they could handle to have our father living with them. An assisted living facility was better equipped and able to provide the care and attention that he needed. I think as well that it may be an increasingly difficult load for your father to handle at his age. Some places have a ladder-type approach going from independent to group to SNF to hospice depending on the needs of the resident. Obviously, the costs go up at every step. That type of facility may be good for your parents so that your father can visit your mother on a regular basis and she can get the care she needs. A good book that we found helpful for caregivers of someone with dementia (it says Alzheimers, but many of the issues are the same with dementia) is called ''The 36 Hour Day'' http://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-Illnesses/dp/0446610410 My wife, an internist, uses that book to help the families of her patients who are headed towards Alzheimers or dementia. Good luck and stay strong! Health Care Guy


I cared for my Mom (in my home), from age 85 to her death 2 mos. shy of her 91st b'day. She was diagnosed w/Alzheimers - but my 2 kids were in h.s./college when I took that role on (Sandwich-Gen Mom). Plus, my Dad had died 6 yrs earlier, so you have a tad more on your plate...

I would say that you should find an assisted living place, where they could remain together as long as possible. The moment will come that she'll need to be moved to the portion for dementia patients who need full-time supervision. But til then they could stay together, and have the support services those places offer (dressing/bathrooming/bathing, etc.) Change is very hard on dementia/ Alzheimer patients, they lose a lot of mental ground trying to process it, so having her hubby's dear face, and presence will help her retain what little she's got left. And the help w/the daily living tasks, will remove a terrible burden from him, as well.

The book I found most helpful was ''The 36-hr. Day'' by Nancy Mace & Peter Rabins. They cover EVERYTHING, incl. the playing w/potty products, bathing, etc, etc. We lived in NY when she moved in, and NY's system was GREAT; when we moved here in Dec. '05, it took me from Jan.-Oct. to figure out the maze that is senior care/benefits in CA, so, if I were to do it over, I'd have hired an elder care advisor the moment we got here, it SO would have been worth the $! (Janet Brush at: bayareaseniorcare.com was VERY kind in a consultation, I should have put everything in her hands at the time...''Hindsight being 20/20'', and all) I also looked at the Salem Home www.salemlutheranhome.com, for the moment when my Mom became bedridden (we were VERY close to that) and if she's lived, I'd have gone with them.

If you lived on a farm, and had Auntie Em to help out, maybe it'd be feasible to take them in, but that's not the reality of life today for us urban-dwellers. I had 2 bros, but they got all ''alligator-arms'' when it came to anything much more than 'paying Mom a visit'. Your kids, husband and bank acct. need you in this phase of life; the lesson is that we not-yet-geezers (or in my case, 'early-geezer') need to PLAN to move into assisted care, so our kids and grandkids don't have to contemplate 'choosing' bet. elderly, ''frailing'' (my term for my Mom) parents, and their young families. Just as in ''the olden days'' Moms planned for retirement, we're living so long now, we HAVE to take into acct. the phase AFTER retirement... It's HARD; e-me if you want to vent, etc. Moderator has my permission to give up my e-address... Hang in there. The ''Sad-but-True Dept.''


My father was just diagnosed with Lewy Body Dementia

Feb 2009

My father was recently diagnosed with Lewy Body Dementia. We're still trying to process what this means for our lives and I was wondering if there was someone out there who can help guide us through this process a bit. Specifically, I'm wondering who the best doctors are out there who treat LBD as well as how we can help him with his body pain/aches and problems sleeping (which are the worst symptoms right now). Of course any other info in terms of what we should focus on first would be greatly appreciated. Thanks in advance for the help! Overwhelmed


I am so sorry for your father's diagnosis. My mother-in law past away a few years ago with Lewy Bodies. It is a heartbreaking process. Her primary care was at Kaiser. We didn't have alot of choices and we didn't feel that there was a lot of help for her. It is worth looking into some of the clinical trials that are going on. Sylvia took aricept for a few years that that really helped with the confusion. Later there were other drugs.

There is a lot of heartbreak that comes with this disease but we all felt that the last few years were also a gift. She was surrounded by her family and cared for well. Her first grandchild arrived during the final year of her life and that brought her an amazing amount of joy.

I am more than happy to share our experience with you. Please feel free to contact me drectly. Good luck. terri


My father has Lewy Body Dementia. It presents a lot like alzheimers, only my dad hallucinates,gets angry, and paranoid. Medications can help with the moods. An Alzheimer's support group was very important in helping me prioritize what I needed to do. I was able to get him to sign both medical and financial power of attorneys while he was still lucid. I visited facilities with dementia wards and had an application in so when we had to get him this necessary care, we were able to do it. My dad's in Iowa so I can't help with local care. anonymous


Dealing long-distance with my father's dementia

Jan 2009

My father has had a growing problem with memory loss and judgment problems for some years now. I don't think it is Alzheimer's because he has not had the accompanying physical deterioration. But it is clearly some form of dementia, and it's starting to be a big problem. He has just been swindled out of a huge sum of money. I think this is the loud and clear wake up call that other members of the family will need to try to take steps to take stronger actions with him--like take away his car keys and credit cards.

My parents and other family members live in the midwest, and while I know there's not a lot I can do from this distance, I would like to offer support and suggestions to my brother who will bear the brunt of this task (but yes, I will probably travel there soo, at least for a while, to help with the ''heavy lifting'').

Has anyone out there had to deal with this before? What advice can you offer me? What do you wish you'd known earlier? What resources helped? How did you keep tabs on things? What do I do next? thank you a daughter


As you may know, there are many different dementias; Alzheimer's is just the one that everyone's most familiar with. My father in law has been struggling with dementia for at least 10 yrs now - his diagnosis is Frontotemporal Dementia. In many ways it is like Alz's, but w/ impt differences. You might want to google it, as well as Lewy Body Dementia, for starters. Although my FIL does not have Alz's, the local Alz's support group is very good - independent of the person's particular diagnosis. You say that you think there's not a lot you can do from this distance - actually, I think there is quite a bit you can do. First of all, doing research on line and with dementia professionals is something very valuable that you can do for the whole family. Also, you can get the whole family talking about this via some group emails. (If you think that would be productive.) You can also do some phonecalling to find out what are the best resources for your brother to use in the area where all of them live.

You ask what others wish they had done differently - when I look back on how long my FIL was allowed to drive even after everyone was aware of the problem, I am very grateful he never caused an accident. There are major safety issues there, and there are major liability issues. I would recommend taking the license and keys away immediately. The laws regarding conservatorships vary by state, but you probably want to pursue a conservatorship - in order to control medical issues as well as financial ones. My FIL has been very resistant to 1) admitting there was a problem 2) dealing with his problem 3) allowing others to do what they need to do to help him 4) being proactive about preserving the brain power he had left. They told him 10 yrs ago to cut out alcohol completely, and they also told him, with regard to his mental capabilities, ''Use it or lose it.'' Both of these pieces of advice were ignored. I wish we had forced him to listen to the doctor's advice.

I could say a lot more but it would be easier to do so in a phone conversation. Feel free to email me. Good luck to you. I think that the bottom line is that getting as much information as you can regarding dementia, the treatments, and the best places to get treatment, as well as informing yourself on what this means to your family, and how different family members may react, is the most important thing to do (besides taking away the car keys) at this time. MM


This is a really hard situation to go through, and it's hard being the sibling close by and the sibling far away. I have been through dementia with grandparents, great-aunts, and cousins, and my best advice is to find a good, understanding, gerentologist. You want someone who really listens to your concerns and does not think dementia is merely ''part of getting older'' or ''to be expected.'' Specifically, it is important to see if there might be something treatable leading to dementia. A cousin of mine needed full-time care until it was determined that a drug interaction was causing her confusion. My grandmother was greatly helped by antidepressants. In your case, there may be something that cannot be treated, but dementia is not necessarily an all-downhill slide. Good luck! Been There


Family Caregiver Alliance in San Francisco has information on dementia, long-distance caregiving, and supporting family caregivers. They have a good website with lots of info and you can also schedule a session for more personalized guidance. Good luck! Been There, Still Doing That


There are different forms of dementia. My dad lives in Des Moines, Iowa and has Lewey Body disease--memory loss uneven, halucinations, paranoia, act out. I took his partner to an alzheimers' support group and they were very helpful. I realized that I had to get medical and legal power of attorneys in place immediately. Not easy. I was the closest to him and I was able to get these in two different visits and by the time I visited again I had to have him placed in a facility. I had checked out facilities in previous visits so I was able to move fast. Illness or physical accidents can really accelerate the disease. I am now managing his affairs from here while family there visits. If you could get your father to sign a conservatorship to a family member that would make handling his affairs easier. In Iowa I received advice from legal aid and an Elder Affairs group. I did a lot of groundwork, yet I was still deep into denial until I was plunged into an emergency situation. Oh, and getting the car keys away is another saga. The moderator can put you in touch with me if you would like to ask me any questions. anonymous


I'm dealing with something similar, have been for several years. I HIGHLY recommend Jewish Family and Children's Services of the Greater East Bay. Even if you're not Jewish, they have loads of expertise and experience and compassion. They have a senior services office on San Pablo in Albany, and they offer support groups for ''distance'' caregivers like us. (My mom is on the east coast) There are also other JFCS's in most major cities, and some smaller ones, too, so your relatives can access the same system of support. I've learned that there are two types of questions to ask: one has to do with coping as your dad is now -- keeping him safe, healthy, and (if this is what he and your family want) as independent as possible for as long as possible. The other type of question has to do with possible futures: what's the potential trajectory of his dementia, what are his options as it escalates, and -- here's the kicker -- at what point do you start to lose options if you don't act?

Even though you don't think he has Alzheimers, I also recommend the Alzheimer's Association website. They have lists of different kinds of dementia, and how they differ. For my mom, at this point, it doesn't really matter what kind of dementia she has, because the treatment options are really similar. That may or may not be the case for your dad, but the Alzheimer's Assoc website is a good starting place.

good luck! -Sandy


My mom has dementia and I have 3 little kids

Dec 2008

I am helping my mother with early stages of dementia while taking care of three children ages 22 months to 8 years of age. Anybody else in this boat? Is there a support group for children taking care of their parents? Any interest in forming a support group? Any advice?


I've been parenting and parental caregiving for the past four years, initially w/ both parents and now just with my mother who has mid-stage Alzheimers. The Alzheimers Association and the Family Caregivers Alliance are invaluable resources for caregivers needing support. It's a challenging road and there is much more to say, so feel free to contact me privately if you like. And best of luck. Janet


I understand your situation, I have a 22 month-old and my mother is starting to have cognitive/memory problems, too. Does your mother participate in any services? UCSF has an excellent Memory Clinic, and several social workers for family support. You should also contact the Caregiver Alliance for other resources. Happy to talk more if you need, I know it is very rough... mmg


Hi there, You might think of contacting your local adult day care center. They may have some resources for you. Im not sure where you live, but here is one resource. http://www.adultdaycc.org/program_locations.html Best of luck


I am in the same boat dealing with my father and found the free support groups and classes that ElderCare Services offered to be very helpful. They are in Walnut Creek or San Francisco each month. www.eldercareanswers.com

The help ranged from the very practical to the emotional. Early on, it was really helpful to connect with other people dealing with the same challenges. Its really easy to get frustrated and hearing other people go through the same struggles gave me permission to be easier on myself.

Good luck to you and your family. It isn't easy. Jennifer


You might want to try contacting the Alzheimer's Association, Alzheimer's Services of the East Bay, and/or the Family Caregiver's Association (in SF) re: caregiver groups for the sandwich generation or children with small children caring for their aging parents. There are a lot of caregiver support groups around the Bay Area, so you will probably find what you are looking for. good luck..... anon


Coping with my mom's memory lapses and suspicion

Nov 2008

I need advice how to proceed forward after an incident between my mother and my husband. My mom is in early 80's, very independent, and very smart. She enjoys using her computer and has been learning how to manage her desktop and laptop computers. She asked my husband to show her every step of the way how to do it. My husband - who knows quite a bit about computers - has gone above and beyond to teach her the last few years. He's patient, listened and answered every question she asked. He cares for her and enjoys her company. He currently is out of work so he is spending more time with her to keep her company.

Recently, her network broke down and my husband went over to help restore it. Later that evening, she told him she felt that he went behind her back and changed the network settings without telling her. She was angry. What she said scared my husband, who is concerned that their relationship is damaged.

My mother has short term memory loss. She has seen her doctor about this issue. It is a big concern for her. After the incident with my husband, I believe what happened was my mother had a memory lapse, but she insisted that it was not.

I know I could encourage her to go see her doctor. But, how do my husband and I cope with this? I suggested from this point on to try to document everything he and she discuss about fixing or changing something on her computer, so she would have something to fall back on. But, I know that's a hard thing to do. Is there anything else we could do to deal with her worsening memory loss, without making her feel worse? What could my husband do to get her to trust him again? He's sick about this.

Thanks in advance for any suggestions. Concerned daughter


Stages of dementia include first short term memory loss often accompanied (or later accompanied) with paranoia. My mother started to forget certain words when she was about 87...then she became paranoid. She thought people were coming into her apartment and taking things...she thought someone was using her bathroom and her hairbrush at night when she slept (sounds funny, but to her it was very real)....this progressed as she had memory lapses...lost her concept of time...thought people were trying to kill her....etc.It got worse and worse untill finaly she didn't recognize me or my brother except for rare moments...then she'd be gone. She lived till 94 and was totally incoherent by then.

Medication slows the process but doesn't reverse. How can your husband and she repair their relationship? I can't answer that. If she does have dementia then she really believes he did what she says. Talk to he doctor for sure. Good luck. Been there...it's not fun, anon


Well, I hate to say it but it sounds like your mom is showing signs of dementia. There probably isn't any way for you to convince her that she's wrong when she gets things mixed up like this. And she may start to get meaner and meaner to her family members as time goes by, too. My husband and I have looked after three elderly relatives who had dementia and/or Alzheimer's. It's pretty hard to be patient and stay nice when you're being yelled at or falsely accused. Definitely doesn't work to try to reason with them. I think you just have to agree, apologize, console, whatever calms her down, in as calm a way as you can muster. You just have to let it roll off your back and try to smooth things out the best way you can, and expect to be frustrated sometimes. It helped me to talk to others who were going through this. There are Alzheimer's support groups -- google and you should find them. We visited a therapist who was experienced with older folks and especially with dementia. The local Alzheimer groups or the Over 60 Clinic in Berkeley has a lot of experience with this and should be able to provide referrals. Your mom's doctor might help too. I'm so sorry you are going through this. All the best -


The psychological issues are tricky, and I would urge you and your husband to seek counsel for yourselves from someone who has met your mother several times and who can help you help her with them. Situational suspicion is, sadly, fairly commonly with memory problems. It's a pretty tough and painful situation. Her mistrust of your husband can most likely be repaired, but may recur. It also sounds as though your mother needs help of a sort you haven't asked for, too. Do you know why she is having short term memory problems? Does your mother have a diagnosis? Is she taking Aricept yet? If not, please look into the possibility that she needs it. It does wonders for my patients with memory problems, in that it seems to greatly slow the process of memory loss. Some benefit, additionally, from a variety of things I can tell you about. Also, make sure she is remembering to stay well hydrated. People in the early stages of memory loss can benefit from psychotherapy to help with the frustrations, the potential for shame, and for the tendency to jump to conclusions about others. Do talk with your mother's doctor. If you're not thrilled with her doctor, Nicola Hanchock, M.D. is a wonderful, experienced gerontologist as well as an internist. She's on Telegraph in S.Berkeley. Or Shane MacKay, M.D. is a competent and very personable psychiatrist who does good evaluations and medication for memory. I do not like the local neurologists who specialize in the treatment of memory problems. A less psychologically damaging diagnostic evaluation, if she hasn't had one, can be done by a good neuropsychologist and some brain imaging tests by a savvy primary care physician and gerontologist like Dr. Hanchock. Also, have you noticed any hearing problems? Judith


Has your mom changed meds or added meds recently? My mom, who is always somewhat paranoid, became more so a while back after adding a new medication. My husband is more comfortable taking a step back when she gets into that mode. Good luck. wishing you the best


If your mother is starting to have problems with short-term memory, you will eventually see a loss of judgement and common sense.

The brain's short-term memory does more than just remember facts. Short-term memory is needed to determine what's reasonable. In other words, it is needed for judgement calls.

When you read about a senior citizen paying a plumber $30,000 to change a washer on a faucet, that's a result of the senior losing the short-term memory required to judge if a bill is reasonable or not.

If your mother has stopped trusting your husband, it's because her loss of short-term memory has made her unable to judge if he's trustworthy or not. Perhaps you could teach her how to get a second and third opinion when she can't determine on her own what to believe.

Luckily, she still trusts you, but this could eventually change. Been there


I've been taking a great Brain Fitness program that I think your mother would benefit from. Its attended by folks in their 50's - 90's. Its free and is offered by the Oakland Adults over 50 Program. New classes are starting in January and I would suggest your Mom attend the classic ''Brain Fitness'' program, as seen on KQED. It will help her with short term memory, focusing and remembering things. You can call to get a catalogue at (510) 879-4090. The instructors are very well trained and responsive to the needs of an older population. I've taken this program as well as ''Insight.'' The value of the programs are self confidence and the ability to improve memory, focus and driving ability. I think if you suggest this information to her, your husband and your Mom will eventually work things out. Please feel free to contact me if you have any questions.Joyce


Assisted living facility is threatening to evict my mother

March 2008

I am wondering if anyone can suggest resources to help me figure a course of action for my mother who has dementia. She has been diagnosed with dementia in the last few years and the facility threatens to kick her out when she doesn't cooperate as they like. Our understanding when she bought into the facilty and they assessed her finances was that they would care for her for the rest of her life. Since she has been moved to assisted living several years ago her money has been spent more rapidly and she has about a year and a half left of funds. Can anyone recommend a lawyer (specializing in this sort of law) or some other resources to help me figure out if the facility has the right to evict her - they do not have a dementia ward and how we can care for her when her money is gone. I feel quite panic struck by what will happen when her money runs out. Living with us in our 1000 sq ft house with 2 small children is not an option. anon


My heart goes out to you as your struggle to accommodate your elderly mother. I have had to deal with not just my own parents and their dementia, but also my aunt and uncle, both elderly and childless. The best referral I can give you is to call Joanne Nelson, a Senior Specialist. An hour with Joanne is worth every penny. She can help you to determine the best way to navigate the ever shifting landscape of your mother's needs as well as factoring in her diminishing funds. Joanne is also one of the fiercest advocates when dealing with the medical system. She works out of her home in Albany and can be reached at 510-526-9502. Been there, done that.


So sorry to hear about your situation. Here are a few websites I came across when looking into care for my parents. I hope you find the information useful. Good luck.
http://www.caring.com/ http://www.naela.org/ http://www.caringformom.com/ http://www.chcf.org/topics/medi-cal/index.cfm?itemID=20583=consresources
Christine


Hard situation, but not uncommon. Lots of limitations in Assisted Living. I know of Priscilla Camp who is an elder attorney. I don't know for sure that she deals with this sort of thing but it may be worth a try. #510/465-3885. You have to speak with Dierdre to set up a consultation. Good luck! Helen


Read the contract carefully and see what the rules of the facility are for residents. Contract law is pretty cut and dry: what the agreement states is the way it goes. If the facilty is telling you to do something that isn't in the contract, you have a strong case. Good luck


I presented your question to my friend who works in the licensing office that oversees assisted living facilities, and she gave the following reply:

''First, I'd like to know the name of the facility, and whether it's one of our licensees. I'd like to see a copy of the contract she signed, and see what the agreement actually was, so I can tell if there was a breach. I'm not sure what they mean by a ''dementia ward''. Is it the case that this facility lacks the ability to care for clients with dementia? If so, and if they are one of our licensees, that may be a violation.''

''It sounds as if whatever the answer is they will need to move their mother to another facility. Where will depend on her needs. I would have her assessed by a geriatric care manager, like Dr. Jane Mahakian. She has an office in San Francisco, and was very helpful to me when I was panicked about finding a place to meet my mother's needs. Check her out at www.agingmattersinc.com.''

''How to pay for this stuff---well, first you have to figure out what she needs, and what it will cost. There are a number of options depending on the level of dementia, and what services she really does need. If there's a good breach of contract claim, there's more money than mom has now. Otherwise, you have to look at places that will take her with what assets she has. There are some non-profits that will keep clients who run out of assets. I assume she probably has social securty. Medicaid will pay for nursing home care, but not a lower level of care. Depending on her level of dementia, a nursing home might be appropriate. Dr. Mahakian is familiar with facities in this area. It would probably be a conflict of interest for me to mention specific facilities, since we license them. But I would definitely tell her to have a look at the public file (housed in our San Bruno office) before she selects one.''

My friend said can give you some names of lawyers who specialize in this stuff, if one is needed. Contact me, if you want, and I'll get you in touch with my friend. Lisa


check out California Advocates for Nursing Home Reform. http://www.canhr.org/ THe last I heard, they had a very good lawyer who know all the ins and outs of spending down and long term care. Good luck. Nancy


California Advocates for Nursing Home Reform (CANHR) is a great resource for all issues dealing with elder care facilities. They are a non-profit organization and offer free advice on many subjects, including medical and medicare. They have a legal referral service as well. Phone is 415-974-5171 bl


I cared for my Alzheimer'd 90+yo Mom in my home for 5+ years, in NY, & here in CA. Call the very kind Janet Brush at ''Senior Alternatives'', (on Park in Glenview area) call Toll Free: 1-888- 452-4290 URL: http://www.bayareaseniorcare.com/about.html She definately will be able to advise you on this very difficult issue. The ''scare'' tactics used by that facility on your Mom are unforgivable. Best of luck. former ''Sandwich-Gen'' Mom


Alzheimer's facilities and resources

June 2006

My good friend's 83-year-old mother, who has lived alone for many years in the Central Valley area, was recently diagnosed with Alzheimer's, and her condition seems to be deteriorating rapidly. My friend has thought about hiring someone to help care for her at home, but has concluded that her Mom may benefit from more social contact and some structure to the day. Does anyone have a recommendation for an Alzheimer's residential facility in the East Bay? (My friend lives in Montclair, works in the city.) Her mom still has some good moments and would prefer an apartment or private room and bath. We'd also appreciate any suggestions for other resources, agencies, books, support groups, etc. As you can imagine, my friend is feeling really overwhelmed and sad. Thanks very much for your help.


Hi there. I would highly recommend that your friend get in touch with the Alzheimer's organization. They have tons of resources and a 24/7 line for family members.

Every woman on my mother\x92s side has died of this disease and it's a horrible disease for family members to deal with. The Alzheimer's Organization helps family members with resources, suggestions and also raises money to help fight the disease as well as lobby to the government to allocate more research and funding to help find a cure. Words cannot describe what this disease does to not only the person with the disease but the family members who have to watch their loved one fade away.

The Bay Area main chapter is located in Mt. View. I have attached their website and phone #\x92s. You can help support your friend by participating in the Walk for a Cure in October on Treasure Island. It\x92s a wonderful event where many of us celebrate lives lost as well as the fight to preserve the lives still yet to be affected by the disease. I wish your friend and her family all the best.

http://www.alz.org/Services/overview.asp

Jennifer


My bipolar mom living with us, showing signs of dementia - where can she go?

March 2006

My mother is 65 years old, is bipolor and may have the onset of dimentia. She currently lives in an in-law on our property but her acute mania/paranoid delusions is making living anywhere near her impossible. She believes my partner has bugged her house, violates her in the night, is having an affair, has stolen items. moves items just to make her crazy..... - we don't have a key to her house and with and even with an added deadbolt my mother has has no sense of security so she refuses to sleep. She has gone to neighbors asking them to hold important papers, my partner fears for her own safety, and our two year old regularly witnesses bizarre behavior and has to deal with her grandma acting like a jealous sibling. The problem: we want her to leave but she has spent all of her savings and has not been on stable treatment (though Kaiser is trying). She may be able to move to live near other relatives out of state, but shouldn't in her current state. We need a short term and long term solution. Eventually she will need to be in some sort of assisted living but we have no idea where to start to find options. Any advice? barely managing


My heart goes out to you in this very difficult situation. It definitely sounds like the onset of dementia. This is exactly what happened to both my grandmother 12 years ago and her sister, within a year of each other. They exhibited almost identical behavior to what you're describing in your first paragraph. She lived several thousands of miles away from my father in Florida, so my sister was the one who first alerted us to the severity of her behavior. I strongly encourage you to find her an assisted living facility specialized in dementia/alzheimer's care and try and get her in asap. They are out there. The trouble is the cost. The way my father did it was that he put her in the facility and used all her personal resources to pay for it until her money literally ran out; now she has no money and medicare is paying for it. Once you are in a good place, by law they cannot make you leave. We found the biggest challenge was finding the best place and then getting a spot. That did take some time, so you might have to wait a bit. Sometimes the waitlist can be a year or two. The only other suggestion I have is to find a great geriatric support specialist - a doctor, nurse, social worker, or other professional who knows the ropes and can help you work the system. It can really be miserable to try to figure it out alone. By the way, it has been 12 years now, my grandmother is 96 years old, and has been cared for very well all these years by specialists trained in working with dementia patients. It has been a safe, secure, positive setting for someone who is so terrifed of the world. Good luck. granddaughter of a dementia patient


I would recommend calling Adult Protective Services (in Contra Costa the # is (877) 839-4347) in your county and asking them to come out and visit your mom. They cannot make your mom talk to them, but they could possibly help you with some options as to how to handle the situation. They could also assess your mom and see if she might have dementia. One option is to become your mother's conservator, if she does have dementia. For that, you would contact the probate division of the superior court in your county and APS could help you with this. Good luck! shauna


I am sorry to hear about your Mom. Hang in there! There are some great resources for family members.

The National Alliance for the Mentally Ill (NAMI)has really good class called Family to Family. It's run by family members for family members of people with brain disorders and it is a great resource. The Nami affiliate in Alameda County telephone # is (510)835-5010, or (510)524-1250. (925)646-5798 in Contra Costa. Or go to nami.org. I took it after my husband was diagnosed with Bipolar Disorder, and it has helped so much.

There is a family advocate in Martinez that is really wonderful. Gloria Hill (925)957-5146. She may be able to refer you to someone or place in your area.

I wish you all the best. I hope you find the help you need. anonymous


How to find a nursing home for Alzheimer patient

March 2006

Does anyone know a loving care facility for an elder with Altzheimer's? Also appreciated would be clues on moving a person with Alzheimer's from her home to such a facility. Thanks.


The options for assisted living facilities vary from private home board/care to larger places. If you belong to an HMO like Kaiser, your loved one will have a social worker assigned to you can give you a referral agency to contact or a list of places in your area. You can also contact the closest Alzheimer Association chapter for guidance. My mother is in a wonderful place called Aegis in Pleasant Hill but it is extremely expensive and would be out of her financial reach were it not for long term care insurance. I am happy to go into more detail so send me an email me if you like. Martha


Mom's recent Alzheimer's diagnosis

June 2002

My mother was recently diagnosed with early stages of Alzheimer's. I'm wondering if anyone else is sharing this experience? If so, what books have you found useful? How does one explain this to a four-year-old? It's not bad yet, but I worry that as we talk about it, he'll need to know something about what we are worried about. Also, I'm just wondering if anyone is up-to-date about the research around the disease, or can share their experiences with any aspect of this. Thanks Julie


I am the primary caregiver for my father-in-law, who lives with us and who was diagnosed with Alzheimer's about 5 years ago. First of all, was your mother diagnosed by a family practicioner or by a neurologist or other specialist? (My father-in-law was diagnosed by the Alzheimers' Disease Center, which is affliated with UC Davis, but housed at the VA medical center in Martinez. Their number is 925-372-2485.) I ask, not only because diagnosis of various dementias (there are many causes other than Alzheimers' ) is getting more sophisticated all the time, but because too many primary care physicians still have the attitude that there isn't much that can be done about Alzheimers'. There is! There are now a number of medications which, when begun in the early stages, have proven effective in slowing the progress of the disease in many people. My father-in-law takes Aricept, one of the first, and in the two years that he has lived with us has experienced only a moderate, slow decline. There are also drugs that can help with some of the symptoms some Alzheimers' patients have, i.e. anti-Parkinson's drugs for Parkinsonian-type symptoms, pscychiatric drugs for agitation, etc. I recommend having your mother treated by a neurologist as family practicioners will sometimes prescribe medication for Alzheimers' without knowing a lot about the drug or optimum dosages. I discovered that my father-in-law's family practicioner had had him on what is considered a starting dose of Aricept for two years. When I took him to a neurologist, his Aricept dosage was increased and a medication for Parkinsons- like symptoms was added, with beneficial results. You should definitely join the Alzheimers' Association(925-284-7942), which has a very informative newletter that keeps families up-to-date on research. They can also help refer you to educational and care programs. Hooking into services is key. People with Alzheimers'do best when they and their families have support systems. Alzheimers Services of the East Bay is another great organization. My father-in-law attends an Alzheimers' Adult Day Health Care center it operates in Berkeley's south campus area. Their phone # is 510-644-8292. They have an early stage support group for couples (or any client and their caregiver) where people in the early stage meet together with a facilitator to talk about what they are going through, while their caregivers meet separately to talk about what they are dealing with. They also have educational workshops, which I recommend. There are lots of good books out too (The 36 Hour Day is a classic.) Education--about the disease and how best to care for people with it--definitely helps, as do support groups. Just keep in mind that there is a wide variation in symptoms and not everything horrible that you hear about is necessarily going to happen to your loved one. Alzheimers' is an incurable, progressive, but often slow-to-progress disease, the diagnosis isn't the end of the world but the beginning of a process and you and your mother just have to have the attitude you'll deal with it. Prepare yourself for what may come, but take one step at a time. I am very lucky, my father-in-law is very easy to care for, not only is he declining slowly, but he has retained the wonderful, calm, easy-going, positive personality that he has always had. At 89, unable to remember most of the time what day it is, what he's been doing or what he's going to do next,he can still manage basic daily living skills and, best of all, he still enjoys his life and loves people. He is a constant inspiration to me.

As for your four-year old, he'll observe and make his own sense of it. I'd treat it like any tough subject, in the beginning tell him something simple like, ''Grandma has a sickness that makes her forget things,'' and let his questions guide you from there. Just be honest and tell him what he wants to know. He'll probably only absorb as much of the discussion and emotion going on as he can handle, kids have a great self-protection mechanism that way. Feel free to contact me if you would like to talk. Marilyn


The local Alzheimers Association was a lifesaver when my father was found to have Alzheimer's. The people who donate their time to facilitate the discussion groups have family members with Alzheimers themselves, and guide the talk in supportive directions with specific helpful suggestions. (Call 800-660-1993 to locate a group near you.) Also check out Complaints of a Dutiful Daughter, a wonderful (and funny!) film by Deborah Hoffmann about her mother's descent into Alzheimers http://www.pbs.org/pov/films/com.html Merry


The Linus Pauling Award recipient of the year, Dr. David Perlmutter, has a book (2000) and web site called BRAINRECOVERY.COM. The information he offers for all kinds of brain insults, including Alzheimer's, is straightforward and nutritionally supportive. I heard him speak at a symposium on ''Disorders of the Brain'' and was very much impressed by the comprehensive program he outlines. He's located in Naples, Florida, alas. The book is thoroughly referenced with clinical evidence and double-blind studies of the efficacy of his approach. Nori


I work for a clinic specializing in the treatment of dementia. I have no specific advice about young children, and I'm sure there are many ways of handling this. In general, there is a lot of information about Alzheimer's disease. Two very useful websites are those of the Alzheimer's Association (http://www.alz.org/) and the Family Caregiver Alliance (http://www.caregiver.org/). There are recommendations for more reading, and these are a good starting point for more resources and information about treatment and research. Some people find caregiver support groups very useful, especially for personal advice about how to handle family issues. The organizations I mentioned can also be a resource for finding local support groups. Good luck HOWIE


I missed the original post, but if you have a parent with Alzheimer's and are looking for a support person from this list, you may email me. My mom has Alzheimer's, and I have had a really hard time getting to the support groups I know about. Sybil


A kid, a baby, and a mom with Alzheimer's

July 2001

I am in the proverbial crunch: a kid, a baby and a mom with Alzheimer's. We're getting to the point where my mom may soon need an Assisted Living situation. I need:
-Advice about local support groups for ME
-Recommendations for care facilities/homes in Berkeley where staff are trained for Alzheimer's care. My mom is in the early stage still.
-A chat room url or email list address if such a thing exists for Alzheimer patients' family members, care givers etc., especially in this area (I wish there were a UC Children list too!) Sybil


I don't have any personal experience with this, but here's some information from someone on another mailing list I am on. I have included this information with their permission.

Here are some websites:

  • http://www.alfa.org/ (assisted living federation)
    • http://www.healthandage.com/ (novartis gerontology site)
      • http://research.aarp.org/il/adultch.html link to AARP summary of articles on adult children dealing with issues of finding housing for parents
        • http://www.springstreet.com/seniors/index.jhtml?source=a1rnftjt597 senior housing net search page

          some other possibly useful links

          • http://www.elderweb.com
            • http://www.livingstrategies.com
              • http://www.caregiversadvisorypanel.com/entercarethere.asp
                • http://www.carethere.com/
                  • http://www.senior.com/

                    there's a lot of content and searchable archives on these. It's a tough tough issue.

                    Apparently Caregivers.com has an e-mail list which some folks have found very helpful.

                    Evaluation -- UC Davis Alzheimer's Disease Center at Martinez VA (they can give you the phone number). Free screening with Medicare coverage by team led by neurologist -- results presented by team to family with patience and care -- lots of good advice and pointers for cases that aren't necessarily Alzheimer's (as our wasn't).

                    Placement assistance (no charge to family) -- I've used two and believe they'd be very happy with this one -- David Wylie (800) 348-1979. (He talks with the family and recommends a short list of appropriate places, based on needs and budget, that have openings . . .).

                    Assisted living provider -- We'd used Flo Reyes, a nurse who has a small number of residences in Concord -- one that's beautiful, new, with a view, and good for couples -- and is licensed to take patients who may develop some confusion or senility, (925) 827-9608.


                    See: http://www.uhs.berkeley.edu/FacStaff/CARE/eldercare.htm for campus resources if you are a UCB affiliate.
                    I wanted to respond to the request for support in caring for a parent in early stage Alzheimer's. First I want to say that it is so great that you have acknowledged that Alzheimer's is the problem. I remember when I finally acknowledged that my mom was affected by Alzheimer's, and it was a hard thing to do. I have a number of friends who are unwilling to acknowledge that their parents have Alzheimer's, and see it as depression or tiredness at the end of the day, etc. Unfortunately many family doctors seem unwilling to acknowledge that their patients are affected, and people who are in the early stages, or even later stages are not a good source of information on their own functioning. It's only people who know them well who can really see the problems, and even then it's sometimes hard to see if you don't live with them. To my mind the real tragedy is that many people with Alzheimer's can benefit from drugs like Aricept - my mom amazed her neurologist by remaining at the same mental level for 3 years while on Aricept. Also people with Alzheimer's need a lot of support because they really cannot make decisions about such things as financial matters or their ability to drive a car, although they still think they can. Consequently they can run into trouble very easily - and there are people out there who will take financial advantage. I know I'm preaching to the converted, but I think it's important to let other people know.

                    I was on a chat e-mail list that the Family Caregivers Alliance signed me onto. It was helpful, especially for information on the course of the disease. I had no idea that the average number of years living with Alzheimer's was 13 years. It got me to thinking a lot more long term. There were a lot of people who were spouses taking care of their wife or husband, and those messages were hard to read, but nevertheless a window into an amazing group of courageous and caring people.

                    I just now searched Yahoo under caregiving and the first match had the Family Caregivers Alliance: http://www.caregiver.org/ plus other websites that looked good.

                    Just to tell you how we supported my mom - we had people provide 24 hour care in her house. Luckily early on we found someone to actually live there, and consider the rent and food as part of her pay. That was very inexpensive, it turned out - $750 per month. Even with us taking over on weekends and one evening a week, it was hard on her, and after 4 years she left. Then we had people come in at what was (a year and 1/2 ago) a going rate of $100 dollars a day. We spent days there too, so it was a little better than it seems. As you can tell, my husband helped a lot by being with our baby daughter during all the time I had to spend, and I have a sister nearby who managed things in a way I would have had trouble doing. Luckily mom had the financial resources for paying the caregivers. It took a lot to find people, but we did find some very good people. We did have one person who stole some very old family things, though, and disappeared. We didn't even think of that problem. Mom lived near UC, so we also advertised at UC for a student to live in a front room of the house for free and help out being our eyes and ears and spelling our caregivers. We found an unbelievably nice and helpful student from Japan who has become a family friend. We didn't get to the stage where mom couldn't live at home, although we were beginning to consider it - she died of metastisized colon cancer at home a year and 1/2 ago - so I'm not helpful with that inevitable stage.

                    We did have a financial planner, Tim Millar (510) 792-9395 (in Fremont, unfortunately) who had a parent with Alzheimer's and was incredibly helpful in untangling mom's finances, handling investments appropriately, and is very familiar with MediCal, although we didn't end up having to use it. Susan