Caring for Parents with Alzheimer's & Dementia
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 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
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
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
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
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
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
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.
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
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
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
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
- http://www.springstreet.com/seniors/index.jhtml?source=a1rnftjt597 senior housing net search page
- 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.healthandage.com/ (novartis gerontology site)
- http://www.alfa.org/ (assisted living federation)