Caring for Parents with Alzheimers
Berkeley Parents Network >
Advice >
Elders >
Caring for Parents with Alzheimers
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’s 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 #’s. You can
help
support your
friend by participating in the Walk for a Cure in October on
Treasure Island. It’s 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
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
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
Jan 2002
My neighbor is caring for her husband who is increasingly incapacitated by
Altzheimer's disease. She is doing it all by herself and I worry about her. He is losing
some gross motor function and she is unable to pick him up when he falls. She has to
try to talk him through the process of standing up! Reading between the lines, I
believe she is also anxious about the impatience she feels towards him; understandable
impatience, but guilt-inducing, I'm sure. She seems to have no source of professional
support or respite care. There must be an organization out there for caregivers and
families of Altzheimer's patients. Can anyone help?
Family Caregiver Alliance is still a great resource for those dealing with
adult onset dementia. My friend Caitlin does "weekend camps" for them...the
patient is sent to an interesting weekend camp so that the caregiver can
have a bit of time off. Caitlin is creative, experienced and caring so I'm
sure her camps are a wonderful experience for those who attend!
Dorothy - San Francisco Public Library
Approximately 50% of caregivers of persons with
alzheimers will become clinically depressed and there
are many resources to help both the caregiver and the
person with the disease. One place to start is the
alzheimer's association. Also, every county has
services geared towards seniors, Alameda and Contra
Costa counties being no exception, and has an
information and referral line which can help find
resources available in the community. You will likely
find this number in the service number pages of your
yellow pages or on the county's website on the
Internet. Most bay area counties have someone, such as
a social worker or nurse, that can come out and assess
the family, any safety issues, and refer them to
helpful resources. There are also some resources
designed to help people with alzheimers continue to
live at home and give their caregivers respite, such
as adult day care. Thanks for your concern for your
neighbors. It sounds like this family is especially
needing help. The fact that he is falling is a huge
safety issue for both of them. It also sounds like
she is being stretched to her limit. Good luck.
To the person looking for help for an Alzheimer's caregiver - the Family
Caregiver Alliance is an excellent place to start. Their website is very
good, at http://www.caregiver.org.
The phone number is 800-445-8106, or
415-434-3388. They run caregiver support groups, and can give lots of
advice and information for caregivers. Good luck to your neighbor.
Jeanine
Call Alzheimer's Services of the East Bay, 644-8292, 2320 Channing Way,
Berkeley. I understand they have a day program for people with
Alzheimer's. I know they have a bus to transport people to and from
home. I don't know if there's a waiting list. I do wish your neighbor
well. I watched my wonderful elderly neighbor nurse her husband through
Parkinson's until he died. She refused all help, except occasionally to
ask my husband to put him back in bed when he fell out. I think older
people often have a hard time asking for or accepting help. Do keep in
touch with her and give her what support you can.
Louise
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
Home |
Reviews |
Advice |
Members |
Post a Message
Join BPN |
Help |
What's New |
Search |
Contact Us
Last updated: Apr 3, 2007
Copyright © 1996-2008 Berkeley Parents Network
The opinions and statements expressed on this website
are those of parents who subscribe to the
Berkeley Parents Network. Please see
Disclaimer & Usage for
information about using content on this website.