Caring for Parents with Alzheimers & Dementia
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Caring for Parents with Alzheimers & 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
Family Caregiver's Alliance
A Place for Mom
Best of luck!
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
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
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
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
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.
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
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''
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&Dads 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!
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.
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.
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
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
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
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.
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!
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.
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.
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.
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
parents and now just with my mother who has mid-stage Alzheimers. The
Association and the Family Caregivers Alliance are invaluable resources for
needing support. It's a challenging road and there is much more to say, so feel
contact me privately if you like. And best of luck.
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...
You might think of contacting your local adult day care center. They may have
resources for you. Im not sure where you live, but here is one resource.
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.
You might want to try contacting the Alzheimer's Association, Alzheimer's
the East Bay, and/or the Family Caregiver's Association (in SF) re: caregiver
the sandwich generation or children with small children caring for their aging
There are a lot of caregiver support groups around the Bay Area, so you will
find what you are looking for. good luck.....
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.
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,
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
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
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
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
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.
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
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
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
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.
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.
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!
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.
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
''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.
check out California Advocates for Nursing Home Reform.
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.
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
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 motherís 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 #ís. You can
friend by participating in the Walk for a Cure in October on
Treasure Island. Itís 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.
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
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
Feel free to contact me if you would like to talk.
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
Also check out Complaints of a Dutiful Daughter, a
wonderful (and funny!) film by Deborah Hoffmann about her
mother's descent into Alzheimers
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.
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
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
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.
-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!)
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
children dealing with issues of finding housing for parents
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
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.
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
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.
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