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Medical Forum / Diseases and Disorders / Alzheimer's / January 2005

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Thinking into the future

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Laurie Butcher - 18 Jan 2005 21:37 GMT
My Mom was recently diagnosed with Early Onset Alzheimer's. She is in the
very initial stages, and most of the time you might forget that she has any
problems at all. However, everything that I have read indicates that this is
an aggressive form of Alzheimer's and moves much more quickly. My main
concern is that we as a family are ready (if that is possible) to face this
as her memory begins to deteriorate. What can we be doing now to prepare for
the life that awaits us. Should my parents consider moving closer to us,
will my Dad have to retire early, should we be looking into the possibility
of private caregivers, will there long-term care insurance cover this?

If you knew then what you know now, what would you have done to prepare for
the life that you now live as caregivers?
Tumbleweed - 18 Jan 2005 21:52 GMT
> My Mom was recently diagnosed with Early Onset Alzheimer's. She is in the
> very initial stages, and most of the time you might forget that she has
[quoted text clipped - 7 lines]
> for
> the life that awaits us.

> Should my parents consider moving closer to us,
> will my Dad have to retire early, should we be looking into the
> possibility
> of private caregivers, will there long-term care insurance cover this?

yes, maybe, yes, dont know. Whether they do move and your father retires
depends on so many factors no one here can advise. but without live in help,
(eg if your father doesn't retire) leaving a person with Az alone doesn't
remain practical for very long as they deteriorate.

> If you knew then what you know now, what would you have done to prepare
> for
> the life that you now live as caregivers?

Join the local Az society.
Get POAs immediately (I screwed up on that)
Double check the medication, get a doctor experienced in Az.
Get on medication as early as possible.

And, be prepared that a point will come where one person *cannot* be a
caregiver 24x7 without putting both in danger, accept that care will be a
better option than your father looking after her (at some point), unless you
can afford live-in care.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Gwen Love - 18 Jan 2005 22:29 GMT
Also, get a copy of "The 36 Hour Day" by mace & rabin.
Gwen

> > My Mom was recently diagnosed with Early Onset Alzheimer's. She is in the
> > very initial stages, and most of the time you might forget that she has
[quoted text clipped - 31 lines]
> better option than your father looking after her (at some point), unless you
> can afford live-in care.
Baird Stafford - 21 Jan 2005 08:31 GMT
<snip>

> Get POAs immediately (I screwed up on that)

Make certain that the Powers of Attorney include *both* a Durable Power
of Attorney and a Durable Power of Attorney for Health Care.  In the US,
the second is REQUIRED in order to get around HIPPA (which isn't quite
the right acronym, but...) if your loved one becomes incapable of caring
for himself or herself!

Blessed be,
Baird

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Newstaff, Inc. at newstaff.com

Evelyn Ruut - 18 Jan 2005 22:44 GMT
> My Mom was recently diagnosed with Early Onset Alzheimer's. She is in the
> very initial stages, and most of the time you might forget that she has
[quoted text clipped - 14 lines]
> for
> the life that you now live as caregivers?

Tumbleweed has given you good answers.   If I were you I would move on all
counts towards any eventuality that can come along.   When a person has
alzheimers disease it seems that caregivers are always so busy caring for
them, that it becomes harder and harder to get other things in place.
Especially things like moving house.

Do whatever you can do now.  I am not saying to treat the person as though
their disease is worse, but to remember that it will get worse, and when it
does you may find it difficult to get things done.

Get a good elder law attorney to set things up for you..... I cannot stress
how important this is.

Do what you can to enjoy your loved one and to make her comfortable and
happy as she can be.  Right now is as good as it is going to get, so make it
worthwhile.

Don't overestimate her abilities.  She may not be able to remember if and
when she took her medication, how to get from her home to the local post
office, or how to do some simple task.  As of the moment it might be OK, but
this disease can get worse quickly in an unpredictable way.  Be aware of
that.

Joining an alzheimer support group is a great help.  Read up on the illness
and learn what to expect.

Welcome to the club nobody wants to join.

Oh, and one more thing.  Be absolutely certain about your mom's diagnosis.
There are other illnesses that look and act just like alzheimers.  Some of
them are treatable.

Signature

Regards,
Evelyn

(to reply to me personally, remove 'sox")

Anthony Shipley - 19 Jan 2005 03:42 GMT
>Get a good elder law attorney to set things up for you..... I cannot stress
>how important this is.
Can you be specific about what specific issues need to be addressed??

>Do what you can to enjoy your loved one and to make her comfortable and
>happy as she can be.  Right now is as good as it is going to get, so make it
[quoted text clipped - 5 lines]
>this disease can get worse quickly in an unpredictable way.  Be aware of
>that.

Expect an increasing burdon on the primary caregiver. If you have the
opportunity, gather around a support group/network of friends and family to
assist as things deteriorate. Expect that some will express regret but not offer
any assistance at all. On the other hand, others (sometimes, those you might
least expect to) will be very supportive.

Expect a continual deterioration. Hope for more effective drugs and, ultimately,
for a cure.

>Joining an alzheimer support group is a great help.  Read up on the illness
>and learn what to expect.
>
>Welcome to the club nobody wants to join.

>Oh, and one more thing.  Be absolutely certain about your mom's diagnosis.
>There are other illnesses that look and act just like alzheimers.  Some of
>them are treatable.

-
Mod as a hooter!
Evelyn Ruut - 19 Jan 2005 04:18 GMT
>>Get a good elder law attorney to set things up for you..... I cannot
>>stress
>>how important this is.

> Can you be specific about what specific issues need to be addressed??

Money issues most of all, wills, living will and DNR, arrangements for care
in later illness..... and more.

Signature

Regards,
Evelyn

(to reply to me personally, remove 'sox")

Mary_Gordon@tvo.org - 19 Jan 2005 10:10 GMT
I'm a Canadian, and with our universal health insurance and abundance
of not for profit institutions and facilities, the costs of looking
after someone with a chronic illness like AD are much less crippling
than in the US.

However, I answer Alzheimer's questions for allexperts.com and I get a
LOT of questions from people in the US about insurance rules, Medicare
and Medicaid. The US health care and insurance systems are complex and
it does pay to seek expert legal advice about estate planning and
insurance planning if you have someone recently diagnosed with AD.
Smart planning can save your family huge amounts of money - there are
ways to arrange things to preserve assets, particularly if you take
steps early (i.e. Medicaid rules vary from state to state, and the
"lookback" period can be quite long).  I read a blurb recently that
suggested that good planning saved an average of 30K per family - not
inconsiderable. Your dad will need maximam assets preserved not only to
help your mother, but for HIS future. You need someone who really knows
what they are talking about, specific to the state your family lives
in.

Mary G.
Mary_Gordon@tvo.org - 19 Jan 2005 00:32 GMT
I'd plan for worst case and then be pleasantly surprised if my
preparations were slightly ahead of the need. In order to  have plans
ready to go requires you to think the unthinkable, and get ready for
it, long before you want to, and long before you are ready. You won't
feel ready, you won't feel its needed right now, you will be praying
you are being premature about planning, but do it anyway.

Keep firmly in  mind that this is not just a disease of memory. If it
were only memory that was impacted, it would not be nearly so terrible
a disease. Her ability to reason, talk, perceive, her motor skills and
coordination, her emotional control, sleep patterns - everything
controlled by her brain will gradually slip away.

If your parents do have the option of moving closer to family support,
now would be the time to do it. Your mother can still help your dad
with the move, she can still adapt to new surroundings, so sooner is
better than later. Urge your father to look for living quarters that
have a simple and on one floor. Think about the potential for your
mother to need physical help while still being looked after at home, so
things like a large bathroom with room for a shower chair, grab bars,
and for an assistant to manoever around a wheelchair etc. are helpful.

Get all the legal stuff in order - the powers of attorney for finances
and personal care, the wills, the estate planning and insurance. A
consultation with an attorney is a good plan to make sure your family
hasn't forgot some aspect of the legal and financial planning that has
to be looked after. Your mother will not be legally competent to sign
documents shortly, so its crucial not to wait.

Now is also the time to seize the day regarding her wishes - talk to
her about a living will, under what circumstances she would want a DNR
order, funerals. I know this is horrible, but I promise you, everyone
will feel much more comfortable about future choices if they know her
preferences are being honored for some of these things.

I'd also get out the family photo box and get her writing names or
telling stories about the people in the pictures. Shortly she won't be
able to, and you will be  haunted by the faces of ancestors no one can
identify.

Encourage  your father to check out all the local resources, from home
care agencies to day cares, respite care, assisted living facilities,
AD wards and nursing homes. Hopefully, he won't need their services for
a while, but just having a clue where to turn and some sort of plan in
place will save so much stress later - particularly if things take a
sudden turn.  Learn as much as you possibly can about whats out there
for support, how you sign up or qualify, what it costs, etc. etc. Get
him thinking creatively about accomplishing the chores of daily life
with the least stress (i.e. he needs to be able to ask for help and not
try and do everything himself, whether that means he gets groceries
delivered or getting a local kid to tackle the yard work).

If I were your father, I would be cautious about retiring before he
needs to. For many men, besides needed income, work is a welcome
distraction and a source of companionship and self esteem. Only he can
make the decision about what he can tackle in terms of direct
caregiving, but if he is relatively young, his life will go on, and
work (even part time) may seem like a blessing to help him feel like
part of the world.

Because caregiving becomes so all consuming, find ways to give your
father breaks from it. He will need evenings or days off, whether to
accomplish errands, or visit with friends, play a round a golf,
whatever. Don't wait for him to ask...not all caregivers are great at
recognizing their need to look after themselves.

Mary G.
Anthony Shipley - 19 Jan 2005 03:47 GMT
>If you knew then what you know now, what would you have done to prepare for
>the life that you now live as caregivers?

I think this forum is the most valuable source for anybody with or caring for
somebody with AD.

-
Mod as a hooter!
Dennis P. Harris - 19 Jan 2005 11:18 GMT
> If you knew then what you know now, what would you have done to prepare for
> the life that you now live as caregivers?

well, i *was* a caregiver, but she's gone now.

you really need to educate yourself (and your father, who will
bear most of the burden).  get a copy of the 36 hour day by mace
and rabin (at any largish bookstore) for your dad as well as one
for yourself.  find a caregiver support group through your local
AD association (see www.alz.org to locate).

welcome to the group no one wants to join.  you and your family
have my sympathy.

others have already said much of what i would tell you.  the most
important thing is to plan for the inevitable.  denial is the
biggest hindrance to having good care in place in advance,
whether it's in a facility or at home.

as far as the long term care insurance is concerned, you need to
read the policy, since most of them have a maximum total amount.
Boydette - 23 Jan 2005 09:09 GMT
Hi Anthony nice to meet you

In our case my sister has power of attorney over medical and financial
decisions....we applied for medicare for both of them which was
granted....we  also have living wills signed by both of them and in the
case of my dad who is in a nursing home and has leukemia as well as
dementia we have a DNR in place (his wishes) and have signed him up for
hospice....it is difficult in the case of my mom who is still somewhat
functional....it is a waiting game for now

We ( me and my sis)  had to learn as we went I hope this helps you in
advance to prepare...Boydette
 
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