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Medical Forum / Diseases and Disorders / Alzheimer's / April 2004

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Early stages vent! (Long, sorry)

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Songbird - 25 Mar 2004 15:34 GMT
First -- I am so grateful to have this group here so I can blow off some
steam among those of you who are further along this awful journey than I am!

I haven't posted about my specific situation in a while. To recap: our
concern has been my mom, who although only 66 has had some "episodes" that I
suspect were truly TIAs. Since then her memory is spotty -- once she forgot
my last name, she thought it was Christmas two days in a row, she is
sometimes unsure what month it is (*I* am not always sure what *date* it
is -- but I can get the month!! <G>). She can only cook following recipes,
and if my dad leaves the house without her, she cannot remember where he has
gone. Last September my dad said it was time to move closer to doctors and
to someone who could help him with her when the time came, since they live
in a remote resort area an hour from doctors.  (I should say "good"
doctors -- her current doctor says nothing is wrong with her!!! He's of the
"she's just getting older" school.)

We put their house on the market and found a nice patio home under
construction here. The house has not sold yet (no one buys lake property in
the winter!), but their new home isn't finished either. Mom actually seemed
to perk up with the move preparations once she accepted the need. I think
having things to do has helped her focus when she has her "good" days.

Now my concern is Dad. Three recent incidents:

1. Two weeks ago he called to tell me his cordless phone would not work
after he replaced the battery. He couldn't figure out what to do. (I suspect
the phone, one of the earliest cordless models, has simply gone to Phone
Heaven.) Although it was plugged into the phone line and the power jack, he
had not thought to check either of those. I'll check it this weekend.

2. Last week, he called the Realtor he used down here to ask his advice
about taking the house off the market since it hasn't sold yet. Fortunately,
the Realtor here is a friend of mine who has been through this with his own
dad. He strongly advised against such a move since we are coming into prime
selling seasons, with all the azaleas and dogwoods in bloom. The Realtor
talked him out of it, and Dad has not mentioned it to me. Good thing the
Realtor did!

3. Yesterday he called to ask me to bring back one of the power tools he had
given me since he had discovered a small repair that he needed it for. I was
not home, and my husband of 23 years answered the home phone. Dad seemed
surprised a man was answering "my" phone. He then asked for my husband, and
when my husband, said "This is he," he asked for him again. Husband's voice
was obviously not familiar to him. He then launched into his request, just
saying he needed this drill, never identifying himself. Fortunately, I have
very few unidentified men calling to request power tools.

(On another call, he identified himself to my husband as his stepfather,
which was quite surprising, considering my in-laws have been married 46
years. Mom reminded him the proper word was "father-in-law," to which he
replied "whatever." It's scary but funny too. I guess you have to find the
humor.)

He is not willing to admit he is having problems, insisting nothing is wrong
with his memory. True, his memory lapses are not as obvious as Mom's, but
his judgment and problem-solving abilities are seriously deteriorating. (i
have posted separately today about his inability to deal with a tire
blowout.) This is an ex-Marine, ex-minister who always knew everything about
everything (whether he did or not). As soon as they get here, I hope to have
complete physical workups on both of them, under cover of "getting
established with the new doctor." A true diagnosis would help.

Evelyn, you are right. These early stages really *suck*!! Because their
money is very limited, I have been trying to keep them there until the house
sells so they don't have two house payments (even assuming they could get a
bridge loan of some sort). I am starting to think that will not be possible
and when their house here is completed in two months, I will have to move
them, two house payments or no. I can't help with the day-to-day stuff from
4-1/2 hours away. He *says* he has no trouble with the finances, but
considering the other incidents, I wouldn't count on it. Fortunately, I do
have POAs already recorded with the clerk of court and ready to go.

And part of me is really angry -- and yes, frightened -- that I have to do
this *now* -- I am only 43. I expected to face this in my late 50s or early
60s -- my parents have longevity genes galore. Someone once told me that the
day you truly become an adult is the day that you realize that your parents
will not live forever. I was not ready to be an adult yet!

And then another part of me is ashamed that I feel this anger and
resentment -- my prescribed role in the family is "the good girl," while my
brother is the "still a kid at 40" one. Part of me thinks I should go ahead
and join the local caregivers' support group, and part of me says "If you
think THIS is tough, what are you gonna do when ..."

Anyway, thanks for letting me vent. My brother just says "I know you'll do
fine, sis," and my husband says "You're borrowing trouble." Nice to come
somewhere that people know what I am talking about and don't dismiss my
concerns

Songbird
Gwen Love - 25 Mar 2004 19:58 GMT
Songbird, it seems you do have a lot of responsibility which is hard on
you.  I don't envy all you are having to go through with trying to sell
their house and get them moved.  I will pray for the house to sell soon
because you do indeed need to have them near you.
Having them both "set up with new doctors" is a very good idea.  And it
would be a good idea to go ahead and join a local caregivers' group.  The
first meeting may be discouraging to you, but you will get a lot of useful
information that you can use later. Come here to vent any time; we do
understand.
Gwen

Signature

-----------------------------------------------------------
"If you're going through hell, keep going."
Winston Churchill

| First -- I am so grateful to have this group here so I can blow off some
| steam among those of you who are further along this awful journey than I am!
[quoted text clipped - 86 lines]
|
| Songbird
Des - 25 Mar 2004 20:27 GMT
<snipped>
>And then another part of me is ashamed that I feel this anger and
>resentment -- my prescribed role in the family is "the good girl," while my
>brother is the "still a kid at 40" one. Part of me thinks I should go ahead
>and join the local caregivers' support group, and part of me says "If you
>think THIS is tough, what are you gonna do when ..."

One of the first things I noticed was how we all had to go through
some role changes.  My dad's a retired Army officer but at home, Mom
ruled.  He was afraid to make any changes or decisions at home without
her permission, even when it was obvious that her judgment was
impaired.  I had to step in more, be more insistent, which wasn't
comfortable for me.  The emotions are another whole issue... just
remember that your feelings are natural, and nothing to be ashamed of.
Support will help you sort out how to deal with them, whether it's
here or with other relatives or in your local group.

>Anyway, thanks for letting me vent. My brother just says "I know you'll do
>fine, sis," and my husband says "You're borrowing trouble." Nice to come
>somewhere that people know what I am talking about and don't dismiss my
>concerns

Your brother is going to have to grow up someday.  I wonder if there's
some way to get him to take some responsibility?  Maybe just a little
to start, like calling them every other day or so - you know, break
him in slowly.  As for your husband, he may not realize what's
happening and, too, on the other hand, you can only do what you can
do, some things are beyond our control.  Take it one day at a time.

I'm sorry but it sure sounds like you're about to get double trouble,
with your dad's symptoms.  You may have to be considering getting them
onto Medicaid sooner rather than later.  Or, if there's an extra
bedroom in their new place, would they accept a live-in "housekeeper"?

~Des
Dennis P. Harris - 26 Mar 2004 08:15 GMT
> Part of me thinks I should go ahead
> and join the local caregivers' support group, and part of me says "If you
[quoted text clipped - 4 lines]
> somewhere that people know what I am talking about and don't dismiss my
> concerns

well, you *do* need to join a support group, and now.  better to
have the info and contacts in advance.
pitirish - 27 Mar 2004 05:45 GMT
I've read these admonitions, and I have been personally urged by many
acquaintances to join a support group to get some help with my wife who
suffers from AD. I have the impression of a support group as being a bunch
of well-meaning folks gathered in a sympathy circle sharing punch and grief.
Is there more to it than that? I find a lot of good ideas and the presence
of people who share many of the same problems I'm going through right here.
How does a support group differ?

go'l.

> > Part of me thinks I should go ahead
> > and join the local caregivers' support group, and part of me says "If you
[quoted text clipped - 7 lines]
> well, you *do* need to join a support group, and now.  better to
> have the info and contacts in advance.
Tumbleweed - 27 Mar 2004 08:07 GMT
I know my mother found hers helpful,She did get useful advice re local
resources and things to do or not to do when dealing with the relevant
authorities. but what's to lose by  going along a few times? If it doesn't
work for you after a few visits, don't go any more.
Signature

Tumbleweed

Remove my socks for email address

> I've read these admonitions, and I have been personally urged by many
> acquaintances to join a support group to get some help with my wife who
[quoted text clipped - 19 lines]
> > well, you *do* need to join a support group, and now.  better to
> > have the info and contacts in advance.
Dennis P. Harris - 27 Mar 2004 08:39 GMT
> I have the impression of a support group as being a bunch
> of well-meaning folks gathered in a sympathy circle sharing punch and grief.

i don't know where you got your impresson, but that's not it at
all.  the folks in support groups are too busy to spend much time
grieving.

> Is there more to it than that? I find a lot of good ideas and the presence
> of people who share many of the same problems I'm going through right here.
> How does a support group differ?

it's very similar, BUT there are advantages because it's local.
folks share info about *local* resources, local concerns and
needs, all stuff you won't find here.  the folks who run these
groups want to help families like yours, but may not know that
you're out there.

networking here is great.  networking locally to get help with
your LO from someone who understands what you are going through
is better IMHO.
Des - 27 Mar 2004 09:05 GMT
>i don't know where you got your impresson, but that's not it at
>all.  the folks in support groups are too busy to spend much time
>grieving.

>it's very similar, BUT there are advantages because it's local.
>folks share info about *local* resources, local concerns and
>needs, all stuff you won't find here.  the folks who run these
>groups want to help families like yours, but may not know that
>you're out there.

>networking here is great.  networking locally to get help with
>your LO from someone who understands what you are going through
>is better IMHO.

Another facet of the support group: it's usually part of a larger
organization which supports research and funding for research, such as
Alzheimer's Association.

~Des
Robert E. Lewis - 27 Mar 2004 09:04 GMT
> I've read these admonitions, and I have been personally urged by many
> acquaintances to join a support group to get some help with my wife who
[quoted text clipped - 3 lines]
> of people who share many of the same problems I'm going through right here.
> How does a support group differ?

I've attended the local support group just a few times, and the help has
been narrow but invaluable:

I got the impressions of people who know first-hand of all of the local
neurologists, their positive and negatives, enough so to have a preference
of the two my father's GP suggested;

I got passionate 'reviews' of the local nursing home options - enough so
that while I'll give them a look when and if the time comes, I probably
*won't* put him in the facility that would have been my first guess;

I got the name of a local for-profit caregiver service that supplies in-home
help; useful when/if the time comes.

The personal interaction was much what I find here - but there is a
difference in having a real-time conversation and exchanging posts on a
newsgroup, the immediate give-and-take does give some useful feedback.

--
Robert
Evelyn Ruut - 27 Mar 2004 13:29 GMT
> I've read these admonitions, and I have been personally urged by many
> acquaintances to join a support group to get some help with my wife who
[quoted text clipped - 5 lines]
>
> go'l.

We belong to a small local support group which is sponsored by the
Alzheimers association in my area.   There are about 6 members (of course
the number varies a little) at each meeting plus the woman who is the
organizer.

We give one another good advice, tips on local resources, tips on dealing
with the loved one who has the illness, and occasionally there is a chance
to vent a little and give or get some sympathy, but it certainly isn't a
pity party and there is a lot of laughter and kindness.

You may think you don't need it, but it is amazing how it turns out that so
often you do.  My husband thought it wasn't anything he wanted to be
involved with, but he has been a valuable member of the group and he
appreciates it as much as anyone else now.

As you may have already realized, there are skills to working with the
person who has this, and there is no reason to deny yourself that little
break, the support of others who are going through the same thing, and the
opportunity to give and get advice, sympathy (if needed) and support.

It has been an opportunity to make local friends and to get another point of
view in dealing with our loved ones.   Don't underestimate the value of
this!
Signature

Evelyn

(To reply to me personally, remove sox)

Mary Gordon - 28 Mar 2004 01:07 GMT
I agree with Evelyn that you can't discount the value of a local
support group. We used to go to one sponsored by the local assisted
living facility, and they often had great speakers (i.e. they'd invite
in local community care coordinators, doctors, researchers, social
workers etc.) I always came away with lots to think about, and feeling
better.

Even though you KNOW intellectually that what you are going through is
not unique, its easy to feel isolated, overwhelmed and like you are
the only one facing some of the often wierd and not so wonderful
challenges of dealing with someone with AD. Being a caregiver is like
being a parent - unless you've been there, its hard to relate. Since
we went through the caregiving cycle so early (all four parents gone
by the time we were in our early 40's), people in our circle just
didn't "get" what we were going through (its not that they weren't
sympathetic - they just had no idea what AD meant in real terms). We
had no one to talk to, or get ideas from among close family and
friends. We're not "group" kind of people, but it WAS great to be
with people in the same shoes as us, and relate some challenge and
have them have the "gosh, you too???" reaction. Its human contact, and
its a source for new viewpoints and ideas - plus we laughed a lot (you
can't help black humour - you're out of tears) and that in itself was
healing.

Mary G.
pitirish - 29 Mar 2004 00:24 GMT
Dear Group,

Thanks to all of you for having taken the time to enlighten me about seeking
local support group assistance. I was completely in error as to how well a
support group might fit my circumstances. I'm going to find one in the local
area and join as soon as possible. As someone wrote, "What's to lose?" Thank
you very much, again. Your interest in the best for others is heartening.

go'l.

> I've read these admonitions, and I have been personally urged by many
> acquaintances to join a support group to get some help with my wife who
[quoted text clipped - 19 lines]
> > well, you *do* need to join a support group, and now.  better to
> > have the info and contacts in advance.
Jo Ann Malina - 28 Mar 2004 10:25 GMT
Songbird <song2871@yahoo.com> is alleged to have said:
> Now my concern is Dad. Three recent incidents:
<snips>

> He is not willing to admit he is having problems, insisting nothing is wrong
> with his memory. True, his memory lapses are not as obvious as Mom's, but
[quoted text clipped - 4 lines]
> complete physical workups on both of them, under cover of "getting
> established with the new doctor." A true diagnosis would help.

If your parents have had a good, close marriage, some of his problem
could be depression.  When my aunt died, my uncle sort of went over the
edge and became mentally "fuzzy."  All he wanted to do was eat, and
talk about the past.  But he didn't have the constant deterioration of
Alzheimer's.  There are various conditions that cause mental problems.
I hope for your sake that there aren't two Alzheimer's patients at once.

> Evelyn, you are right. These early stages really *suck*!! Because their
> money is very limited, I have been trying to keep them there until the house
[quoted text clipped - 5 lines]
> considering the other incidents, I wouldn't count on it. Fortunately, I do
> have POAs already recorded with the clerk of court and ready to go.

Yeah, I left my mother in Florida too long, because we both preferred
living by ourselves.  She had the ocean out her back door, fed the
animals (stray cats and iguanas), and made friends with the neighbors.
Then she couldn't cope with daily life any more, and I moved her to
California to live with me.  I have found myself wishing I'd insisted
sooner, because we could have had more good time together doing things.
But who knew what was coming?  You just have to do the best you can
as things come up I guess.

> And part of me is really angry -- and yes, frightened -- that I have to do
> this *now* -- I am only 43. I expected to face this in my late 50s or early
> 60s -- my parents have longevity genes galore. Someone once told me that the
> day you truly become an adult is the day that you realize that your parents
> will not live forever. I was not ready to be an adult yet!

I think having children jerks you into that reality, too.  Since I
never had any, I've had a sort of extended "young adult" life for over
30 years.  Be glad for your relative youth and strength, you'll need
it. I'm 54 now and physically handicapped.  I could have coped better
10 years ago than now, but would have been much less mentally capable
of accepting my mother's deterioration.  Not that it's easy now, but I
think being sick for some years has already taken the edge off my joie
de vivre anyway...

Good luck to us all.

Signature

Jo Ann Malina, make spamthis best to find my address
Life is what happens to you while you're busy making other plans.
                                -- John Lennon, "Beautiful Boy"

Mare - 29 Mar 2004 03:30 GMT
Hi Songbird,
I was 35 when Mom was first diagnosed and felt the same way you
do. You do have a great grip on things IMHO. Just keep
remembering to breathe and that you can only do what you can do.
Forgive yourself for things that just happen, they probably would
have happened anyway.
Signature

Mare
mfcoleman@THEOLEmindspring.com
http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm
alt.support.alzheimers' FAQs and Stuff Pages

> First -- I am so grateful to have this group here so I can blow off some
> steam among those of you who are further along this awful journey than I am!
[quoted text clipped - 86 lines]
>
> Songbird
KD - 02 Apr 2004 23:28 GMT
Songbird, your post sounds so similiar to my own situation. It's really nice
to talk to people who truly understand what you're going through, isn't it?

I am only 32, just got married six months ago, and just always assumed that
Dad would be there for all of it. He got to walk me down the aisle, but has
always dreamed of being a grandfather. I worry that by the time he get to be
one (before the end of next year we hope!), he'll still be able to enjoy
them.

Dad is only 65. He has always "knew everything about (whether he did or
not)", much like your own father. Three words you rarely heard from Dad
were, "I don't know."   :)  I hear them a little more now, although he's
more likely to make up the answers than he was before.

Like you, I'm angry that this is happening now, and frightened too. Not so
much angry at Dad (although a bit of that I guess), but angry that this is
happening less than two years after he retired, when he should be enjoying
himself. My older brother lives in the southern US (I'm in Atlantic Canada)
and doesn't really seem all that concerned over what's happening. Dad has
always been a person who needs attention focused on him, and my brother
seems to think that this is more of the same thing. He's not here and can't
see what's happening, probably thinks I am overreacting. Not much I can do
about that.

I know that you have it much harder than I do, in that it's both of your
parents you have to worry about. My prayers are with you. I'm so lucky in
that my 68 year old mom is perfectly fine, and she's shocked to hear of
what's happening to my Dad (they've been divorced for over 15 years).

Hang in there Songbird. You will get through, as we all will.

KD

> First -- I am so grateful to have this group here so I can blow off some
> steam among those of you who are further along this awful journey than I am!
[quoted text clipped - 86 lines]
>
> Songbird
Songbird - 03 Apr 2004 03:46 GMT
> Songbird, your post sounds so similiar to my own situation. It's really nice
> to talk to people who truly understand what you're going through, isn't it?

<snip>

My older brother lives in the southern US (I'm in Atlantic Canada)
> and doesn't really seem all that concerned over what's happening. Dad has
> always been a person who needs attention focused on him, and my brother
> seems to think that this is more of the same thing. He's not here and can't
> see what's happening, probably thinks I am overreacting. Not much I can do
> about that.

There's nothing new under the sun, is there? In my case, the brother is
younger, actually lives closer to their current home than I do, and shares
my concerns -- but there it ends. While I was in the midst of agitating over
this last week, I messaged him (we communicate almost exclusively by
computer) to fill him in, and his big pronouncement was that he thinks he
will quit his job in four months and move to West Coast. (We are on U.S.
Eastern Seaboard). If I had any fantasies he could be physical help, they
just disappeared. (Fortunately I knew better.) I have asked him to call
parents on a regular basis to be eyes and ears for me, and he has a medical
background so he's helpful to run my "could it be?" type questions past. But
count on him, no.

Thank heavens for the "family of the heart." My friends here are all
rallying around to help me find resources, offering to help with the actual
move, etc. A nursing student has volunteered to give Mom her monthly B-12
shots when Dad's vision grows too poor (he has incipient cataracts and
macular degeneration). I could do it if I have to, but I'm squeamish with
needles, so I gladly accepted her help. I have tons of volunteers to unload
the truck, hang pictures, wash the dishes, etc. even the Realtor and the
mortgage broker who are helping arrange their new home down here have both
been through this with their own parents and are going the extra mile for
them. And I have you guys when I need to blow off steam!

Thanks for being there!

Songbird
Evelyn Ruut - 03 Apr 2004 12:31 GMT
> > Songbird, your post sounds so similiar to my own situation. It's really
> nice
[quoted text clipped - 37 lines]
>
> Songbird

Dear Songbird,

"The family of the heart"....... Yes, thank goodness for them.

We moved here three years ago and it is just wonderful that we have already
established a small "family of the heart" and they have been just the best!

I received NO help from anyone else when we had to dismantle Ida's home.
One nephew we paid to remove a small dining room set and bring it to another
location.

But the friends who helped were the very best.
Signature

Evelyn

(To reply to me personally, remove sox)

Dennis P. Harris - 03 Apr 2004 06:31 GMT
> Dad has
> always been a person who needs attention focused on him, and my brother
> seems to think that this is more of the same thing. He's not here and can't
> see what's happening, probably thinks I am overreacting. Not much I can do
> about that.

oh, yes there is;  just set up a video camera in the corner and
let it run.  then send the tape to your brother.  that should
wake him up.
 
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