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

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Family not responding?

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Feather Forestwalker - 22 Dec 2004 17:51 GMT
Have any caregivers on this list found that when you contact family
members regarding holiday time with their loved one who has Alzheimer's,
that they do not respond to your calls?

I spoke with a friend of my client the other day and she said, "It won't
matter to **client's name** anyway, if she doesn't spend Christmas with
her family; she won't remember it anyway."

Well, my client has been regularly asking for friends and family, but
has, interestingly enough, despite being surrounded with holiday
festivities at the day program and at my place as well as on her own
television, not mentioned Christmas.

When I asked her about it, she said, "Ah, no, I don't need that stuff."

OK, but what about her family? Won't they be interested in spending part
of Christmas with her?

Two of her friends have come forward and offered time on Christmas Eve
and Christmas day. I have yet to hear from the family on this; will they
or won't they come up and see her, maybe take her home with them for
Christmas?

Her other friend said that last year, she stayed home and friends
stopped in periodically throughout the day to visit. Oh, OK.

I guess it bothers me more than her, eh?

*sigh*

Christmas the Alzheimer's way?

I just don't get it,

Thanks for letting me rant,

Feather
Tumbleweed - 22 Dec 2004 19:19 GMT
> Have any caregivers on this list found that when you contact family
> members regarding holiday time with their loved one who has Alzheimer's,
[quoted text clipped - 13 lines]
> OK, but what about her family? Won't they be interested in spending part
> of Christmas with her?

Well maybe, or maybe not. Maybe its better to spend Xmas with someone to
whom it means something and go spend time with them later. maybe they find
it too stressful to be reminded of the condition their LO is in. maybe they
dont care. Unless you ask, you wont know, but its unlikely they'll say 'oh
jimminy I never thought of it', I suspect they have decided what to do
already and perhaps dont appreciate someone loading some guilt on them? (you
may not see it that way, but they may perceive it that way. Or maybe its
just too painful and they feel guilty about saying that.) Either way its not
your job to bug them about it.

> Two of her friends have come forward and offered time on Christmas Eve and
> Christmas day. I have yet to hear from the family on this; will they or
> won't they come up and see her, maybe take her home with them for
> Christmas?

Not necessarily a good idea, might confuse the heck out of her. maybe she
wont even want to leave, or will be continually asking to go home all the
time? OR maybe it will bea  long and disruptive journey for them, to spend
an hour with someone who doesnt care about xmas anyway..why not see them
later in that case?

> Her other friend said that last year, she stayed home and friends stopped
> in periodically throughout the day to visit. Oh, OK.
>
> I guess it bothers me more than her, eh?

Yes.

> *sigh*
>
> Christmas the Alzheimer's way?
>
> I just don't get it,

Not everyone sees things the same way. I'm sure many wont be spending Xmas
with their LOs, and OTOH many will go a long way out of their way to see
them. Different circumstances, different people, different strokes.......

> Thanks for letting me rant,
>
> Feather

Signature

Tumbleweed

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

Feather Forestwalker - 22 Dec 2004 20:59 GMT
>>Have any caregivers on this list found that when you contact family
>>members regarding holiday time with their loved one who has Alzheimer's,
[quoted text clipped - 23 lines]
> just too painful and they feel guilty about saying that.) Either way its not
> your job to bug them about it.

I was reading last night in a caregiver's handbook called Alzheimer's
FAQ, that when loved one's don't take some responsibility in visiting
their sick relative(s), that when those sick relatives die, they carry
the guilt of *not* having done something with that relative, the rest of
their lives.

Even a SMALL, SHORT visit, is better than none, according to this book.

Of course, since Christmas never seemed to matter that much to my
client, I suppose in some cases she is more well-adjusted about it than
are many folks, myself included. Of course, *I* won't be spending
Christmas with any of my family other than my son and our church family
serving Christmas dinners. . .which for us has been a tradition for
going on six years.

>>Two of her friends have come forward and offered time on Christmas Eve and
>>Christmas day. I have yet to hear from the family on this; will they or
[quoted text clipped - 6 lines]
> an hour with someone who doesnt care about xmas anyway..why not see them
> later in that case?

Well, it will probably be better for her with less people; more
one-on-one seems best for her temperament, anyway, and she's always been
a rather independent type. One friend one day, another friend another
day; that seems to last in her memory better, too.

>>Her other friend said that last year, she stayed home and friends stopped
>>in periodically throughout the day to visit. Oh, OK.
>>
>>I guess it bothers me more than her, eh?
>
> Yes.

*LOL* Yeah.

>>*sigh*
>>
[quoted text clipped - 5 lines]
> with their LOs, and OTOH many will go a long way out of their way to see
> them. Different circumstances, different people, different strokes.......

I was just thinking about ways for the family to circumvent the guilt
that *will* come later, *without* laying a guilt trip on them. I have
called twice in the last two weeks, (compared to regular calls early in
my work with her, asking about her preferences, personality, etc) -
asking if the family had plans for their relative on Christmas, with no
answers. I am not pushing it.

Thanks again,

Feather
Tumbleweed - 22 Dec 2004 22:05 GMT
>>>Have any caregivers on this list found that when you contact family
>>>members regarding holiday time with their loved one who has Alzheimer's,
[quoted text clipped - 29 lines]
> of *not* having done something with that relative, the rest of their
> lives.

Taking "some responsibility" is a long way from not visiting on one
particular day of the year.
And the book may be wrong of course, I have heard of one or two that were
:-)  But I'm guessing you are extrapolating from 'taking no responsibility
at all at any time ' to 'choosing not to visit on dec 25th'. Am I right or
am i right?

Even so, I'd hazard a guess that for some people, taking no responsibility
feels fine for them and they suffer no guilt at all, indeed maybe they are
even relieved. Some people are like that. This may even apply to some of my
relatives. Seems like a foolish book if its going to pretend everyone is the
same regarding feelings.  Think Ruanda, Cambodia or Dachau and then tell me
that *everyone* who doesnt look after a sick relative (or not visit them on
a particular pagan festival day) is going to suffer guilt.

> Even a SMALL, SHORT visit, is better than none, according to this book.

What, does it specifically state that *whatever the circumstances of the
visited/visitee*, a short small visit *on christmas day* is better than none
at all? Somehow, I find it hard to believe tahts in the book. But if it
really does say that , such a generalisation cannot be true. It may be true
in some cases for some people, but a blanket statement like that is
incorrect, or to use a technical phrase  'complete hogwash'.

Tw
Songbird - 23 Dec 2004 03:45 GMT
Or maybe the family is like mine -- we never got together for Christmas. It
was a workday for my dad, a minister. This will be first Christmas in 24
years I will be with my parents -- by mutual choice. And the reason we will
be together this year is precipitated by Mom's dementia.

Songbird

>>>>Have any caregivers on this list found that when you contact family
>>>>members regarding holiday time with their loved one who has Alzheimer's,
[quoted text clipped - 55 lines]
>
> Tw
Evelyn Ruut - 23 Dec 2004 13:38 GMT
>>>>Have any caregivers on this list found that when you contact family
>>>>members regarding holiday time with their loved one who has Alzheimer's,
[quoted text clipped - 55 lines]
>
> Tw

yes.  i would say that our first responsibility as caregivers is to
ourselves, since if we fall apart, we cannot take care of anyone else.

since my injury, i freely and honestly admit that we are sorely neglecting
visits to Ida in the nursing home and although it is regrettable, neither
one of us feels guilty.   we are doing the best we can.  my poor husband is
doing full time nursing care with me, taking care of me, the house, just
everything.    i am in a lot of pain even still, running to the doctor, the
phys therapist, trying to keep the bills paid and our sanity intact.   i
have the second surgery scheduled for the third of jan.

so, i am not really having any holiday to speak of myself.  when i get the
hardware out of my shoulder in another week and a half, if the pain has
begun to subside even a little, we will go and make it up the best we can.

our own sanity, our own lives and concerns must come first.   ida is in a
place where she is getting skilled nursing care round the clock.  at least i
don't have to have that additional concern at this time.   she is clean,
fed, medicated and looked after by professionals.    wish i could say the
same for myself....at least till i get well again.   this has been really
rough.

no guilt around here......we are all just doing the best we can.
Signature

Regards,
Evelyn

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

donnah - 23 Dec 2004 14:10 GMT
(((Evelyn)))
donnah

>>>>>Have any caregivers on this list found that when you contact
>>>>>family members regarding holiday time with their loved one who
[quoted text clipped - 87 lines]
>
> no guilt around here......we are all just doing the best we can.
Evelyn Ruut - 23 Dec 2004 15:03 GMT
> (((Evelyn)))
> donnah

thanks donnah,

i just wanted to add something to what i wrote previously, and this seems as
good a place as any to do that.

people build their relationships with their families.   no one can really
judge them.   it is a relationship they have constructed themselves over the
years.

i don't for a minute doubt that there are plenty of good people in nursing
homes and such, who get the short end of the stick from their families, but
it needs to be viewed with some greater understanding than just some
knee-jerk pity for the 'poor' neglected patient.

there are families where relationships have been outright toxic or maybe
just plain selfish over many years.   who can say these individuals are not
reaping the harvest they sowed?  it isn't for another to judge.

getting an illness like alzheimers does not automatically cancel the past.
in my case it was an exception that we were able to overcome past
negativity, but there were no sibling rivalry issues to deal with, and also
i was always open to making peace.   not everyone is, and there is no rule
that says they must.

if there are people who get no loving familial recognition at holiday time,
we need to realize that there are two sides to a relationship.   everyone,
caregiver included, deserves consideration and loving recognition, but we
also have to take care of our own needs first.

if we build loving relationships with our families that don't foster a lot
of jealousies, rivalries, selfishness, or it's close cousin overindulgence,
without teaching responsibility toward others, that is the best we can do
and the most we can hope for so our children will WANT to see us and nurture
a relationship if we become chronically ill somewhere down the road.

if a formerly loving relative gets a brain disease that makes them
exceedingly unpleasant to deal with, there is only just so far we can go
till our efforts become destructive to the peace of  our own lives.   no one
should judge them if they choose to opt out of having every holiday
destroyed out of misplaced guilt.

if that is the case, visit the day after or the day before.   we are all
just doing the best we can.   self immolation is good for nobody.     guilt
is a crippler and the enemy of open hearted love, and of good memories down
the road, so give it no space in your head!

happy holidays to all of you and yours!
Signature

Regards,
Evelyn

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

>
>>>>>>Have any caregivers on this list found that when you contact family
[quoted text clipped - 85 lines]
>>
>> no guilt around here......we are all just doing the best we can.
donnah - 23 Dec 2004 16:11 GMT
These wise words are a keeper, Evelyn...thank you!
donnah

>> (((Evelyn)))
>> donnah
[quoted text clipped - 144 lines]
>>>
>>> no guilt around here......we are all just doing the best we can.
Mary_Gordon@tvo.org - 23 Dec 2004 16:58 GMT
Wise words, Evelyn.

As you know, I answer Alzheimer's questions for Allexperts. I get
questions frequently from people whose struggle as a caregiver is made
more painful because prior to Alzheimer's, the person involved was not
exactly beloved. They ask me all the time how they can summon the
maturity and strength to totally forgive and forget and put all the
hurt behind them. Its hard enough to shoulder the burden when your
sense of duty is reinforced by positive memories of a person you not
only cared for, but feel you owe a moral duty to for all the positives
they brought to your life. Its  that much more challenging when the
person was a misery or worse (someone so toxic that while they were
well their blood relations fled from contact in self preservation).

Many people who I think did really care for my mother in law could not
handle her decline - probably a combination of grief, and fear, and
thus they stayed away. If she could not respond in ways they were
comfortable, they didn't know what to do and thus ran from contact. A
surprising number of people really can't face illness and mortality.
Mary G.
Evelyn Ruut - 23 Dec 2004 18:28 GMT
> Wise words, Evelyn.
>
[quoted text clipped - 16 lines]
> surprising number of people really can't face illness and mortality.
> Mary G.

that is absolutely true, mary.

my mother in law had a couple of really near life-long girlfriends.   one
died before ida came to live with us but the other has never once been to
visit.  we played telephone games a lot where she would promise to come but
somehow found excuse after excuse.   i don't believe she could deal with it.
i know she cared, just couldn't handle seeing her incontinent and asking the
same questions over and over, talking foolishness.   i still feel a bit sad
that she couldn't manage even one visit, though we offered every possible
way to make it possible.    i have not found it necessary to blame her or be
angry about it.   she just couldn't handle it.   like you said, some just
can't.  it is fear of our own mortality, and something we all have to work
with.

Signature

Regards,
Evelyn

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

Gwen Love - 23 Dec 2004 16:52 GMT
no guilt around here......we are all just doing the best we can.
Signature

Regards,
Evelyn

Evelyn, that is what I have preached ever since I started posting on this
NG.  You do the best you can with what you have and what you know at the
itme, and never, ever feel guilty for not doing more.  That was my motto and
it served us well.
Gwen

Evelyn Ruut - 23 Dec 2004 18:34 GMT
> no guilt around here......we are all just doing the best we can.

yes, exactly gwen.  i think everybody on this newsgroup is doing the best
they can......   we are the ones who already have stepped up to the plate
and done our bit.

there is always going to be a limit to how much you can do and recognizing
that limit is good common sense.
Signature

Regards,
Evelyn

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

Feather Forestwalker - 25 Dec 2004 07:02 GMT
> no guilt around here......we are all just doing the best we can.

Agreed. And I am sorry if it sounded like I was laying a guilt trip.

Feather
Evelyn Ruut - 25 Dec 2004 11:39 GMT
>> no guilt around here......we are all just doing the best we can.
>
> Agreed. And I am sorry if it sounded like I was laying a guilt trip.
>
> Feather

dear feather,

oh no!   i didn't think you were trying to lay on a guilt trip, i spoke up
because i know how easy it is for us caregivers and family members to take
one on ourselves.   i have seen it so many times and even done it myself!

have a wonderful holiday!
Signature

Regards,
Evelyn

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

Howard Goldstein - 23 Dec 2004 22:42 GMT
:  Her other friend said that last year, she stayed home and friends
:  stopped in periodically throughout the day to visit. Oh, OK.
:
:  I guess it bothers me more than her, eh?
:
:  *sigh*
:
:  Christmas the Alzheimer's way?
:
:  I just don't get it,

"You don't know a person until you've walked a mile in their moccasins"

(If you've walked the mile with a member of your own family then
please insert the <Emily Litella>Nevermind!</Emily Litella> markup around
the quote)

:  Thanks for letting me rant,

It's cool. Despite the quote above, it really is.  _This is_ the place
to rant.

Some of us wearing the mocassins may need to hear the server's side,
too, and more than that, to appreciate the caring and emotional
attachment of non-family to our loved ones, especially during the
holidays.
Tumbleweed - 23 Dec 2004 22:45 GMT
> :  Her other friend said that last year, she stayed home and friends
> :  stopped in periodically throughout the day to visit. Oh, OK.
[quoted text clipped - 12 lines]
> please insert the <Emily Litella>Nevermind!</Emily Litella> markup around
> the quote)

I thought it was 'before you insult someone, you should walk a mile in their
shoes. That way, you have a head start of a mile, plus you have their shoes"

Merry Christmas to all
Signature

Tumbleweed

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

Howard Goldstein - 23 Dec 2004 23:47 GMT
:
:  "Howard Goldstein" <hgoldste@mpcs.com> wrote in message
:  news:1103841771.73249@news.queue.to...
: > On Wed, 22 Dec 2004 17:51:14 GMT, Feather Forestwalker
: > <feather@NOSPAM.net> wrote:
: > :  Her other friend said that last year, she stayed home and friends
: > :  stopped in periodically throughout the day to visit. Oh, OK.
: > :
: > :  I guess it bothers me more than her, eh?
: > :
: > :  *sigh*
: > :
: > :  Christmas the Alzheimer's way?
: > :
: > :  I just don't get it,
: >
: > "You don't know a person until you've walked a mile in their moccasins"
: >
: > (If you've walked the mile with a member of your own family then
: > please insert the <Emily Litella>Nevermind!</Emily Litella> markup around
: > the quote)
: >
:
:
:  I thought it was 'before you insult someone, you should walk a mile in their
:  shoes. That way, you have a head start of a mile, plus you have their shoes"

Hahahaha!  Never heard that one

:
:  Merry Christmas to all

Merry Christmas Tumbleweed!
donnah - 24 Dec 2004 14:49 GMT
Just a thought I would like to share..

" O Great Spirit whose voice I hear in the winds, I come to you as one
of your many children.I need your strength and wisdom.
Make me strong not to be superior to my brother but to be able to
fight my greatest enemy...myself."
Chief Dan George

This just reminds me that, indeed, I cannot judge the actions or
intentions of others when I do not know the path they are walking...
donnah

> :  Her other friend said that last year, she stayed home and friends
> :  stopped in periodically throughout the day to visit. Oh, OK.
[quoted text clipped - 25 lines]
> attachment of non-family to our loved ones, especially during the
> holidays.
donnah - 25 Dec 2004 14:03 GMT
please let me add a postscript to this...I did not mean to sound...???
I can't even think of what word to use!
This week has been once again a learning experience for me. Tuesday I
took Mum to lunch, then she wanted to go to K-Mart for a new coffee
pot...
No problems doing that as she seemed to be enjoying herself--except I
could feel myself getting sick with a cold/flu bug. All I wanted to do
was get home and go to bed. And, of course, Mum was having such a good
time looking around that I hated to tell her I needed to get home. But
I did tell her, and we left after standing in line for what seemed
like hours (probably only 15-20 minutes!).
When we got home, Dad had fallen once again. Fortunately, he was not
hurt as far as I could tell...he wanted some time alone so there was
no one there. When he nicely asked what she had bought, Mum went into
a tirade about spending her money as she wanted, cursed, and told him
he ruined her day out. I was caught by surprise and saddened by the
look on Dad's face.
Wednesday and Thursday I was too sick to go down so Nick did--and she
chased him off telling him she could manage on her own. He really did
want to help out and see Dad, too.
Yesterday we went down and fixed lunch and Nick was going to help me
do up whatever laundry there was...Mum had done it. She can barely get
around the house because of her legs, my SIL was there Wednesday to
"help" bake a cake, and she really should not have been going outside
to the laundry room. She can't use her walker on the concrete...heck,
she can barely use it on a smooth floor.
My reaction was anger then frustration then I realized that, in her
own way, she was probably trying to help and to feel independent. But
initially all I saw was the danger she put herself in, and I was also
angry at the way she acted with Dad. Darn, I hate finding out that I
am not Mother Teresa, that I am human, that I still have normal
reactions to some events...that this is a journey and not a
destination where I'll achieve sainthood for being so good! <said with
a smile>

We had to cancel our plans for Christmas get-togethers--I was just too
sick to do it. Nick understood and we have shared in our
disappointment and encouraged each other...and I am grateful for this.
I'm sorry this is so long! It's been a tough week, and I just needed
to share.
donnah

> Just a thought I would like to share..
>
[quoted text clipped - 39 lines]
>> attachment of non-family to our loved ones, especially during the
>> holidays.
Gwen Love - 25 Dec 2004 19:43 GMT
Donnah, I am so sorry you are sick and can't really enjoy Christmas.  You
can still remembr the reason for it though, and I know you do.  God bless!
Gwen

> please let me add a postscript to this...I did not mean to sound...???
> I can't even think of what word to use!
[quoted text clipped - 81 lines]
> >> attachment of non-family to our loved ones, especially during the
> >> holidays.
Evelyn Ruut - 26 Dec 2004 11:37 GMT
dear donnah,

i truly hope you are feeling better.   (my daughter has a nasty cold too).

i have had to just totally write off this holiday season's festivities this
year too.    about all i can do is hang around the house in a flannel
nightie and hold an ice bag on my shoulder.   there will be better times
coming.   we just have to believe that and get from one day to the next till
those better times come along.

hugs to all...........
Signature

Regards,
Evelyn

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

> please let me add a postscript to this...I did not mean to sound...??? I
> can't even think of what word to use!
[quoted text clipped - 74 lines]
>>> attachment of non-family to our loved ones, especially during the
>>> holidays.
donnah - 26 Dec 2004 12:12 GMT
(((Evelyn)))
thank you...I feel almost human (I just don't look it :)
I so wish you felt better, too! and very soon...

Ah, the flannel nightie is my favorite dressing for when I feel bad.
It has seen better days, for sure! It's raggedy and comfy and I love
it.

Evelyn, I guess I've lived long enough to know that better times are
ahead, but I'm lacking in the patience department <g>
donnah

> dear donnah,
>
[quoted text clipped - 95 lines]
>>>> attachment of non-family to our loved ones, especially during the
>>>> holidays.
Evelyn Ruut - 26 Dec 2004 12:27 GMT
> (((Evelyn)))
> thank you...I feel almost human (I just don't look it :)
[quoted text clipped - 6 lines]
> ahead, but I'm lacking in the patience department <g>
> donnah

dear donnah,

you may remember i am a buddhist, and there are some techniques which are
very helpful.   i have no patience either, but what has been very helpful to
me is to keep in mind that all i have to do is to get through the present
moment, just now.    it really helps.

if i think about how long it will be till my shoulder is fully healed and i
am "normal" again, i will go bonkers.   instead i just think about getting
through the next few minutes, the next hour, just this day.    i promised
myself to maintain that view throughout this whole ordeal, and amazingly the
time is passing.    on the third of january i will get these metal rods out
of my arm!   that is only a week away!

Signature

Regards,
Evelyn

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

 
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