Re: The double-edged sword

[Guest guest]

Ann, I think you have a point with the security thing. But I also don't get

the sense that he is that far along with his disease. Just don't know. This

is a retired military man who got antsy every three years long after his

military retirement, but then, his second career kept him on the move, too.

AND he was in excellent health . . .

I already have the neurologist's support for a move, so suspect that when we

see him in August he will have a few things to say about it directly to Bob.

Cheryl

[Guest guest]

Cheryl,

Some of Bob's discomfort at the idea of moving may be rooted in the security

of routine. LBD patients become so dependent on routine to help them

through the memory gaps. A new residence with things in different places,

new people, all sorts of adjustments--Bob may not verbalize all these fears,

but I'd be willing to bet they're there.

How much encouragement/support can you get from Bob's doctors about a move?

With my sil, although she may gripe and grumble, if we can say, " The doctor

wants you to do this for this reason, " she'll go along, albeit reluctantly.

Ann

[Guest guest]

Cheryl,

At the risk of sounding hard hearted, maybe it's time you put your own needs

ahead of your husband's, or at least on the same level. If you can move

closer to your children and they are willing to provide a support system for

you, please don't give up that dream! Bob may not want to accept it, but it

would probably be better for him, too. I wonder if his fear that he " would

become a burden to them " is more a fear that he will lose you to them? He

could be pleasantly surprised to find that he would have a more cheerful and

healthy wife and also have a good relationship with your children. And, a

blessed thing about most children is that they accept and openly love their

grandparents, no matter what package they come in. My mother-in-law had

Parkinson's (and I really suspect it was LBD, but not diagnosed). Before

our children were born, she had fallen and broken her hip and was confined

to a wheelchair. She could hardly speak, and when she did it was a soft

whisper. I didn't meet her until she was in that condition, so I never was

able to actually have a conversation with her. But, the kids loved her.

I'm worried about you. It sounds like you are in desperate need of a break.

I'm glad your housekeeper is going to be helping. Does Bob remember things

well enough that he stays angry at you? hates to have me leave him,

but he gets over it. Still, the stress of having Bob become agitated and

angry may make it so that you couldn't enjoy your break if you just took it.

Who has the answers? Certainly not me! I really hate this disease. Hang

in there and try to make your dream come true. Bob will be better off if

you are better off. And, if you don't take care of yourself, you could

become ill and he could really lose you. What would happen then? At least

that's what my counselor keeps saying to me. (I pay for such advice. And

you got it for free!)

[Guest guest]

It's been my experience with my sil that although change is disruptive, and

she gets extremely fearful and agitated, she settles into the new routine

pretty quickly. (We've just gone through this this week, moving her from

one wing to another in the nursing home. The first few days were not good,

but now she's settled in and tells me how much better she likes the new

room, the view out the window is much prettier, the wing is quieter, and why

didn't we move her a long time ago.)

Sometimes a fait acompli works when all the discussion in the world doesn't.

Ann

[Guest guest]

Hi, .

Oh, yes, it's my turn!! But he's not sick enough for the POA to kick in and

could make things very difficult if I tried to sell the house. Can't make

him sign, can't make him get in the car. Am thinking about telling him to

enjoy the (miserable) summer here, as the house will go on the market when we

get back in September, regardless. By that time I will have had the

opportunity to find a residence. And for the neurologist to have a

heart-to-heart face-to-face with him, as he supports a move.

Yes, Bob remembers quite well enough to stay angry. He's never been a

mean-spirited person, so I suspect he is trying to cope with insecurities.

He has, after all, lost all that usually draws strangers to treat us with a

modicum of respect, and he doesn't want to be the brunt of stares or jokes or

pity. I really don't blame him for that at all, and while it makes it harder

on me, am glad he has regained the capacity that includes this miserable

piece. He's definitely not yet as sick as some of the LOs on this board.

I'm in kind of a never-never land right now, knowing it's going to worsen.

It's almost like having been jerked back in time, because before the

additional Aricept kicked in it would have been much easier. I can't not

respect his wishes, and when I tell him that if something happens to me he

will go to a nursing home, no question, he seems to ignore the possibility.

You think they understand, and then you wonder . . .

I don't not leave him alone anymore because he fusses - in fact, he would

like for me just to go out. If he continues cognitively as well as he is,

once we have the posture/choking business improved, then I will feel that I

can. For awhile it was falls, then the additional confusion, but they have

abated. The choking scares me, though.

You're right about kids accepting the elders. Mine are his steps and adore

him. Both of the husbands like him - in fact one still thinks he walks on

water. The babies would never have known any different and would just love

him as he is. HE doesn't realize how much pleasure lies ahead for him. It's

like this cat he was adamantly opposed to keeping. Actually her predecessor,

too, come to think of it.

OK, new ammo!! :-)

From things he has said, it is not just insecurity, but feeling like he has

no control over his life. THAT is something I don't think ANY of us want.

Any more than we already have as caregivers, that is. At least we can assume

some future for ourselves - our LOs cannot. It feels just as selfish to me

to insist on moving as it is for him to refuse to cooperate, eventhough we

who are well understand the benefits.

Meanwhile, my girls are on a campaign to call him and let him know how much

he is loved and wanted. I did have to remind them that if he only heard from

me how much they care, it is not the same. Yes, I can MAKE it happen, but so

much better if he is in agreement. That is my hangup.

Cheryl

[Guest guest]

In a message dated 5/10/01 6:53:25 PM Central Daylight Time, lelca@...

writes:

<< helpless because there was no way he was going to stay for anything,

irritated because I was going to have to find another way to do this, feeling

a sense of inertia because it's so difficult to plan on doing anything (even

when you have it worked out, it may not be possible by the time you get ready

to follow through with the plan), worried and stressed because being in

lewyland at home is one thing and being in lewyland elsewhere is another,

angry because my husband was angry with me when I was trying to help. >>

Thank you, Lula. You have really encapsulated a lot of my own feelings.

Never thought about taking the girls with me to see the neurologist, but you

can bet I will talk to them about it. I just hope the one who says, " I know

now that I need Bob in my life " is not too early post-partum to make the two

hour drive. Great idea!! Thanks!

Cheryl

[Guest guest]

Hi Cheryl,

When we went to the therapist and my husband wouldn't stay because all his

visual cues meant to him that he was being admitted to the hospital, I was a lot

of different things: angry with this disease, frustrated because I wanted him to

have the therapy, helpless because there was no way he was going to stay for

anything, irritated because I was going to have to find another way to do this,

feeling a sense of inertia because it's so difficult to plan on doing anything

(even when you have it worked out, it may not be possible by the time you get

ready to follow through with the plan), worried and stressed because being in

lewyland at home is one thing and being in lewyland elsewhere is another, angry

because my husband was angry with me when I was trying to help.

If I were trying to make arrangements to move, as you are, I think I would

follow through with your plans to check on residences. Talk with your kids,

they may have some good ideas with this - and maybe they would come to your

neurologist appt to reinforce what the dr is saying about the changes you both

need to make to manage with this disease. -lula

-- In LBDcaregivers@y..., LewyLady@a... wrote:

> My husband started on 5mg Aricept 3 yrs ago. It worked well for nearly 2.5

> yrs. This past winter the neurologist gradually increased it to 10mg. It

> has fully kicked in and there is an obvious improvement in his cognition.

> He's a better conversationalist, has more sense of humor, and plays with the

> cat he didn't want. His eyes are more alert. He even shows occasional

> initiative. I am pleased, but then again . . .

>

> He is now fully aware that people stare at him due to his posture. Some

> assume he is deaf and shout at him. He has excellent hearing. Many assume

> that because of his posture there is " no one home " and if they speak to him

> at all " talk down " to him. These things didn't seem to bother him until

> recently.

>

> Because of this seemingly newly found emotional discomfort he has made it

> clear that he does not care to go out because of public reaction. He does not

> wish to eat in " knife and fork " establishments because he has trouble getting

> the food into his mouth. (At home he often stands up to eat because it is

> more comfortable for him.) I don't know what we will do on Mother's Day when

> we dine with his mom in her ALF - he was angry with me last month for

> agreeing to have Easter dinner there.

>

> I have talked to him about living closer to my children. He is very clear

> that he doesn't wish to do so " because it would be too much burden for them. "

> He would also have to meet all those new people (don't know who except for

> providers). Telling him the girls and their husbands love him, that they

> want us there, that their children should know us, that I need them, that I

> didn't raise wimps, that I'm lonesome, that if I get sick we would have to

> hire a lot of help, that he is being selfish, etc, etc, falls on deaf ears.

> He is adamant about not going, even telling me that I can go to land and

> he will stay right here. Yes, he knows he can't stay alone and admits it

> when pressed.

>

> I am glad that he is finally verbalizing these things instead of leaving me

> to play a guessing game, but I don't like that he is so aware of being

> something to be stared at that he wants to be a hermit. The irony is the

> wonderful way he told his mother last month that if she chose just to just

> sit in her room at her new ALF her brain would turn to mush. (She is already

> quite happy there!) I've told him he needs to apply that same pep talk to

> himself. When I remind him that he is so much more alert and companionable

> when talking to other people, he just shrugs.

>

> He refuses to have anyone in so I can go out, and refuses to go to day care.

> Now that the additional Aricept has kicked in he is more like he was a year

> ago or more. But when he has those foggy moments they are pretty bad. My

> cleaning lady will come back to us twice a month beginning in June, as she

> did when I was working. Bob is very comfortable with her, so I don't think

> he will feel like she is there to be his " sitter. " She will come at 10AM and

> stay 5 hours so I will at least have that time. It's a start.

>

> As for the posture, he started massage therapy over a month ago. At the end

> of both sessions I could see improvement, but since it takes more sessions to

> change the " memory " in the muscles, it didn't hold. The therapist failed to

> respond to my messages to schedule more sessions until I found her e-mail

> address. She had been too busy. Since I question the professional ethics of

> someone who would take on a client in his condition (chin on chest, choking,

> difficulty eating) and then become " too busy " I found another massage

> therapist who also happens to be an RN. She worked on him yesterday. She is

> very anxious to learn more about LBD and the specific needs of the patient

> with Parkinsonian features, even asking for a phone number to speak with the

> massage therapist that treats Pat Toguchi's father. She is also working to

> get legitimate massage therapy covered by medical insurance.

>

> So I can be hopeful that in another month or so Bob will have a new lease on

> life and perhaps things won't look as bleak to me as they do at the moment.

> Maybe I will drop some of my own increasing irritability. Maybe, just maybe,

> when we go up to land in August for the birth of our second grandchild

> and visits to his doctors he might even reconsider. I plan to look for a

> residence. Well, I can dream, can't I?

>

> Hoping you all are doing alright. Happy Mothers Day to all you mothers.

> Cheryl

[Guest guest]

Cheryl,

I hear you. I still always try to get 's agreement on the big issues.

And he also wants to feel he still has some control of his life. Lately,

he's back to talking about how he wants to drive. I guess I need to set up

for him to take a driving test. He won't pass, and it will devastate him.

I don't know what to do, so I've been doing nothing. Well, actually, I've

been making sure someone always drives him when he goes anywhere. But, he

is starting to resent it.

Some days are just harder than others, aren't they. And, our best days are

never as good as the best days of a year ago. Sometimes he just stares off

into a corner of the room, and I wonder if he's having more hallucinations.

He usually doesn't share with me when he is having hallucinations. The

other night, though, he was picking things off his shirt and I asked him

what was there. He held out his hand as if there were something between his

thumb and forefinger and then asked if I didn't see all the things that were

flying around in the sink. I told him, no, that it must be a hallucination.

today we went to the eye doctor and wanted him to help get rid of the

hallucinations. The eye doctor explained that he couldn't help with

hallucinations, but also said is probably seeing " floaters " , little

spots or such that move around. He said there is nothing we can do to get

rid of them, so it is best if can learn to ignore them. It doesn't

seem fair that has to deal with hallucinations and " floaters " . How

frustrating this must all be for him. And, he still thinks he is doing

pretty close to normal. Told the doctor that he's doing " better than the

average bear " . The doctor took him literally and made some comment about

this having been a bad year for the bears, which left completely lost.

If it weren't so sad, it would be amusing. But I feel more like crying than

laughing.