Just when I think I'm getting better at dealing with all the symptoms (and my husband has had a lot of medical issues, too), he is now showing huge stubbornness about things that are either necessary or helpful. PT prescribed a walker, and hubby just doesn't want to use it, has real trouble with getting in chairs and up to stairs with it. I've tried to modify, encourage, using behavioral modification (MUCH praise and kisses when he does it right) and ignoring when he leaves it behind. But it makes me nervous and frustrated that he continues to resent it and try not to use it. Then, I asked him last night to try to go to the bathroom before dinner, as he keeps having to jump up in the middle of dinner to go-harder now with the walker, of course. Got him TO the bathroom when he ABSOLUTELY refused to even try to sit and pee. Made NO sense to me, I ended up slamming the door and going to eat my own dinner. He came out later, we talked about it quietly, he went to eat his dinner-and had to leap up and pee! ARGH! I know there can be growing resistance and belligerence with this disease, but when it's issues of comfort and safety, I have real trouble. Ended up crying in the basement and calling a friend for support. I never had kids because I didn't think I'd have the patience, and now I seem to have a grown-up Terrible Two-er! I should probably seek help for myself, but then that's another time I have to take him to daycare or get help in. I should probably meditate, but how do I find time for that?? I'm sure some of you have gone through things like this. What do you do to keep your cool, get the LO to cooperate?

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just a thought…..

you are frustrated with a choice you are making against your will…

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with someone who is frustrated with you trying to get him to do things that his brain won't let him do….

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the actions of this disease…..make no 'sense'…
you can't 'make' someone with this disease do anything….in any way that makes 'sense'….

I seem to be on the edge of alot of this stuff….it is scary….for both of us….

the thing that keeps coming to the front for me is that….
the people around the patient…..have the option of choices….
the patient….may appear to have the option of choices…..only an appearance……and only rarely real choices…..

the people around the patient have the real control….
figuring out how to use that control….and to what purpose…..

…..I am just thinking out loud…..
do you want to control the situation?
make things easier for you?
make things easier for the patient?
allow the patient to do anything they want?
make the situation best for everyone?
go to Disneyland?

…..
every moment we all want something different….
but then we all have long term goals….
you are thinking long term…..your world is still growing….
my goals are more short term…..my world is shrinking…..
these are opposing……

I have less and less control…..I have less and less options….
I have less and less abilities…..

you have options…..you have choices….
you have the 'world' that makes sense….
my world doesn't make sense…..

our world doesn't coincide….
it exist parrallel…..
mine doesn't change for you…..
you have to change yours to intersect mine….

……

I do wish you the best in what you are doing…..

Kathy - this disease, does indeed, really try one's patience. My dad was very similar to your husband. Refused to use his walker for quite a while, then would fall as a result of his poor balance and "stuck feet." And the "I don't need to go to the bathroom" but then needing to go a min. later when you're busy with something. It is very, very frustrating. Take a deep breath, and remind yourself that he really can't control himself any more than he could control his body if he had cancer or some other disease. Somehow you will learn to "go with the flow" more because fighting it, trying to control what's happening, or trying to reason with a person with a neurological disease will get you nowhere. He is very lucky to have you caring for him, and there may be a time when you can no longer do this by yourself or at home. Do you have someone coming in regularly to give you a break from the "joys" of caregiving 24/7? You really do need to take care of you and get some time away to refresh yourself. I wish you the best in doing an extremely difficult job. Lynn

FYI, behavior mod doesn't work in Lewy. Lynn is absolutely right: You have to learn to 'go with the flow' whenever possible. Yes, they do fall and we just hope they don't get injured when it happens. When Derek was home, the paramedics and I were on a first-name basis.

Kathy, you've been given good observations, from both sides of the Lewy world.

We've dealt with both of the issues you've mentioned. It's tough.

Coy did not want to use the walker. And who could blame him? He fell with or without the walker and having it tumbling along with him did no one any good. We went to a wheelchair. He accepted that enthusiastically. He felt secure. He wasn't going to fall. He could scoot around the house under his own power. It was a better choice for him. His doctor cautioned about getting enough exercise to keep his legs strong enough for transfers but that was never a problem -- 8 years later he is bowling weekly.

He refuses to go to the bathroom upon suggestion. "I don't have to now" is his repeated answer. We stop at gas stations and fast food places a lot. Mostly I live with it. He gets a massage weekly. He loves it. One of the first times he had to get up, dress, go down the hall, use the bathroom, come back, undress, and finish the massage. He does all of those things very slowly (of course) so that really ate into his massage time. After that it wasn't hard to convince him that he should always go first. I suggested it at the next visit and he said his usual no but the massage therapist was standing right there and she said, Oh Coy, I'd love to use our whole hour for the massage. Remember how much time we lost last week? Trying now would be better." Now our standard routine is for him to use the bathroom while I am signing him in. This hasn't carried over to other situations, but at least once a week we have this habit going.

Maybe you can help change a few things if there is enough perceived benefit in it for your husband and you can help him establish habits. But other things -- most things -- I think it is your patience level you have to work on, not his behaviors. Pick your battles.

I think I've done a fairly good job at caregiving. One of the things I would do differently if I could start over is get some counseling for me. This is a very tough journey we embark on, and getting some guidance on personal feelings and behaviors at the beginning makes sense.

Warm regards to you as you struggle with this.

Thanks for all the input. Yes, cognitively I KNOW he can't control his behaviors, and I KNOW I have to be the adult here, but I keep feeling I can help him before there are bad consequences. Maybe I have to let go of that. Still learning! Yes, I do take him to adult daycare once a week-maybe need to do more-and have a caregiver in when I have evening activities. Seems like he's mostly pretty good for them, naturally! Picking the battles is what I'm working on. So what if the PT said he had to get into the chair one way, when it makes us both crazy and he can't do it by himself? I gotta learn to compromise. Again, I KNOW that, but in the heat of the moment I forget. Walking away from a tense situation may be the best for me-but then of course I worry he will do something unsafe, but there we are back to the same old argument. I'll keep working on it!

My husband's experience with PT and OT was unfruitful because he could not not follow instructions and they would have to keep reinventing the wheel, finally discharging him for lack of progress. In the SNF, he has daily exercises [when he will] with the restorative therapists. These exercises require no assimilation on his part.

Kathy, Just lost the post, I'll try again. Frank resisted EVERYTHING for 2-3 years. I took him to day care 2 days a week for 2 weeks and then he refused to get out of the car so that ended that. I had a caregiver come in 5 hrs a week while I worked at our family business. I spent a lot of time frustrated, then would have a talk with myself and try to deal with issues in a calmer way. As months and weeks went by Lewy robbed more and more so Frank wasn't able to do anything. The frustration changed to a deep saddness watching Frank being robbed of everything, the last thing it took was his ability to swallow. I miss him terribly but wouldn't want him to have had to suffer one more day, it wasn't fair that he had to live like that. Soooo, looking back it was easier to live with the frustration than the saddness. It's a long bumpying road, hang in there and take care of yourself.

Fondly, Gerry

I agree, Pat. OT and PT and Speech Therapy and whatever other therapie they have to offer can have some benefit, but mostly to teach the caregiver what can work. Anything that involves the dementia patient learning something or remembering something is of questionable value. I think that this is especially true when applied at the down points on the rollercoaster, at that is exactly when they are likely to be offered.

Also, many therapists never see the long term outcome and have no good feedback about what works. The PT who ordered the walker for Coy never knew that he did better with a wheelchair. The OT who told me "they don't come back to baseline when they've been in the hospital" did not see Coy 4 months later when he was back to baseline, and so would continue passing that false information on to others.

As beginning caregivers I think we tend to think the "professionals" know what is best and try to apply their methods and advice. It is good to be on discussion forums with other caregivers who have experience and not just theories.

Restorative therapy sounds like it makes a lot more sense. Our daughter is a PTA at an ALF. She exercises individually with each client. She does not try to teach them exercises they are supposed to remember how to do on their own.

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indulge me again for a moment….
I always think I should skip posting….but here goes anyway….
….

again….just my thoughts as I am trying to figure this out from the 'other' end….
listening to all of you is helping to do this…..or at least pass the time…

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I am 56 years old….
I have done things a certain way for a few years….(I realize that I am younger than most of you…but does it matter?)
I am comfortable doing things the way I do them….(actually…I am imprisoned in those ways)
I am losing the ability to do these things….
I can do some parts of things still….I cling to these ways…..'STUBBORNLY' cling to these ways….
if I decide that a way of doing something works for me….I 'STUBBORNLY' cling to that way of doing it….
because….I like success….and as I have less and less of it….I get frustrated when someone insists on robbing me of any…..
IT IS hard to learn new ways of doing things…..especially if it is more than a few steps……
kinda like…..hard for me to remember a short list of 3 or 4 words five minutes later…..(mini mental….)….actually impossible to remember….last time….one word….
same with new tasks…..
same with new excercises…..
same with new anything…..

Jeanne….you said…"anything that involves the dementia patient learning something or remembering something is of questionable value"…..I agree….

now….what do I think….

Help me do what I can do….while I can….the way that I can do it….

……remember just me thinking out loud….

Okay, so what's "restorative therapy"? LO and I do exercises nearly every morning, keeping him in pretty good shape, he can do them with direction. PT was impressed. I'm beginning to agree, tho, that "Experts" don't know all, esp. when they try to prescribe a medication I KNOW is not good for LO. So, depend on what I know works for hubby. Except, of course, that changes. Work with that. Getting it!

Kathy - I can relate about your feeling like you are taking care of a two year old! In many ways this disease makes people revert back to childlike behaviors. I can remember taking my dad to meals in the dining room at the ALF. He'd eat maybe a bite or two, often I'd go to a restaurant and get him a carry out meal of his favorites and bring it back and try to feed him. In his last few months he'd eat very little, then want to get back to his room in a hurry, and when we got there he'd complain that "they forget to take me to the dining room. I haven't been there in 2 or 3 days." I'd ask him if he was hungry and he'd say "yes" so I'd feed him anything he would eat, which was usually packaged cheese crackers, part of an ice cream sandwich, a couple of Hershey miniatures, sometimes fruit. Mostly not very healthy, but calories. I know the poor CGs there felt bad that he thought they had not tried to feed him, and I knew he hadn't skipped any meals because I'd been there for usually 2 meals a day for my visits which were 1 - 2 weeks every month. I would often go out in the hall and just cry, like you in your basement. It was so, so hard. Sending you a giant hug across the "airwaves". Lynn

Restorative therapy is largely an effort to prevent or delay deterioration. In my husband's case it involves a combination of active and passive range of motion exercises performed in his wheelchair.

Kathy:
I, too, am a person with little patience and wouldn't have done well raising children. While taking care of my husband by myself, 24/7, I would often snap at him and then feel bad about it. But the stress and getting up frequently at night was terrible. When at last he went to a memory-care ALF, I was able to be much more loving to him. His life there was better than with me trying to care for him after he had progressed to a certain point. Some of the caregivers on this forum seem to be able to carry it further than I did--should I feel guilty that perhaps I am lacking something? Maybe just a little, but the "out" was there and I took it and would again.

Raising children and caring for an adult who has child-like needs and behaviors is much harder, in my opinion. When I was raising kids, I knew they were kids and couldn't be expected to be "little adults" and I knew they would learn to do whatever it was I was trying to get them to do. When you are dealing with a spouse, parent, friend or whomever the adult is that you are trying to care for, you have known them as an adult and expect them to think and act like an adult. And when they don't, it really throws you for a loop, right?
I remember having this epiphany one day and saying to myself "He USED to be your dad. The roles are reversed, and now you are the parent and he is the child, so get on with it." It was tough to shift gears like that, but thinking it through in a very conscious way helped me get over it and get on with it. It was up to me to take charge and help him in any way I could because there was no one else to do it. And that was everything from taking away the car keys, figuring out how he was going to get places when I was back at my house (500 mi. away), grocery shopping, financial management, lawn care, house maintenance and repairs, finding an ALF and convincing him to move, you name it.
At some point, you will just do it too, and although there always seems to be guilt there, there's less time for guilt when accept that the roles are reversed, or in the case of a spouse, a role you never thought you'd have be in. I wish you all the best. With a spouse it has to be super-difficult in its own special way. Lynn