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Topic Ever changing approaches Go to previous topic Go to next topic Go to higher level

By punky On 2007.11.29 13:50
Hi one and all ... I'm back to posting after a long sabbatical. And over my absence from the forum we've seen tremendous changes in my husband's Parkinsons progression. He was first diagnosed in 1998 and his disease has been very slow progessing. During this past year it's begun to move forward much more dramatically and its required constant, almost daily adjustments to his care. And I've learned a very important lesson that I need to share with other caregivers. As the loving and special caregivers we've been called to be it is very, very hard for us to not to do everything we can to make our loved ones lives easier - easier to move around - to manipulate - to interact with others - and all the myriad other things we do every day. But we must be careful. Don't make the same mistakes I made all these years. I've done much too much for him. I've taken away any desire on his part to "do for himself". He sits and watches tv endlessly and gestures for me to get him what he wants. He's even stopped vocalizing it and tends to just point. He's lost all interest in everything around him. I make and bring all his meals to him in his chair, I fetch and carry and bend and twist whenever he needs something. This has resulted in his total dependence and it's much too soon for that to have happened. There are many, many things he can still do and I've denied him those opportunities. Believe me, he hasn't complained ... he loves being waited on! But it's not in his best interests. His muscles are completely shot and he has absolutely no endurance or stamina. Its been an effort for him to shuffle along for even 50 feet. He's lost the desire or motivation to do for himself. I truly believe his deterioration is of course in part due to the disease but also in part to my lack low expectations of what he should be doing. Soooo - and this is really hard for me ..

I started insisting and demanding things of him. I've cajoled and talked him into pouring his own cereal, making his own sandwiches, emptying the dishwasher, placing his dishes in the dishwasher, answering the phone etc. Sure he can't carry things when he's concentrating on walking and I'm right there to do that for him still. But there are so very many things he can still do. And by making him do what he can, it's changed his apathy and lethargic ways somewhat. He still "ain't no ball of fire" but he's moving a lot more than he has in the past, albeit with difficulty. It takes him forever to do something or even just to cross the room. But, the important thing is he does it! I've told him to take his time .... put some of the groceries away and sit down, empty the dishwasher partially and sit down, come back to "chores" several times., doing a little each time. (And I bet you, too, know it's easier to do it yourself than to watch a loved one pushing his or herself. I keep telling him, You can do it, John. You're going to feel so much better about your self. You still have years of life left in you and you must make them as full as you can.

Today, was the first real sign that he recognizes the good it's doing him. He actually got up out of his chair without prompting, shuffled to the closet and took out a 3-way lightbulb for the lamp next to his chair. He actually took out the old one and screwed in the new one. Sound like a small feat? For him it was a milestone and he smiled like a child at accomplishing what he didn't think he could do.
We had a few good laughs and some clapping over that ... a mini-celebration!

God bless every caregiver and every Parkinson's patient. My husband's disease has taught me more than I can say and I wish the same for each and every one of you.

By LouAnn On 2007.11.29 18:50
Dear Punky, Congratulations, cheers, encore! Lou Ann

By annwood On 2007.11.29 18:56
Punky - good for you. We caretakers do tend to enable our charges. My husband was always very independent so now that he is in the final stage of PD he is very angry tht I am doing things for him. Do not blame yourself - we all are learning by the seat of our pants and doing the best we can. Enjoy some free time!

By packerman On 2007.12.03 16:47
you are so right. we are unintentional enablers. and it's not healthy for them or for us. I applaud your new attitude. it's hard, but I am trying to do the same.

Tom says he wills himself to continue to do things for himself out of sheer stubborn-ness. it boosts his self-respect. he will ask me for help only when he's tried already.

congrats to hubby for his "stick-to-it-iveness"!


By Pick On 2007.12.05 19:53
We have an enormous problem with this at our house. My dad has given up doing many things for himself. And often he doesn't want anyone, like a caregiver, to help him but me. He also frequently gestures and grunts for what he wants instead of vocalizing. This seems so rude to me and really hurts my feelings. He raised me to always always always say 'please' and 'thank you'. How did this happen?

Yes, I do enable him because in many ways its easier to just do it myself....especially when any suggestion that HE, for example, could perhaps put that dirty Depends in the trash himself is met with such utter hostility and accusations of abandonment. But this is also part of our ongoing struggle with PD psychosis. Anyway, punky, good for you!

By punky On 2007.12.06 09:16
Good morning Pick .I'm afraid we create this monster ourselves by doing so much. I used to think the hardest thing ever was to see him struggle with something. Now the hardest thing to see is him not even trying. He became more and more stagnant, both in mind and body. I'm a doer by nature and it sure is quicker and easier to do things myself.

Insisting that he do what he's able has caused many an argument and battle. The look on his face used to be one of sorrow, frustration, anger, abandonment and pity. He was playing the part to the hilt ... why me? poor me? look what you're making me do? can't you see how hard this is? It riddled me with guilt and made me feel like Nurse Ratchet! It nearly destroyed me. Now he's actually feeling better about himself - has more confidence - is at least moving about a little - and has come back to being a participant in our lives again -- albeit like a child. The change was slow but no question it's working. I wish it for every patient and caregiver.

John and I both realize the time is coming when it will be impossible for him to do these things. But that just makes this time more important and precious. We need to take what we can get and stay as far ahead of this damn disease as we can. Good luck!

By Pick On 2007.12.07 10:27
Thank you, Punky. I commend you for your stick-to-it-iveness. I hadn't picked up on your husband's initial resistance in your first post. Knowing that you two have made strides, in spite of his opposition and through many battles, gives me hope that maybe it's not too late for me and my dad.

I try to negotiate but he still acts like I'm Nurse Ratchet. Last night I gave my dad a choice: either get ready for bed at a reasonable hour (i.e. 11 PM) with my assistance or stay up but you're on your own....I'm going to bed. Guess what he chose? As a result the sheets, quilt, bed clothes, everything are soaked (because he didn't put on diapers or use chucks, etc.) and of course this is *my* fault. I'm operating on about 3 hours sleep right now (2 falls last night, 2 visits from police for lift assists) and he's screaming at me to give him his shower. I told him I'll give him his shower after he puts his soiled linens in the washing machine.

Why should I exhaust myself to help someone who won't lift a finger to help himself? It's not like he's completely immobilized....yesterday friends drove him to Boston and back (over 6 hrs. round trip) for an annual lunch. The day before he went to a basketball game. Yet somehow laundry eludes him.....

By Barb Gates On 2007.12.28 13:22
Oh my gosh, usually I don't have the patience to read a post as long as yours, but did you ever hit the nail on the head. My husband was diagnosised with Parkinson's 4 years ago, he is 94 years old. He was always very active, but now when I'm home he sits in his chair and expects me to be his servant. We have a 29 year difference in our ages and I am still employed, I wonder how he manages when I'm not there and I am only not there when I am working, otherwise I just take him with me to run errands and visit our older daughter. I have heard from out daughters for at least 25 years well you can't expect him to do such and so because of his age. I am now at that age and I still need to be responsible. I support us, do all the cleaning, cooking, paperwork, setup appointments, etc. I have told him he needs to move around more, it's a matter of survival. I leave him the dishwasher to empty, although the dishes are only taken out and put on the table. He is expected to empty the kitchen trash, sweep up leaves when he is able, dress and shower hisself. Sorry, if it sounds mean but the point is I want him to survive a little longer. The best part is that he never gets beligerent, he keeps a good attitude. I certainly agree with you he needs to do as much as possible for hisself.

By kuttlewis On 2007.12.28 19:59
Thank you, punky, for posting this. I've been forcing John to walk even if he says he's immobile. Now he tells everybody that only I can make him walk, as if it were a special trick. It's not. It's just patience and constant reminders like: put down your heels, don't think about the chair or bed, back off and stand straight. I feel if he does not do this every three hours, he will lose his mobility.

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