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Topic Helping my PDer Go to previous topic Go to next topic Go to higher level

By LC On 2010.12.08 13:42
My daughter has been giving me a lot of grief later about helping my husband with simple tasks such as putting on his coat or buttoning his cuffs. She feels that I am doing more for him than is necessary. He is in the early stages of PD and his fine motor skills are affected. Am I doing him harm by helping? Should I encourage him to try to do these simple tasks himself?

By TiredTexan On 2010.12.08 14:37
I "promised" my PD spouse that I would only do for him what he could not do for himself. And it seems that little things are the ones he needs help with most - like putting on his jacket, or buttoning his left sleeve cuff (those buttons are SO small). With his dementia I do have to keep his meds organized - and we have made a weekly chart on which he checks off those as he takes them. And of course, I have to jog his memory. We are blessed that he has no tremors and walks just fine for an 82 year old man! Most of the time it takes him longer to do routine things, and that requires much patience on my part! But being as independent as possible seems important!

By LOHENGR1N On 2010.12.08 15:40
LC, You caregivers/partners have a very rough job. At times I'm sure it only makes sense to step in and complete a task or help in completing one. However one must consider the whole relationship and it's dynamics. TiredTexan stated that She promised only to do things Her spouse couldn't do for himself any more. A very wise "promise". Also being independent for as long as possible as TT said is important. Science breaks down interpersonal relationships in three main parts, independence, interdependence and dependence. As these relationships function they slip in and out of these categories. Or we do things alone, with each other or for each other. When illness strikes these lines and categories become blurred. With a debilitating disease like Parkinson's over time independence lessens and interdependence (will you help me or I'll help you with that) relying on others to help and dependence relying on others to do it become more of the norm than exception. It is important to encourage independence as much and long as possible. There are many tips others here can give you on buttons being replaced by velcro fasteners etc. to help maintain some levels of independence. Of course if it's dangerous or the patient can be harmed by attempting something step in and help or do it for them.

Over the years talking to caregivers and spouses it is hard to watch someone you love struggle with things. But to step in too soon or take over doing what they could do (albeit it takes Us longer) erodes independence and what is left is relying on help with everything or having everything done for the patient. Maybe you don't realize being so close to the problem you have tendencies to help too much. Maybe your Daughter can see this where you through your love can't? Or maybe your Daughter sees Dad slipping away a little and transfers the progression of the disease to you're helping him too much and that's why he's having trouble? I don't know, just guessing here. I'm sure other Caregivers here will be of more help to you than I can in this.

Independence as safely as possible, for as long as possible is as important as exercise fighting this disease. And I'm sure other caregivers/partners with their Solomon like wisdom they display daily will gladly help you in this. Take care, best of luck and hang in there.

By Emma On 2010.12.08 17:37
LC, it's a fine line isn't it? Knowing what to do and when to do it is tough.We have gradually made changes over the years to allow my husband to continue to be as independent as possible. For instance, we went from regular zippered pants to pants with a velcro fly to pull on elastic waist pants with no fly. We switched from button shirts to pull on. Shoes with velcro or keep sneakers tied half way down so he can slide his foot in. Electric razor instead of blades. We've bought adaptive equipment like bed rails and a lift chair to help him do things more independently.

It seems to me that people tend to fall into two camps; those who want to be independent even when it gets to the point that they can't, and those who are perfectly happy to have someone else do everything for them. My husband falls into the latter category so I always found myself having to take a stand and encourage him to do things himself, even though I did have some sense of wanting to baby and pamper him (which I'm guessing is what's happening with you). But for his own sense of self and to prevent me from becoming his personal servant I had to not help him if I knew he could do it. I do think that in general it is better to encourage independence and offer help when it is truly needed for safety (which is where we are now) or to head off the extreme frustration and depression that the PWP experiences when they try repeatedly to do something that they just can no longer do (no point in setting someone up for failure). I have also found that there is a difference between at home and in public. Back when my husband was able to do more than he can now he would get very embarrassed in public if he had to struggle with something, like his coat, in front of other people. In that situation, because it bothered him, I would try to discreetly offer assistance because I felt that his sense of dignity in public outweighed the ideal of him doing things himself.

There will probably come a time when you won't have a choice and will have to do many many things for your husband. Right now you can both enjoy the independence that he does have.

By mylove On 2010.12.08 19:46
I know I posted about this in a long ago post, but to Emma and others: if your spouse loves his button up shirts vs the more casual pull on styles, there's a way around that too. Leave all the buttons done up except the top couple. Then it can be pulled over the head the same as a pull on, and there are much fewer buttons to be done up. If your guy wears an undershirt beneath his button up, he can even leave the top one unbuttoned and not even worry about it. The cuffs are another matter, but still - it's an improvement and lets them still look nice.

By parkinit On 2010.12.08 23:40
I, personally, struggle with this issue as well, so again, thank you for bringing this topic up that is an issue for many of us. My husband CAN do things with MUCH difficulty for himself and given the choice, he would have me help him. Do I let him struggle even though he doesn't seem to want this independence (and be his "personal servant" as aptly written, above) or do I assist? it is a fine line and one I frequently struggle with myself. Sometimes, I remove myself from the room when it is time to get ready to go somewhere, and amazingly, he is able to get dressed himself. He does struggle, though, because not only does he have PD, but two bad shoulders (he has two bad rotator cuffs), so I do feel guilty for letting him struggle with this and sometimes i just give in to my guilt (more often that not), and help him. Then I'm mad at myself because I think that forcing himself to move his shoulders around will keep them as flexible as possible.

It IS a tough issue.

By Emma On 2010.12.09 03:20
mylove, what a great tip about the shirts, that's one of the things I love about this board, so many good ideas to share. We are at the point now where I do have to dress my husband and that is due partly to the Parkinson's, but mostly to his dementia. He is just totally perplexed and frustrated by his clothing. At this point I feel like making him dress himself would be akin to making him balance the checkbook. Nevertheless I think that the shirt idea will help a lot of people so thank you for that!

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