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Topic New to the Board and to Caregiving, Seeking Feedback Go to previous topic Go to next topic Go to higher level

By RATsLinda On 2012.05.02 00:10
Hi Everyone,

Thank you so much for making this forum available! I've worked in non-medical direct care in a residential, vocational rehab field for 13 years, mainly with youth. I recently resigned to pursue other avenues of interest in the therapeutic music arena, but that's taking a lot longer than I anticipated to generate a "regular" income.

Meanwhile, I was blessed with an opportunity to provide p/t non-medical companionship for a former co-worker's aging family member who has PD. (4 hours each day M-F) His wife wants someone who can provide inspiration and company and help inspire him to exercise and stay active.

As soon as I met them, it felt like I was meant to be there. I want to do all I can to ensure he gets the quality of care and attention that he deserves and she gets the support she needs. I'm hoping for some helpful hints and words of wisdom that can help us with this transition in care and help me feel more confident in meeting their needs.

His current caregiver has to resign and I'll be replacing her. He was diagnosed with PD several years ago and an auto accident, about a year and a half ago, prompted more symptoms to present. He needs a little help with showering and dressing due to limited use of his dominant hand and limited range of motion. He used to be a very active sportsman, master wood crafstman, and computer repair specialist.

He's able to communicate and express emotions fairly well, but often can't remember what he wanted to say or he'll freeze mid-sentence. He's usually able to continue with either a verbal or touch prompt. He told me his brain tells him he can still do a lot of things, but his body just won't let him. He suffered hearing loss about 9 yrs. ago, w/ no medical explanation, and has a cochlear implant.

We decided to give it a trial run two days this week to see how it goes for all of us. Today was my first day and I feel like it went pretty well. They expressed being pleased also. I guess I'm just experiencing feelings of uncertainty that I'll be able to provide the best quality care possible since private, direct care is new to me.

One of the biggest challenges I faced today was remembering to let him do for himself and reminding him he needs to instead of immediately responding to his request. It sounds like the former caregiver may have been doing a couple things his wife says he can do on his own and he became used to the help. She would tell him to stop trying to "con" me into doing it for him in a joking tone when he would ask me to do something.

I don't really have any specific questions yet, but would appreciate any feedback you may have. Thanks so much for taking the time to read this. ((((Hugs)))))

By Pearly4 On 2012.05.06 19:14
I hope you aren't feeling ignored -- its a little difficult to know how to respond and yet as a former caregiver I know how desperately feedback and information is needed! My mother had Parkinsons' and died of a "cardiac event" almost 3 years ago. My husband and I provided her care for 5 years before her death. I have to say caregiving is one of the most difficult and least appreciated jobs around, whether you provide care for a relative or are a paid caregiver. I would never want to do it again! (Though I'm sure I'll step up if needed by husband or children!)

There is nothing simple or cut and dried about this disease except that it is going to be a difficult journey for all of you and it is not going to identical to any other caregiver's journey! The disease progresses differently for each person effected by it. Some progress quickly, some don't progress beyond a particular point. Some have dementia (most?), some do not. Some maintain a greater mobility, some do not. Some can take the medication without problem, some cannot atke any medications without great difficulty.

There are very few genearlities. You will find a great deal of information available to you on this board - both from posts and from sources listed -- I can only advise you to read, read, read, and ask questions when needed.


By karolinakitty On 2012.05.07 15:33
Like Pearly said...nothing the same for all pders everyone is different...

I just did a webinar on caregiving and the biggest thing that Parkies said about their caregiver was they did too much too soon...Let him do as much as he feels he can...don't let him veg and get used to being waited on hand and foot...
Learn his limitations...again everyone is patient...easier said than done...but..take things slow...conversation... movement all of it is slower in PD so reciprocate.....educate yourself...learn as much as you can about PD..there are the basics and there are our everyday struggles and moments...
of course...keep the meds very inportant...time IS a factor..note any personality changes..could be an adjustment in meds or dementia..common amongst PDers...keep him as active as he can be...even in mind....allow him freedom but give him structure....

I am not a professional caregiver but am an advocate for PD, as well as being a caregiver...there are many sites to get info from but check out old posts here ..they may help...if certain issues do come up just type a keyword in the search and you can topics on can go back as far you need...just type in say 365 in the days and it will take you back a year

Beside general care do you take him to doctors and such? just curious....

By RATsLinda On 2012.05.12 02:43
I'm heading to bed momentarily, but wanted to express my gratitude for your responses and support.

His wife manages his meds and takes him to his dr. appts. I'm with him 3 days a week, one morning and two afternoons, for 4-5 hours each. My heart has grown, as well as broken, many times this past week.

By RATsLinda On 2012.05.30 04:32
I'm struggling with something that I hope you all can help me with. The wife of the gentleman with PD that I help take care of is extremely stressed and overwhelmed, which in turn has an effect on her husband and he appears to be feeling pretty depressed.

She comes across, unintentionally, as being pretty verbally aggressive and demanding throughout the day and has little patience with him. She's worried that the PD is progressing and she was hoping it wouldn't. Some of the things I suggest as an aid in getting himself up, such as extra bars around the toilet, she says she doesn't want to get any of that stuff until he absolutely has to have it. She wants him to be independent. I don't want to hurt her anymore than shes already hurting. I want to help her so badly, but i want to do it kindly and healthily for all of us involved.

For example, she'll ask him to lift his leg up to put his pants on and I feel like he doesn't have time to respond before she's saying it louder and adds, "Come on now you know you can move it, you need to stay independent." Or if he says he's stuck on the toilet and needs help up, she'll say, "You've been using this bar to get up for the last 5 years so there's no reason why can't you do it today. I'm NOT going to lift you."

She's very open to talking to me, but when I suggested a support group today, she quickly said she wasn't interested in that stuff and didn't think he would be either. They don't have internet service, so referring her to things online isn't an option. I printed a few things that discussed the progression, different assistive devices that seemed like they would increase his ability to be independent, but she brushed them to the side and said he doesn't need any of that stuff yet.

When I asked about med changes, she said the dr. had given her prenatal vitamins to give to him. Something about iron. But she said she doesn't want to add any meds because he has too many already.

I shared with her that he said he'd been having hallucenations. First he mentioned seeing blue lines all over the place and he reaches for them and looks like he's pulling them apart. He said he's been seeing bugs lately too. When I asked what kind, he said all kinds. He did quite a bit of scratching in various places today. She said it could be his meds but that he had mentioned seeing similar things a couple months ago and then just stopped talking about it.

How can I give her the support she so badly needs? My heart aches for both of them and I want to help them feel happier every chance we get. I really think both of their well-being could improve w/o so much tension and sense of urgency. He simply can't respond swiftly and sometimes not at all. And I fear the repetitive negative tones such as, "Well you used to be able to do it", etc. may result in more depressive symptoms for him.

He expresses how bad he feels when he can't remember something, when she yells at him, etc. She expresses how bad she feels when she has a meltdown and yells, etc. They make up and they're ok, but I'm thinking all of that precious energy and time could be spent in more positive ways to benefit them both.

How in the heck can I communicate my thoughts to her w/o making her feel bad or guilty, etc.? Please share experiences and advice. Thanks so much.

By lurkingforacure On 2012.05.30 05:17
My two cents: this lady needs a cold hard dose of reality. PD DOES progress, it DOES get worse. Yelling at her husband, making him feel worse than he already does, taking her frustrations out on him, etc., etc., etc., will not change the course of the disease. It may make him progress faster, actually, since it is having a negative effect on him. Her approach is certainly not helping create a harmonious and loving atmosphere in the household. What do their children say?

I'm all for being independent as long as you can, too, I think everyone would be. But even without PD, we all age, lose abilities, can't do things as fast as we used to (if at all), it's inevitable, and faster with PD. She needs to understand this. It does not sound like she has really accepted PD. Perhaps she needs to look at the five stages of grief, I think it has been posted here several times and I know it is all over the place outside the PD world. You could print it out and give her a copy and perhaps that might help.

Is there any clergy that might help? Denial is a long river, as they say, but it always ends at the same place.

By Pearly4 On 2012.05.30 12:01
Rock and a hard place -- I'm sure the lady is terrified at what's happening and how she's going to cope, and I'm sure the PWP is terrified with what's happening and how he's going to cope! She doesn't seem to understand the concept of staying independent means making adjustments and making adjustments doesn't mean he's less independent. How could adding bars for the bathroom do anything but increase his independence? I guess if I had to side with one or the other, it was be the PWP -- but in your place, I'm not sure how you can do it other than by sticking your neck out and risking your job! Can you suggest a visit by a Aging Resource person to help educate the wife? She's actually, in my mind, bordering on elder abuse - maybe if you gently pointed out to her that while you understand her intentions, SOME people might view it as abuse?

By karolinakitty On 2012.05.30 20:11
Rats...what a hard place you are in.....

I agree that she is borderline abuse here, mostly verbal but it still hurts....That may be why he seems to be progressing...stress on a parkie can lead to more off times, increased symptoms, and depression....

As was said...getting things ahead of time..only helps the issue when it arises...

When we moved into our new place, even though he wasn't dx with PD, we more or less had it figured out...

we installed handicap ramps all around the house and shop, installed grab bars in showers, around tubs, a walker at a flea market, he made his own canes, made sure door widths were good for wheelchair, we have a dbl wide, and really tried to make our home handicap furniture in main pathways...everything stays where it is ... no movement of furniture...parkies get up in the middle of can't do that.....

she also may be fighting in her mind his if saying.... if I don't put up rails he'll never need them....

Shoot I even use the rails near our garden tub....makes it easier getting in and out.....doesn't mean I'm failing...just means I'm taking it easy on my

Too bad you can't get her to some here and check us out....or there are several caregiving booklets from APDA and NPF....they are very John Hopkins has some really good papers on caregiving but they are costly...the other ones are free.... is good.....and there are so many just need to look....

I think if you are a licensed caregiver or collecting your wage through medicare or through the individual it would be up to you to call in someone to give a home assessment.....they can then recommend what she should do and maybe persuade her better than you since you are closer to the situation....

By RATsLinda On 2012.05.30 21:11
Thanks so very much for all of your suggestions and advice. I plan to talk with her tomorrow and discuss the advantages of having more assistive devices available for him to use. A home assessment sounds ideal. What steps would she/we need to take to make that happen?

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