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Urgent question need advice


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#1 Beau's Mom

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Posted 06 July 2012 - 11:08 PM

This my wife's log in she is to weak to type. need advice. My wife is having sudden loss of energy that last several hours, The meds are being adjusted. But it is still happening. When this happens she walks and very slowly even with a walker.Chewing takes to much effort. She feels helpless and irritable. She can't get comfortable, Very stressful for both of us,She can only lay on her back.Do to hair loss she wears a wig. When laying down she takes it off I shave her head when it gets a quarter inch long. AS it grows out it is irritated by the pillow. I need to find a way to keep her head impermanently bald. I don't know how to make her comfortable when she hurts all over and doesn't have enough energy to adjust her pillow I don't know how to be a caregiver. Can anybody help?

Ray
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#2 Ken_S

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Posted 07 July 2012 - 05:46 AM

Ray:
I wish I had a solution to your hair problem but I don’t. I just wanted to object to your statement about not knowing how to be a caregiver. It seems to me that you are an incredibly good caregiver and even though you may not know how to solve every problem that comes up, your efforts alone must give your wife great comfort.

Improvise, Adapt and Overcome


#3 Golden01

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Posted 07 July 2012 - 09:12 AM

Ray, I agree with Ken_S. You seem like a wonderful caregiver. Knowing what to do can be hard.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#4 katiemae

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Posted 07 July 2012 - 05:37 PM

i also think you sound wonderful and your wife is luckier than my mom, you are more patient than me and have clearly been doing it a long time, too.

I don't know how to keep her bald, but I have two thoughts.

-Try a silk satin pillowcase (it's slick, not like cotton, so might not be as irritating). Try to find real silk, not polyester, but any satin material might be better than cotton.
-Try letting her hair grow out? It might be that the razor stubble is what is irritating - it would be to me. If her hair were an inch or two long it might not feel as irritating.

Good luck.

#5 tedybrs

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Posted 07 July 2012 - 07:00 PM

Hello Ray,
Your wife is very lucky to have you! Please don't give up on her! She continues to need you, her rock!
I am my husbands caregiver and believe me I don't enjoy it, and I know Rick doesn't love it either. Neither one of us asked to be touched by this awful disease,however I will always be here with him! I am in the process of getting help. 2-3 days a week for a few hours so that I can do something for me. My husband is constantly needing help. He wets himself and the bed so I am up several times each night to change the sheets. I begin the day at 4 am getting Rick's medicine. He then wants breakfast and we start the day.
I write this so that you know you are not alone! There are many of us including you that are angels on this earth and we are here to help our loved ones. The idea of satin sheets and pillow cases was a grat idea. Good Luck and hang in there! Harolyn

#6 katiemae

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Posted 08 July 2012 - 09:11 AM

Hi Ray,

I also talked to a friend who recently went through chemo for a stem cell transplant and lost all her hair. She also shaved her head at the point where she only had wisps and clumps left. I asked her about your wife's situation and she told me that what she found helpful was a very soft, very tightly knit "beanie" cap to wear at night - like the kind they use for newborns in the hospital. She said this minimized her discomfort, but you may have to try several before you find one that works and that it needs to be really smooth knit so as not to "catch" the hair in the cap itself (defeating the purpose).

She could not remember where she got it and no longer has it, but you could perhaps look online.

I found this website and from her description this sounds sort of like what she used. I can tell the solid colors are a fine gauge knit:


www.boldbeanies.co.uk

I think you want to get one that is a little stretchy and fits snugly rather than just a scarf type.

Just FYI, My friend also gave up on the wig and began wearing scarves, caps, etc. because the weather here is very warm and humid and a wig is just too uncomfortable. She looked gorgeous in her scarves and caps which covered enough of the "bald," and not having hair just drew everyone's attention to her strikingly beautiful eyes. Her hair has grown back now but she has kept her hair in a very short style because it really is so attractive on her.

#7 Horse N. Buggy

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Posted 27 November 2012 - 02:42 PM

A word of advice on the beanie... I have hair, but I suffer from migraines. I find that if I keep my head warm at night, the migraines are less likely to hurt. Since winter has just started, I found that the local drug store was selling these beanies for $2. I bought one hoping that it would do the trick. It worked great the first night. But now it's too big to stay on my head all night. Now, there are several factors in my case that are different from your wife's: 1) I am not bald 2) it sounds like your wife doesn't move her head around at night so maybe it wouldn't slip off her head as easily as it does mine 3) I bought a one-size fits all, as a woman I probably should have bought a kid's size 4) I got the beanie with no edge, I think a longer cap would feel like it is not slipping off my head.

So while that particular $2 beanie didn't work for me, I have not given up on the idea.




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