Reality Hitting!

[paleobones]

Hi! I just recently became a member of this forum and just want to take a minute to greet everyone, and say that I have found all your comments so extremely helpful! I want to say a big thank you to those of you who share your situations to the rest of us. My husband was diagnosed 2 1/2 years ago and has been progressing very slowly, but within the last few months is loosing almost all use of his hands. He continues to have full use of his legs and breathing/swallowing is fine.
Would anyone, who has more experience in this process, be able to tell me what are some "first needs/Tips" that I should to know as I do more and more for him in the areas of grooming, clothing, and personal hygiene?

 

[Lavender Lady]

Hi there, Some first things is to contact your local ALSA and MDA and get set up so that they can help you with supplies he needs. I bought a bidet for the toilet to take care of protecting my dignity for as long as possible. The ALSA has supplied us with lots of equipment to help me be independent for as long as possible. I have lost the use of my left hand and now the right one is starting to become weaker as well.

Keep asking questions on here. There are people who have lots of wonderful ideas from thier own experiances.

 

[heymom05]

My husband nicked his cheek shaving and I was having none of at, so the electric shaver made an appearance in our home, as well as an electric toothbrush. Mornings go much easier with them. He does as much as he can, then i step in to help.

He still is our hero and we only help when we have to. He does as much as he can without exhausting himself.

 

[brooksea]

1) As Rox has pointed out, the bidet is wonderful and essential for dignity.

2) Invest in bibs unless you don't mind constantly trying to get stains out of clothing and your husband doesn't mind stained shirts.

3) Look into utensils, plates, bowls and cups that are specifically designed to help with eating, while maintaining independence. (My husband has been reluctant to let me buy these tools.)

4) Get a lift recliner (I'm looking into that now), as he will have trouble getting out of a chair without the use of his arms.

5) If you haven't made a roll in shower, look into that right away. If you can't do that, then sponge baths in the recliner work well. You just have to develop your own technique.

6) Elastic pants and shorts work best! Loose fitting t-shirts work well also.

7) If he can still open the fridge, but can't open a can, leave one (or more) open for him so he can have it as he wants it. (independence)

8) Look into voice banking for future use, before his speech starts to go in the slightest!

9) You may want to look at hand/wrist braces to keep the fingers from curling, so he can type and pick up things as long as possible.

10) Not being able to scratch is a HUGE problem! Might as well buy an old fashioned hair brush from the dollar store (plastic/nylon bristols - the typical 50's/60's brush). This will come in handy when your fingernails wear out! :wink:

 

[sadiemae]

The Body Shop - Long Handled Cactus Bath Brush I got Les a bath brush like this for Christmas. Paid 3 buck at Ross for it. It has the long handle, so he can scratch himself!

 

[Katie C]

Also got Glen a long handled comb from the arthritis supply place... he loved being able to comb his hair again!

 

[fba75]

My wife also started with arms first then legs. Without his hands, he must be really careful when he walk (inside and outside). If he trip and fall, he wont be able to catch himself or even to slow down his fall. It happens to my wife and she hit her face on the pavement, incredibly awful.

 

[paleobones]

Thank you so much!

 

[paleobones]

Thanks so much!

 

[abbas child]

A "Grabber", long handled and used to grab the endless numbers of things dropped on the floor, is wonderful.

Also, baby washcloths are much easier to use and to squeeze dry. Making sure the things he needs are within his range, such as near the edges of counters, tables, etc.

 

[LornaDoone]

How are you doing pale? You getting out with friends? Doing anything fun for yourself?

 

[paleobones]

Thank you all for your great suggestions. I appreciate them so much and just knowing that there are people out there who are "mastering" the technique of "care" so artfully is encouraging! An applause to you!

 

[paleobones]

Thank you Lorna for asking. I do try to have some "girlfriend" time, but usually comes with a price. Also I am embarrassed to say that it is getting harder to take him out to eat, because of all the complications. He does not feel that way, but I do. Anyway, at what stage it your husband?

 

[Pat Paine]

A home health evaluation by nurse,occupational therapist and physical therapist
would be invaluable to access for safety and equipment needs.
blessings, Pat