New Member Needs Advice on Caregiving

[ceegee]

Hi,
My mom was diagnosed this summer with ALS. She is walking slowly with a walker right now but its getting more difficult. I was hoping you all could share some ideas on how you care for your loved ones at night. Right now my brother is gettting up 3-4 times a night with her and he cannot continue to do it. I have a newborn so i can't stay with her at night. Any ideas would be appreciated.

Also, she is having difficulty moving around in bed. Should we look into getting a hospital bed so she is more comfortable or is it too early.

 

[BethU]

ceegee, is your brother getting up with her so she can go to the bathroom? If so, would a commode beside her bed help? Would she be able to use it safely by herself? The ALS Assoc. has them to loan to ALS patients.

Have you registered your mom with ALSa yet? They have practical solutions for almost everything.

About the hospital bed: I don't think anything's "too early" if it improves the comfort of the patient.

Take care.

 

[CindyM]

I know some PALS rely on a trapeze-like apparatus to help them pull themselves around in bed, but this requires strong arms and not everybody has that luxury. Some CALS found that satin sheets make moving the PAL a little easier, but I have read cautionary tales there. You don't want the sheets to be too slippery.

I think Beth is right: you need to find out the reason why your brother gets up, in order to figure out a solution. When you know the reason, try a search from the tab at the top of this screen. Lots of good advice around here! :smile: Cindy

 

[califsand]

Sleeping at night is SO important for both the ALS patient & the caregiver! We used depends at night for Dad and that helped, as well as having a commode next to his recliner (he didn't want to sleep in the bed since he couldn't get out of it without help) and for a while that was good. We got him a recliner that would lift to an almost standing position and had a rail for him to hold to get to the commode which was right next to him. This worked for several months! We used sleep aids for him as well... he preferred a nightly cocktail and didn't enjoy the feeling of sleeping pills. With these measures we were usually good until 4am!

 

[ceegee]

Thanks for the advice, she is getting up to go to the bathroom. we do have a commode next to the bed but she needs help getting in and out of the bed. what we are thinking of doing is having a different person sleep over each night to share the responsibilities. Iwas looking for suggestions on how many caregivers are needed for a patient. thanks for your suggestions

 

[robinswife]

ceegee I had the same problem with my husband and I discovered that being in the bed made him panick because he could not move so when he slept in a chair that reclined he felt much safer and as for going to the washroom at night I to had many sleepless nights because he would try to go on his own and would fall or not make it he finally put night time protection on him and he started sleeping through the night . I feel by not making him feel he has to worry about it and he felt safe he hardly ever goes to the washroom at night its like the little kid when you take them out they always have to go to the washroom as soon as ther is'nt one around
god bless you

 

[Bill3519]

My wife has had ALS for a couple of years now and is approaching the final stages. We live in Georgia, and there is a state Medicaid program here that helps with providing an aide to come to the house. The program is called personal support and it took several months to get approved, but has been a tremendous help. I work nights and so the aide comes while I am at work and also stays for awhile in the morning. We got approved for 60 hrs./week, so she comes 12 hrs./day, 5 days a week. So as far as the number of caregivers, we are using 2 right now, the aide and myself. Medicare and private insurance will usually only help out when it is deemed medically necessary for someone to come to the house, or as in my wife's case, a doctor documents that a patient has less than 6 months to live. So we also have a hospice nurse that comes out twice a week. The ALS Assoc. has also helped out by arranging for a volunteer to come out every 2 weeks to help out with housecleaning. That has also helped out a great deal, as I also have a 26 yr. old quadraplegic son who also lives at home. I have found that there are some services that do help, but it takes alot of searching to find them sometimes.
Best of luck.

 

[ceegee]

Thank you for all your thoughts and kind words. god bless you all.

 

[linray]

Als-ny Fund Raiser

To all my new friends on the forum:

I just wanted to share a good moment with all of you. Last Monday night there was an ALS Sports Award Dinner in NYC. My husband and our daughters were there. The attached photos show us with John McEnroe, Sandy Koufax and Bob Costas. We got to meet and talk at length with them and many other celebrities! The evening was to raise money for ALS and included an auction of so many great gifts. The dinner opened with a short video focusing on an ALS patient and how they are dealing with this dreadful disease. My husband, Ray, was the star of this video and we are so proud to be able to support this fund raiser in this way. It was very difficult watching ourselves (they interviewed the whole family) but if it raised money for ALS we are very glad.

Hope you enjoy the photos.

Lin:smile:

 

[brendapals]

Great pictures!

Thanks so much for sharing such an inspiring story-one more way to spread awareness!

take care,
brenda

 

[linray]

Brenda,
Thanks so much for responding. It was a great night for us and for ALS awareness. I am so proud of my husband and how he is handling this.
I feel I have made many new friends here who really understand what we are going through.
Lin

 

[brendapals]

Lin,
Ok, here we go, I'm going to try to see if I can post some of the ALS walk pictures right here.

Well, it didn't work, but I will try to get one of my teenagers to do it tonight. I will also try to add them to my photo album under my name.

Again, yours were great, and I hope to share some of mine with you and all my other forum friends!
Have a great weekend,
brenda

 

[linray]

Brenda and all my forum friends,
Jut a follow-up to my post about the ALS dinner. If you go to als-ny.org you can see the video that was shown at the dinner. Hopefully, this helps in some small way to promote awareness and it gave my husband something fun to look forward to.
Lin