signed out of hospice

[AngelaRenee]

Mom was diagnosed a little over a year ago, can barely walk with my help. Her feet are curling in, legs are very stiff. I literally have to bend her legs for her. Sometimes I feel like I am hurting her because I bend with all my might but she claims it doesn't hurt. We have to turn/shift her completely, standing and laying down. I used to be the best translator for her, but now even caring for her 5 days a week I am unable to make out her sentences. At times she says "just forget it". She signed out of hospice to get the peg tube. We planned to sign her back right after the surgery. The nurse evaluated her today and told us her progression is much slower than most of their other als patients. She referred home healthcare. I am hoping this a good decision. We contacted "pinky" the als representative of the southern Ohio chapter and she is going to let her try out the eye gaze. I guess I am just wondering if anyone is experiencing similar issues. Or maybe I just need to talk to people who understand my struggle. Thoughts welcomed. :grin:

 

[AngelaRenee]

Also didn't mention her hands, completely immobile. I used to do range of motion on her hands and arms but we eventually stopped. I feel guilty that maybe if I kept up with her she would be better. I care for her when my father is at work and sometimes after to help with dinner. When she naps, I nap. Its still exhausting trying to keep up with our three dogs and the housework. Maybe I just need to set a schedule?

 

[Barbie]

Hi Angela

Please don't feel guilt! you do as much as you can--and from your description it is a lot. there is no reason to feel guilt it only hurts you. Range of motion is important, but you need to realize that she would not be better if you had continued--she is losing her function whether or not you exercise her. However, range of motion is very important to keep her joints loose and will help her comfort levels. I would suggest you start again, if only for 10 or 15 min. a day. if you miss a day--it isn't the end of the world! her legs sound very spastic--and I know my husband is the same. I can barely move his feet and legs. I look at it as my workout! LOL

I have to ask my husband all the time to repeat also, and it is frustrating for him but can not be helped. loss of communication is very depressing, so I am glad you are moving forward with the eye gaze. also, there are other methods you can use like a spelling board with letters and common phrases on it. you can point to them and she lets you know when you get it right, or you could watch her eyes. low tech, but effective. you could make one yourself on cardboard with markers.

Listen, you are smart to nap when she naps because this is exhausting! I hope you are getting out with friends your own age at least once a week. you do need a break . Even though at your age, most are not facing what you face and you are probably more mature that your friends, it is important to remember that you are only 21 and forget your problems once in a while.

As far as hospice--we were taken off because my husband also is slow progressing. some hospice will not do that, but ours did. home health care may work out for you, but usually there is a 90 day period and it is specific for a nursing problem--like getting her peg tube. once that is established, medicare will not continue to pay for it. I ended up hiring a CNA for a few hours every day. A schedule is a good idea--be sure and schedule in some free time for yourself!

You hang in there Angela-- I think you are doing a great job.

 

[AngelaRenee]

Thank you so much. I just need reassurance once a month it seems.

 

[KKay]

we have a pair of prosthetic boots for my husband. They are nothing more than braces lined with fuzzy lambs wool (?) and straps to keep his feet in a standing position (ankles bent). They are a little uncomfortable so they go on and off periodically. This definitely helps to break the "tone" down his back and in his legs. He does feel better having worn them for a little while. Botox injections can also help with the "tone". He tried this once and it did help a little but I don't think he liked the idea of it (and we had to travel an hour to get it) so he didn't do it again. Range of motion and massage therapy helps with blood flow, which will help mitigate some pain and is good for the health of their skin. Because everyone is different it is often trial and error to see what works. Hang in there, you are doing a great job. Make sure to rest and find ways to clear your head. Often answers come when we aren't in the middle of it.