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biotron2000

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I need help and advice. Has anyone had to put their PALS in a facility? I just can't go on like this anymore. My wife has had ALS for six years and I have been taking care of her for five. She cannot speak or eat, and she has a permanent catheter. She has a laptop with Dynavox software that she can only use in her recliner and if her head is propped up just so. I am afraid putting her in a home would be cruel as I would be taking her away from her only means of communication and entertainment, but I am beyond burned out. I don't even know if a place would take her as she needs constant attention.
Help! I don't know what to do!


Patrick
 
Patrick.....you sound like a very honorable person, who may just need a break or some one to come in three or more times a week to lighten your load.
It will be interesting how others respond to your dilemma....as there are several CALS who are in very similar positions.
One of my biggest fears is the "rest home dynamic". I would hate to be placed in one, having been through that scenario with my mom and dad.
Good luck on finding a resolution!
 
We have help coming in three hours a day Monday Through Friday to get her up and showered and dressed, and I do everything on the weekends. I hate the idea of putting her in a home but I'm afraid I may have no choice. This is killing me. Not to mention she is starting to have needs that are beyond my ability. She wants no help breathing, or anything that will prolong her life. But she is not showing any signs of her breathing slowing down. We have been in a holding pattern for the past three years.
 
welcome Patrick, but I'm so sorry you have joined us.

I cannot imagine being a CALS for that long. You are at a true crisis point and this cannot be neglected. Carers DO burn out, and it is serious.

I'm afraid you have no easy choices here now. If you choose a facility you will have to work through the guilt. If you don't, and you burn out you will both be in a hospital.

Please, first thing is find out what facilities there are around you that can take PALS, then what the vacancies are like, if there is any respite bed that you can get an immediate break.

Information is powerful. You can't really say it's time for 'a' home, you need to find out what is available and then decide if it's time for the best place you have found.

Talk here, you have found the right place to get help!
 
Patrick--honey you need a break bad before you crack. 3 hours a day is just not enough after 6 years. call in Hospice--even if she is not progressing I am sure she qualifies at this stage. hopefully they have a hospice house in your area--be sure and ask. if they do, perhaps she could go there for a week of respite. they would be more adept and qualified to help her than a regular home. while she is in there--rest, relax and think about what your options are.

If you decide on a home, then you will need to search hard for a really good one that can care for her. and be prepared to spend a lot of time there yourself... another option if you can afford a home is to get A lot more in home care. I would go with 12 hours a day, 7 days a week if I were in your shoes and that burned out.

You must get more help--3 hours a day is not enough! You sound very down and like you are at your rope's end. that is a dangerous place so please--get in some help, call hospice, call your church, call your doctor.

hugs,

Barbie
 
Patrick, I so understand where you're coming from. I am the sole caregiver for my pals. He is on a ventilator, peg and bedridden. I have a CNA that comes over 3 times a week to help me with the hoyer lift and a home health care aid that bathes him 2 times a week. It seems when I am real tired the I have the same thoughts. With my pals being on a vent, he requires 24/7 care. It can be exhausting. I have been in this house up to 6 weeks at a time and thought I was going crazy.

Finally I found someone to come and sit with him for 4 hours once a week. What a difference that has made. You need help sweetie and the sooner you find it the better you will be. If you don't take care of YOU - you cannot take care of your pals.

I'm hoping you can find someone to volunteer or someone reasonable for you to have some relief. It's a hard journey. I wish you strength!

Debbie
 
May I ask you Americans..how does home care work there? Do you have to pay out of pocket for every minute of it?
 
most of us have to pay out of pocket unfortunately. it is tough. some folks have private insurance that will pay--or long term health care insurance . Veterans have some hours of covered care also, and I think if you are on Medicaid you also qualify for some. my husband is on Medicare with no private insurance. I work full time to pay our living expenses and his disability pays for his CNA. hospice is free, but not full time or even part time.
 
You need a break! Caregiver burnout is very risky for both you and your wife. I can say from experience that your stress is probably affecting her, too. I'll let the CALS here advise you, but i do have one suggestion : Have you checked the state resources available to you '? I know my state provides help in some cases, but I'm too young for my caregivers to qualify.

Also, when was the last time you went to clinic? It's the wheelChair rep's and the seating specialist's job to make sure she's comfortable in her chair with her device. As it will be the nursing home's job if you go that route. You might be able to take the chair and show them how she likes it. I should take my own advice, because I've needed more neck support for a while. I prefer my easy chair too.
 
We've tried everything we can think of to get her to be able to use her machine in the wheelchair, but her neck is just too weak now.
 
She even has a Dynavox vMax with the eye gaze attachment, but it will not work with her glasses. Even the Dynavox rep couldn't get it to work.
 
Have you tried a headrest that holds her head up, like Hawking has? There are a few on the market. Some look like claws and some look like a regular headrest that has the sides extended. As for the glasses, I'm very sorry about that. Does she have a glare protection coating on the lenses? The reps and customer service people always tell you to try it without glasses. Why should i when i can hardly see the computer? They never suggest glasses with an anti-glare coating.
 
Bootron, have you tried a head/neck brace. I pick mine up Friday, so I don't know if it will allow me to use an eye gaze device or not, luckily I can still use my hands. It's supposed to hold the head up straight and not allow movement
 
Yes, she has the coating, no help. :-(
As for propping her head up, if we get it too secure, she can't utilize the head mouse.
 
Patrick, as a CALS taking care of a PALS for almost five years I understand your position perfectly. I do not have anything more to add to what the others have already said, but 3 hours a day five days a week does not give you enough breathing room. Our hospice volunteer social worker did mention once that she is worried about me having a caregiver burnout, and we have about 8 hours of care everyday, and I go to work every morning.
What ever you decide to do, all of us on this forum will understand your reasons behind your choice.
 
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