Help with PALS that doesn’t want help

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Pajamaguy2828

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Hi All

This is my first post and thank you for a place to get informed. My MIL was diagnosedin Nov 2019 and has had symptoms for more than a year. After the diagnosis (while relieving) started a new journey of care. Lately my wife and I have had difficulty in her Mom asking and accepting any help she may need to perform basic personal tasks like eating and the restroom.She has always been a very independent woman who took care of her family and has had trouble with any help we offer because she feels like a burden. Her kids (2 are nurses) and their spouses are trying to take care of her ourselves because she doesn’t have the financial flexibility for outside help. Everyone is trying to be patient but our lack of experience with ALS feels like we do everything wrong. Her hand grip and walking strength is declining and swallowing and talking are lessening as well. We are looking for ways or phrases that tend to resonate and be effective in asking a PALS be more receptive to accept help from their children. Thank you
 

lgelb

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Hi Valley,

A sad welcome to the CALS ranks. There's another thread with some related thoughts. Most PALS become less resistant over time, if only because they have to. Staying available, letting her know you don't see it as a burden, and that she has options, is the best start.

As for how to help, there is a wealth of information here and in caregiver guides on line, but of course we're always here for any questions and rants that you have. For a start, it sounds like a rollator may be in order if she doesn't have one, and setting the wheels in motion through her clinic for a power wheelchair order, since that takes a varying number of months to happen.

Best,
Laurie
 

affected

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Sorry you are here.
It may be worth seeing if you can get her to describe how she wants to see things happen for her.
With her speech declining, it may need to be done slowly or using paper or a computer.
Does she have her legals in place - her living will and POA?
Maybe she would be happier going into care, or maybe she would rather only have family do some kinds of things.
Maybe if she says what she wants she will feel more control.

This is only a suggestion, you may have tried it this way. I just know that often suggesting that you do this or that, can have them respond as though they are being told what is going to happen (not that you are doing that, but as you know getting things across the way you mean them can be really challenging!)

Search threads here with the search box, read the resource threads at the top of the general forum, and ask lots of questions. This place is full of awesome information that can help you all.
 

Dee Dee 0617

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Hi, I love the people here, they are so nice. I tend to get into trouble because I don't have a filter, or tact.
First off I am 60 and was diagnosed 2016, and am currently paralyzed from the shoulders down. I was and am an extremely independent person. This was absolutely the worst disease for me to have. There's no plan of attack, or treatment to be had. There is no cure , or hope. So to quote the famous Bette Davis - - Fasten your seat belts it's going to be a bumpy ride.
You might think of a better way to identify your Mother - In-Law. Because I, well my brain (where is Kevin when he's needed ) added a letter and I almost shot soda out my nose.
You used the word relieved, a death sentence is not a relief to the one receiving it. You asked about words or phrases that she might be more receptive to. There is only one. Mom, I'm here, let me know if you need something. Anything more and you usurp her independence.
If she is poor enough, she could be entitled to Medicare and Medicaid, which will pay caretakers to come into the house. I'm allotted 56 hrs p/wk through Medicare and Medicaid then 5 additional hr p/wk from ALS Michigan. She might be more receptive to an employee.
The next part is rhetorical and introspective. I have 3-sons,there are things I just don't want them doing for me. This includes feeding me. I love my Daughters - In-Law, but I would tolerate nothing from them. You have to be kind, and loving, and care about what they are going through, and how they're affected and blah blah blah by the reality that you're dying. If one more person asked me if I want____ (fill in the blank ) I wanted them to become Lots wife. I started to get pretty crappie saying the meanest things. Questions like are you a mind reader, and they would end up hurting and I'd say knock it off, if I want something I'll let you know. Now take your healthy legs and go away. With employees you are not part of their personal lives so they're not as emotionally crippled by what your going through. When one of my sons come for lunch, my aide sits to my right, she feeds me when I turn to her, she is not part of my conversation, she is not a luncheon guest, and I have no qualms about dismissing her when I am full, or would like to speak privately with my guest . It is much easier to say what I am in need of to someone whom I am paying to accommodate my needs.
How long have you been a part of her family? What was your relationship like before you were relieved by her death sentence -? Does she like you? I have one Daughter in law that has been married to my eldest for 17 years, and one that has been in the family one year. The relationships are very different. What I will excuse them for is very different also.
I couldn't be a caregiver, I don't have the countenance for it. I am eternally grateful for the women I have with me. They allow me the opportunity to remain in my home, keep my dignity, respect my privacy and to make my own decisions.
 

KarenNWendyn

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Here’s my 2 cents:

1. Make sure you, your wife, and your MIL are all on the same page about what ALS is and will do. She likely has a degree of denial. See if she has any questions about ALS. Would she be willing to attend a support group with you and your wife? Would you and your wife go to an ALS Clinic appointment with her? Or attend a telemedicine conference with her and her doctor?

2. Even though she’s not exactly newly diagnosed, all of you might want to take a look at this: Resource - If you've just been diagnosed - what to do now?
“Mom, take a look at this. We’re happy to discuss it with you.”

3. Let her know, “Mom, we are here to help you when you need it. We love you and want to make sure you’re safe and comfortable. Just let us know what you need and when you’re ready.” And then follow through on a regular basis.
But be prepared to give her space when she wants it.

4. Show her this forum.

Good luck!
 

Nuts

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As you may already know, there is no right answer to any of this. I think we can only share our experiences and you take what you think might work for you. Reading through past threads is a fabulous way to gain insight (this group saved me and helped me become a pretty good caregiver).

One of the toughest challenges for me was to back off and not hover, and then to realize that my independent husband was just going to go outside alone and turn over his power chair in the yard--and not having the freedom to be alone would have killed him long before ALS did. I had to back off and allow him to struggle or do what I considered dangerous things knowing that I'd just fix what I could afterwards (a portable lift is a lifesaver). It took a long time to get there, but I finally realized that it was his life, what was left of it, and he needed to control as much as possible.

As for accepting help--it's a slow process. He refused anyone but me helping him for a long time. The first time a caregiver came to shower him he told me I had to be out of the room because it would be too weird for him to be naked in front of another woman with me there. Several years later we had three women in the room and he was stark naked chatting with everyone. I watched the pros and took cues from them--I just acted as if everything was normal. If we didn't show embarrassment, he didn't have to feel embarrassed either.

I would suggest asking your MIL what level of help she wants right now and letting her know that you are happy to provide more when she is ready. It's hard to do that, among other reasons because it takes longer and is painful to watch someone you love struggle to do something themselves--something you could do quickly. In my opinion, the exception to letting it go is when her inability to so something properly endangers someone--whether herself or someone else. Not being clean after tolieting can cause skin breakdown, which will make her less comfortable and create MUCH more work for you. You know this, but perhaps she doesn't think of it that way. Explain to her that helping her is a joy--an act of love that few children have the opportunity to experience (and yes, it can be), but that refusing your help can create an unnecessary burden (more medical care, more laundry, more cleaning, etc). Also point out--gently--that it's easy to help her transfer but much harder to pick her up off the floor.

I know this book is too long. I'm sorry. I hope you find a way forward that works for everyone.
 
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