Mil update

[JOSIEM02]

Just wanted to give you all an update on my MIL. She had a very nice 2 week visit with her sister and brother in law. They took care of her while we worked but we saw a hugh progression in her right hand and arm and her left leg while they were here. We were surprised that they noticed. We had a family talk with her, her sister, brother in law, my husband and I. At this point her daughter and I had words 3 days prior to this and she showed her mother her true colors. She told us she wasn't willing to help anymore nor did she want to and that she wouldn't be back. So I changed my hours worked with her aides boss to change the hours she came. Barb (MIL) was thrilled but we asked her if the time come that we weren't able to care for her with the progression or she felt it was time that she would agree to a nursing facility. We have always went by her wishes, her body her choice. The first day of the change didn't go well at all. We knew it wasn't a going to work because there were still times she would be by herself. Her hands are no longer working, and now her left leg, her good leg was failing fast. She only walks in and out of the bathroom and that is a hugh struggle with her head drop let alone the legs. 2 hours before I was to leave for work she had a scare with the suctioning and it was then she told me she was afraid to be alone for any amount of time. So I asked her what the answer was and she said a nursing home. We are still in the process of trying to get in home care but they tell us that is weeks away and they can't tell us how many hours it will be when it does come. So we worked with Hospice and yesterday she was admitted. It tears at my heart knowing she wants to be home with us and we want her home with us but it can't be right now. My husband feels like a failure and I tell him he's not. We know that they can give her more care hourly then we can but it just isn't right. You work all your life to end up like this. At her last clinic appointment they told her she probably only has 3 months because of her breathing and that was 1 1/2 months ago. I really don't think she will come home to stay but I pray that I'm wrong. I hope you all are doing well and I have missed you all. Sending prayers and blessings to my forum family. Josie

 

[abbas child]

Josie, sweet girl. You are such a good "daughter"... which is what you really are to your husband's mother. I pray that your husband will be able to gain some peace about this, since it seems you really had no choice. It is just a sad, sad situation for you all. Know you are loved, and thank you for coming in and telling us the update.
Ann

 

[JOSIEM02]

Things at the nursing home arent going so well. Most of the nurses have never cared for someone who has ALS. We are finding out that alot of nurses don't fully understand ALS. We have had several rounds and tomorrow will be another. The one head nurse made Barb a new ABC chart and another chart with phases that she uses. She had a nurse come in today and

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[JOSIEM02]

Sorry, A nurse came in today and Barb didn't have her chart on her lap and she was trying to tell her what she wanted and after the 3rd time the nurse told her she didn't understand her and walked out. That is just one of the problems but they will understand tomorrow. These problelms have been horrible for her and just make her want to come home even more. We are still waiting for the PDA waiver, haven't heard anything yet. It is incredable, through this whole thing Barb keeps smiling, for the most part. It just makes you wonder if her decision was for the best. I know she can't be alone but I still don't know. Prayers to all Jose

 

[luvnmm]

Josie - I am so very sorry to hear things aren't going well at the nursing home. How awful that your MIL is being treated this way. I know you must be extremely torn right now. You are such a good person and it sounds like you are in quite a dilema. Please keep us posted on how things go. You are in everyone's prayers.

 

[brooksea]

Josie, so very sorry! Hope things get better for her! It's sad, but true. Health "pros" do not know about ALS and sometimes have no tolerance or understanding (in my experience) outside the ALS clinic.

 

[Northern Dancer]

Josie,

I understand your sorrow and frustration about your MIL's care. Because ALS affects only about 2 per 100,000 people in the US, it is not uncommon for a nursing home or care facility to have never provided care for a person with ALS.

It is one thing to be educated about MNDs like ALS and MS and understand the process of these diseases but it is another thing entirely to comprehend the magnitude of providing 24/7 care and to do it well.

Perhaps you could ask the administration to schedule a few meetings with staff so that they understand what she (as an individual and not just an illness ) needs. If a family member could attend as well, it would be an excellent opportunity to educate and personalise this disease and make the situation as good as possible for your mother in law.

I supervised an aide who was caring for a person who could not move at all. I listened in horror as the staff told this woman ( over the intercom ) that she had just repositioned her and that she would just have to wait. I took the staff member aside and asked her to imagine herself in the patient's position, to imagine the discomfort of being stuck on a wrinkled, lumpy sheet and be absolutely unable to change her position. It was much more effective to personalise the helplessness of the patient than to show my outrage at the staff's ignorance and what seemed to me to be a lack of empathy. It is not an easy job and everyone has to understand and work together.

You are in my thoughts.

ND