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SamSam

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So here's my story,

My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7 more months have passed and her left arm is useless her right had had very limited capabilities, but she is still able to use her electric wheelchair to move herself around the house. She can no longer hold up her body or head up. Eating has become difficult, things have to be cut up and drinks thinned out and in straw cups. She eats very little and her face has become shallow from weight loss. Her voice is frail and raspy, she mostly talks in a whisper.

Now there are a few extenuating circumstances that make this difficult. She live with her husband who is 76 years old, no young chicken. She won't let anyone else come into the home and take care of her no matter our pleas. We're not sure if it's just her or her husband as well that dislikes the idea. Although when talking to him he says it's up to her, but it's hard to know for sure. She is very dirty and I don't think she ever gets out of her wheelchair anymore, even for sleeping.

We've caused many a fight trying to get help into the home, trying to get them to fill out end of life paper work. We've told her she needs to do it before her voice is gone and she has less say in what steps will be taken when things progress. Still nothing is done. What makes this difficult for me is that I feel I can't talk to my husband about it anymore. Since we've tried and failed enough times, it's no longer up for discussion. I understand that. But now I feel we can't even talk about how she's doing at all. I feel trapped in my worry and fears for her with no where to turn.

I guess I'm looking for reassurance, suggestions, support, I don't even know. I'm worried we are getting close to the end, but I don't know? She's only been seeing the dr every 3 months and she hates going and obviously doesn't tell anyone what the drs are saying. Does anyone have any insight? Should I be preparing myself and my husband for the worst at this point, just in case? I know this could go on for years, but things have gone so fast I just don't see that happening unless she gets a feeding tube soon or does the tracheotomy.

Thanks in advance for any insight you can give. And for making it through this long posting.
 

Dave K

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That is a tough situation. Your local ALS Association chapter will have a social worker who has likely seen situations like these and may have some ideas about what may help. Have you contacted ALSA? If you have done this and there is still no solution in sight, it's possible that all you will ever be able to do is just constantly remind your in-laws that you are ready, willing, and able to help when they need you, and hope one day they ask for it.
 

affected

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Really hard stuff Sam but as she is dying, if there are no mental impairments she does have a right to have things the way she wants.

It must be so hard watching from the outside and wanting to help and change how things are being done.

Maybe you can find a way to just be there with her at times doing some things with her she enjoys. Rather than fighting with her in her last days, can you find some ways to give her some joy in her last days? That's worth way more than a bath - truly feeling valued and loved will do her more good now than anything else.
 

swalker

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I am very sorry to read about your distressful situation. It is obvious your intentions are good, but have been met with great resistance.

I agree with Tillie. Absent a debilitating mental condition, it is her life to live and she should be allowed to make her own decisions, even though those decisions may seem foolish to others.

Remember that she does indeed have a terminal illness. We cannot change the outcome. Nothing you or your husband do or don't do will change this. While being involved could relieve the load on her husband, it will not change the outcome.

Now that your assistance has been declined, you need to patiently wait and watch as the situation inevitably degrades. There will come a time when they will need your help. They will have no choice. Be ready to graciously offer the assistance they need at that time.

Be there for them in their time of need, but let them lead their lives as they see fit.

Steve
 

SamSam

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Thank you all. We had a nice visit over the holiday and as my husband and I discussed before hand, we left all mention of help out of it. We realize that there's nothing more that can be done on our part but wait. The hardest thing for me is watching and holding it all in. Which is why I posted my story here. Just to get it out and see that someone else is listening that can understand what a difficult time we are having. My family can sympathize but it's had to find anyone that can empathize with us.

The unknown is the other struggle for me. Since they don't want to talk about what's happening, we are left in the dark as to the stages of progression and how drs are feeling about longevity. I know this will be extremely difficult for my husband when the time comes and I'm nervous for an unexpected timeline.

Again, thanks to all for listening.
 

affected

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One problem could be that ALS doesn't have distinct 'stages of progression' - every PALS is different and progression happens differently, in different orders and at different speeds (and not always constant speeds). You will find here PALS that have been alive for many years, and PALS that are gone within months.

Doctors simply cannot give a timeline which is what you probably mean by longevity.

She has a terminal illness that is relentless and progressive. Apart from that, it will do what it will and predictions are impossible.

We know just how hard that is to deal with. The timeline is unexpected for all of us who are right there on the frontline.

I'm so glad you joined here where you can talk to people who understand and I hope it really helps you.
 
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