I feel the end coming....

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Tracy500

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As his speech is almost completely gone, and eating is done practically although he wants to try still,but isn't supposed to. His legs want to buckle in every time I try the gait belt for transfers. I don't know what to expect next. Will he last all summer? Christmas? Next week? How will we know. I am unsure that my kids understand fully what is going to happen as they are just turned 10,6 and almost 4 yr. olds. Life taking care of him wasn't what I thought it would be. I never imagined that it would be so difficult for me, physically, mentally, emotionally, etc... I miss my job so much. And we are trying to enjoy each day, but it's coming upon 2 years in just 10 days now that he was diagnosed. The last 2 years went so fast, he progressed so fast, that I don't even know how it's been 2 years already. And since everything is gone, lost, I wonder what else can this horrible disease do to him next? His body has nothing left for it. Except his breath! He is opting for no trach, so we sit and wait hoping for a plateau, or even better, a cure to reverse this to. Sorry for rambling.
 

scaredwifetx

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I am so sorry Tracy. I just logged on from my hotel room in Tulsa. I am here for work and can't keep my mind off Steve's progression. Seeing your post as my first post tonight, feels mean't to be. I wish there was a way to help comfort you as I know the fear you are feeling. I also know there is nothing we can do to change their progression and we are never ready to watch this nightmare we call our life. My brother in law lives with us so I can continue to work but If I could I rather not be gone for days at a time to come home to see the changes.

It is so very hard for you and everyone who has children at home. My heart truly breaks for you. I also know that we do not know when their time will be up so we just have to dig as deep as we can and tap into our inner strength, in order to make it through. We are only given one blessing in all of this, as far as I am concerned and it is to spend as much time as we can with them. We are given each day to love them and to care for them. In the end ALS may take everything else but it does not take our love for our partner. It seems that the emotional and physical toll that it take's on their loved ones is unbearable but we will wake tomorrow and do our best all over again.

Take care of yourself, your children and know that there are so many of us here for you if you need us. I will pray for you and your family tonight and want to thank you for being strong enough to post your fears. It truly came at the right moment for me. I just wish I could hug you and comfort you.
 
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affected

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It's so hard watching them being taken away a teaspoon at a time.

You have a hoist for transferring him? A gait belt is not a good solution.

He could still plateau and of course it's the breathing that counts most so far as the end coming, many PALS live in wheelchairs for years being hoisted. But poor swallowing makes him susceptible to an aspiration pneumonia which is an awful thing to go through too. We can't predict how long they have, we can just give them as much comfort and dignity as possible each day.

We all live with some hope, but sadly we know that even if they found a cure today, no cure will reverse the dead motor neurones that our current PALS have, but we can hope in truth for the next generation to have a cure so they won't go through what we have.

You are doing an amazing job, especially with small children to care for. {{{hugs}}}
 

lgelb

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Tracy, if his legs are buckling with a gait belt, it's time for an electric lift. As for his breathing, is he comfortable when on BiPAP (I seem to remember mask issues). If so, he could have a considerable time left.

I wouldn't "sit and wait" hoping for a cure. I would live every day to its own fullest extent (it's not realistic to say you'll enjoy every day equally). As you say, you do not know what time is left, so why not do the most with what there is? As for eating, is he eating blenderized food? Does he plan to get a PEG?
 

Aussiemndcarer

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Tracy, I send my thoughts to you from across the miles. I am feeling so very much like " how much can this disease take?"
My Pals has had early onset breathing problems for so long now...I am scared every day....but he does not have any trouble eating or talking. He has no strength left at all to put any weight on his legs either. We use a hoist , & it nearly seems that I am using it all day long.i use it for toile ting,changing clothes, in bed,out of bed , & each time we have to transfer to bed,new " slippery. " clothes are required so my PALS can turn. ( that is difficult now too). He cannot feed himself either. I am always wondering when I go to sleep ,what tomorrow will rob us of ? Sometimes I have to pinch myself to prove that this is happening to us. All I can say is stay strong, and lets hope that the researchers are getting closer! This disease seems to take so many different pathways.
 

Tracy500

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We have a hoyer lift but not electric. I need to move it to the bedroom but that means moving my bed out of the room as well and sleeping on the couch. He doesn't want my bed out but I said there is no room for the chair hoyer and all equipment. We moved up to 2 cans of formula a day but he still makes me feed him food. He isn't supp to eat anything by mouth at all. But he is stubborn. He has been being mean to me again so it makes it difficult to deal with him daily. My life is so crappy lately, I feel I'm robbing my kids by not spending much time with them, but we don't have outside help, and can't afford hired help either.
 

lgelb

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Tracy,
The Hoyer can be stored in any room. If space is an issue, consider a folding one (and you really should have a power lift -- have you asked your ALSA chapter re a loaner?)
 
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