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Day by day

Member
Joined
Aug 6, 2015
Messages
14
Reason
Lost a loved one
Diagnosis
11/2014
Country
CA
State
ontario
City
London
i know that it's impossible to,know how long someone has but I wish I had a crystal ball. My love was diagnosed last November. He was walking with a walker until about April when he began a quick decline. He can no longer walk, although he can still weight bear. His hands are flaccid and can't grip anymore, his speech is almost unintelligible, and he has lost so much weight- I would guess 30 or 40 pounds. He's not hungry, ever. He is a smoker and can no longer hold his own cigarette, it's increasingly difficult for him to draw on it. Although he doesn't use any machines, he is having such a hard time anymore clearing his lungs. He chokes easily on his fluids, and no longer eats any solids.
We have applied for long term care as I work full time and I am at my breaking point. But if I only knew how long he had, maybe I would keep,him at home and get through it!
I am new to all of this- can anyone give me any advice?
 
That's not a question anyone can answer. If if you're thinking of taking time off, the government just increased the compassionate leave from 6 weeks to 26 weeks. You don't have to take it all at once. It's not a lot of money, but every little bit helps. Long term care has huge waiting lists. Have you tried to get home care? This is not a disease to take on alone.
Vincent
 
Be prepared. You must always try to be several steps ahead of the disease. Before you think you need a hospital bed, get it. Before you need a cough assist machine, get one.

If you haven't already, it's past time to have made final arrangements.

It makes sense to say that there's no way to predict life expectancy. But I'll go against convention and tell you that I think your PALS is progressing quickly. His timeline sounds a little somewhat comparable to my PALS. My wife lived 9 months from first symptom.
 
I guess you know that smoking is even less healthy in ALS -- but I would get him a BiPAP. And, if he wants it, a feeding tube. Or has he refused those?

Without them, and given what you describe, I agree with Mike you are most likely looking at months rather than years.
 
Thank you everyone for your replies. I know that smoking is not healthy- he had quit until he got sick. I'm not a smoker but I can't fault him for trying to find some comfort- smokers tell me that it's a stress reliever for them.
We do have some home care- it's taking two of them to get him up, and two to shower so I am extremely grateful for them.
However the last visit is two o'clock and I'm on my own after that.
Nights are horrendous- he needs repositioning every hour.
I agree that with the way things are progressing he doesn't have long. He is only 42 so it seems unbelievable.
 
you definitely need more help. It sounds quick to me as well, but you never know. terrible to hear that he is so young--do you guys have kids? any other family that may help care for him. you do not want to wear yourself out doing all the care--you need help now for the end will be even more tough. If you could get in a day nurse that stays with him for 6 hours, and even a night nurse one or two nights a week so you can sleep that would help relieve the stress on you.
 
My Chris smoked right through.
I agree, not healthy, but was he going to give up cigarettes at a same time he lost the ability to talk, swallow, use his hands and walk? I think not.

I made some contraptions to help him, and we bought a cigarette holder. He could clamp his teeth on it and hold the cigarette in his mouth as he couldn't lift his arms up and down. Yep he dropped them in his lap more often as time went on and all his clothes had holes in them. He smoked less as he needed help, but he found comfort from it.

Do you have equipment like a hoist, electric bed and alternating mattress? There are even ones that will turn them through the night which it sounds like you may need.
 
I'm already so glad I found this forum- it's so nice to talk to others that know exactly what we are going through. When I hear people sigh that they didn't get to bed until midnight and they are so tired, I just shake my head.
Unfortunately we have no family close by so, with the exception of some great friends, we are on our own. I am so thankful for the psws who come in daily, but it's after they are gone that it becomes so hard. He has trouble clearing his lungs and always wants to stand to try and get a deep breath. So between the two of us, he stands as best he can but its really an accident waiting to happen. My back hurts, my knees hurt, my shoulders hurt, and my heart hurts. We have a hospital bed on its way and an air mattress too so I'm very hopeful that things will get a bit easier.
How does everyone deal with the fear their PAL has about what is still to,come- mine has not come to terms with his impending death and sobs some days. It's so hard to comfort him- I don't know what to say to make it any easier. This is a horrible disease and I wouldn't wish it on my worst enemy.
I've gone from praying for a recovery to praying that God will take him quickly and peacefully.
 
Day by Day, I feel for you! Are you repositioning him because of choking and breathing difficulties? My husband's last two weeks were terrible at night, he could not get comfortable and ended up "sleeping" sitting up on our sofa (when he wasn't up choking). We tried umpteen pillows on the bed but to no avail, and it was SO hard trying to position him. I understand that helpless feeling as a caregiver.......Tom suffered at the end and there was absolutely nothing I could do to help. I tried my best to comfort him with my words. And yes, my prayers went from praying for slow progression to praying for him to pass peacefully in his sleep. My prayers were answered, not quite "peacefully in his sleep", but definitely peacefully under the deep sleep of very necessary morphine in the hospital. Your husband sounds like he doesn't have a lot of time left, especially if he doesn't have the help of any breathing equipment. God bless you and your husband, so young! Stories like yours sadden me.
 
Day by Day, I am so sorry about all that is happeneing so fast in your hubby's case. Do you have a hospital bed? Elevating the upperbody will make him a little comfortable and breathe a little easier. That might keep him from waking up so often and need to be re-positioned.
 
I will say that what finally got Chris sleeping was when he agreed to go on Endep which is an antidepressant. He only accepted it when he was told it may help him sleep ... It did! He would also take a very small dose of Oxynorm (like morphine) at night, but the Endep made a big difference and it took his rages down to more of a sulkiness.

It's really hard, none of us will sugar coat that one. But somehow we all keep adjusting and adapting and coping as best we can.

For me accepting the terminal nature of the illness helped me to cope personally. I don't think it helped Chris to cope, but it allowed me to focus purely on comfort, dignity and loving him.
 
my husband got on anti depressants and they helped him tremendously. He didn't even realize how heart broken and sad he was, until he started feeling better. I know they also helped me a lot as well.
 
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