Which is worse Living or Dying

[SLAUGHTER1555]

Hi CALS and PALS its been a While since I've been on the forum and alot has happened. Its been a lil over a year since my husband's Dx and the stress of caring for him has been enormous. I wont even begin to about the Finacial stress we have endured. And medicare OMGOODNESS absolutely horrible!!! Don't pay for nothing worth nothing.

So we're at the placement of a nursing home portion of ALS. I can not physically emotionally or mentally care for him anymore. So he has been in hospice awaiting placement but were waiting on the state to give him Medicaid and they have up to 30 days to decide smh.

My PALS moans and growns all the time, he is cold all the time with chills. I called the doc about the chills cuz they happen all the time. He has bladder spasms so bad he uses it pass the foley smh meds are not helping so guess this is something we have to deal with.

He is so miserable he looks like he is in agony all the time smh its like he has to live like this for how long!!!! Lord which is worse living or dying!!! I must admit i have wished the lord would take him then i repent for saying that. But it hurts so bad to watch him this way lord have mercy!!!

I am unbelievably tired exhausted that i fell asleep sitting with him yesterday smh. I wish this placement thing come thru quickly maybe it will be a lil better cuz the staff in hospice are not really equipt to care for him in his condition.

Well thanks for reading my rant its been awhile.

 

[JennyC]

Please don't feel badly for praying that he would pass, I pray the same thing for my mom. We pray this not out of selfishness although if we get real the relief of the exhaustion would be nice but no where near worth the loss....mostly we pray it out of mercy. I think it is a completely normal thing, please don't feel guilty about it.

 

[KimT]

You need to call hospice immediately. He should not be suffering. He should be on morphine if he is in that kind of shape. Talk to your hospice nurse.

 

[Atsugi]

I know now that my PALS' rapid passing was the best thing for all of us. Of course, we hoped for a long, healthy existence, but what are the odds of that? A long suffering would have even more demoralizing to her, would have affected our kids' GPA, and, quite frankly, I was never raised to be a supportive or nurturing person.

Krissy did well. In her life she raised our kids to perfection, and kept me from living a drinking, whoring existence and dying in my own puke in a ditch in a Third World country. (I always told her that was my future, if it weren't for meeting her.)

 

[SKlocinski]

My husband passed away July 21st. For the last couple of months he was so fatigued that he could barely move although he actually did not have any limbs that were paralyzed. I, too, sometimes wished for him to go as I knew that he had no life and that he felt really bad. Of course, now that he is gone, I do feel guilty about thinking that, yet I would not want him to come back in that shape. I alternate between relief that he is no longer suffering and guilt at wishing for an end. I struggle daily to try and be happy for him that he is now free of ALS. Try not to feel guilty. It will not do either of you any good.

 

[gooseberry]

I think it is pretty normal to feel this way. I did too. When you see someone you love struggling with this disease, it totally drains you and stresses you. Eating good food, sleeping are out the window and the anxiety spikes. Cut yourself a break.....this disease really stinks for all involved.

 

[GilWest]

Mom's palliative care has been wonderful, but she is bedridden and there is no transferring as she stays in bed all the time on the vent. I would exhaust every option before considering nursing home care as most are not in any way equipped to really care for MND. I had to visit every single day, and it was basically like caring for her 24/7. Could you hire a private duty aide and pay privately?

 

[scaredwifetx]

You shouldn't feel bad for the thoughts you are having. Its so hard to watch our PALS dealing with this disease at times. I hope both of you can get the help you need and deserve so you can spend some quality time together.

 

[Jhill]

I think we have all felt that way at one time or another.
The exhaustion, stress & anxiety is overwhelming at times.
Do not feel bad over any choices you have to make.
Hugs
Joan

 

[SLAUGHTER1555]

Thx its nice to know im not the onky one ro have thought this way. I tey not to feel bad but then im like see saying that about him it could be you smh then i really feel bad.

 

[SLAUGHTER1555]

Thx every one for your kind words and experiences i dont feel so abnormal now.

So my PALS is in hospice as an impatient waiting to be placed in a care facility. Before arriving to this point i have done everything humanely possible to care for him and keep him home. I have hurt my back so many times i lost count my fingers feey and hands are so strained to the point i can barely hold a pencil.
We only have disability money so private care yeah right. i can no longer care for him at home. He keeps getting UTI which is what sent him to hospice in acute care. Now today his leg is so swollen it hurts. Our Neuro doc thinks it might be a blood clot so he is going ro the hospital to get a doppler of his leg.

It has been one thing after the other there was no way i could manage all that from home. Btw and my 12yr just started school. At this point with all Thats going on we need a care facility.

There is one care facility that specialize in Neuro diseases here and Thats where were trying to get him.

Its been awhile since ive been in here so i have forgotten how to respond ro each post plz forgive me and i hope i responded to each one in this long post.

 

[SLAUGHTER1555]

Question is blood clots associated with ALS? My moans alot and grunts all day even when he's sleep. Is this part of ALS too? I ask constantly is he ok is he hurting he says no. I feel so helpless watching him smh anyways won't start my sad song again.

 

[Nuts]

Welcome back, Slaughter. I'm sorry things have been so hard, and I'm glad you came back to talk with us.

Yes, blood clots are associated with ALS because of lack of movement. Moaning and grunting if he says he has no pain--perhaps a sign of depression?

What a miserable time you are all having. I'm amazed that hospice hasn't given him morphine for his pain and discomfort.

Becky

 

[preacherman]

For I calculate that the sufferings of the present time are not worthy to compare to the coming glory to be revealed in us.

 

[patoyeah]

Question is blood clots associated with ALS? My moans alot and grunts all day even when he's sleep. Is this part of ALS too? I ask constantly is he ok is he hurting he says no. I feel so helpless watching him smh anyways won't start my sad song again.

I make odd noises consistently without being in pain. It usually difficulty breathing and / or choking on mucus.

Can he communicate?

Morning,
pat