End stage is so hard

Marie58

And it seems to go on and on. DH is end stage of Alz, but not actively dying. This has been going on since Nov. He is 66 and was diagnosed 6 years ago. His decline was fast. He was relatively young and healthy so I feared he'd get to this end stage rather than die of something else. So here we are. 

He's been in MC two years and two days.

I'm really struggling watching him at this stage. He's 100% reliant on others for everything. He's bedbound, hand fed, non verbal, leaning to the left, losing a lot of weight, sleeping a lot, possibly in pain although he gets morphine and other drugs, expressionless although sometimes I think he looks sad. 

His vitals are always good. He's on hospice so a nurse sees him at least once per week. She told me he probably has months but she's not sure if that means 2 or 12. Sometimes I think I shouldn't visit as much because it's killing me to see him 'live' like this. But then I want to visit because I know his time could be short. And I love him so much that I want to be with him. I try not to cry when I'm there but sometimes I can't help it. When I put lotion on his legs, that's the worst. I lift his legs and his calves are so skinny. He was always so strong and had muscular calves from running, hiking, biking, skiing. 

I pray God will have mercy on him and take him home. We're both Christians and I know he'll go to Heaven. My faith gets me through this, but it is still so, so hard. The Bible tells us not to fear, but if I'm honest, I fear this will continue to go on and on as I know it can. 

Sorry if I'm rambling. I know you all understand and I appreciate you all. I hate this disease.

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clndaniels

I am so sorry you and DH are going through this. I have experienced the heartbreaking end stage with my MIL and SIL and now my 77 year old DH is progressing into stage 6 so I know it will come again. He is at home now with myself and week, but is still exhausting. My prayers for both of you.

Hoot619

Marie , I will keep you and your husband in my prayers. I hope your prayers will be answered soon. This disease takes so much from both loved one and caregiver. Hoot

abc123

Dear Marie, I can relate to what you are saying and feeling. My mother died on the morning of July 23rd. Six months of being 100% dependent. Hand feeding her baby food with a baby spoon was very hard for me but I realized it brought us closer. It made me think of when the roles were reversed and she cared for me because I was 100% dependent on her. I realize this doesn't apply to you because you are caring for your husband BUT there are some things that we do share. My parents and I are also Christian believers and I found a great peace in knowing that God Almighty had that covered.

Our hospice nurse told us the same thing, it could be two months, it could be twelve months. The nurse reminded us that momma's death would be between her and God. It had absolutely nothing to do with us. I firmly believe that to be true. 

Like your husband, momma lost a great amount of weight. It got to a point where she was losing weight daily. Her vital signs were always good. The night before she died her vitals were still good. She was not actively dying at that point. Her breathing had changed, not drastic just different. The nurses/sitters changed shifts at 8am. She died at 8;34 am and I was holding her hand. Please forgive me for rambling on, I just want you to know I understand all the feelings you are dealing with. I have discovered that I am now grieving for the person she was throughout all the stages of this terrible disease. 

Just so you know, I cried several times at her bedside. I just couldn't keep it all in. Please keep posting and let us know how you are doing.

Crushed

Marie58 wrote:

He's been in MC two years and two days.

I'm really struggling watching him at this stage. He's 100% reliant on others for everything. He's bedbound, hand fed, non verbal, leaning to the left, losing a lot of weight, sleeping a lot, possibly in pain although he gets morphine and other drugs, expressionless although sometimes I think he looks sad
. 

DW has been at this stage for 2 years

one thought the leaning to the left can be PISA syndrome Its drug related

Leaning Tower of Pisa syndrome

Background. Pisa syndrome (PS) is characterized by an abnormally sustained posture, with flexion of the body and head to one side and slight rotation of the trunk. Although PS most commonly arises as an adverse effect of antipsychotic drugs, choline-esterase inhibitors (ChEIs) are also sometimes known to induce PS.May 13, 2020

  

losing weight is due to not being fed enough   try ice cream

 

 
  

Beachfan

Marie,

I am right behind you; in your shadow.  DH has only been in MC for 10 months, and although he is not bedbound, much of his "waking" hours are spent sitting quietly with eyes closed.  (Before placement I often wondered how long DH would stay in bed if I allowed him.)  He is also hand fed, eats like a wolf and doesn't seem to be losing weight.  The caregivers dote on him, feeding him extra portions and special treats in the evening.  It's hard to watch him fade away before my very eyes and his not knowing me makes it sadder still.  I understand your situation and I am so sorry for you.  

JudyMorrowMaloney

Hi Marie,

I was glad to read that you and your DH are both Christians.  As the bible teaches, Christians don't grieve like others who have no hope.  I too am a Christian and so is my DH.  He has FTD and is in the latter stages but not yet actively dying.  It takes sooo long and I often wonder why God has allowed him to linger.  I too pray that God will be merciful and not allow him to suffer longer than he has too.  This is a terrible disease!  I have to remember that God knows what  is best and has something better for both our DHs.

Ed1937

"Sometimes I think I shouldn't visit as much because it's killing me to see him 'live' like this. But then I want to visit because I know his time could be short. And I love him so much that I want to be with him."

I'm sorry it is so devastatingly hard. I wish you strength and peace in the coming days.

David J

Marie,

I know what it is like to watch your spouse wither away. My wife lost half her weight and was literally skin and bones.  It hurt to see her like that.

One thing I have tried to do through this entire ordeal is to be happy for what we have on each day.  Clothes on backwards? It’s great that she is dressing herself.  Jumbling her words?  It’s great that she can still communicate.  Of course it got harder at the end. For the year she was in the MCF, she walked around the facility all day and sometimes all night, until she would collapse in exhaustion.  I was happy she wasn’t bed bound. The day she couldn’t get out of bed was the day she started to die, and three days later she was dead. She was 67 years old.

Although I miss her terribly, I am happy that she is not suffering anymore. Strangely, I’m glad she didn’t have to deal with this disease as an old woman.  I’m glad I was there to see her through it. Caring for her was an honor.

You still have your husband, and he still needs you.  From your description, he is still taking nourishment by mouth, and both have your faith. You get to see him as often as you want. There is always something to be thankful for.

Dave

LilySue

I could just write "ditto" under your post. My DH is in exactly this situation, and every day i wonder if it will be his last. He has been 100% dependent for many years since a stroke ten years ago. He is at home with live-in caregivers. Who ever thought life would end like this?

Marie58

Thanks for the replies/support everyone. Tuesday was one of the hardest days of this journey. I just wept so hard after seeing him. I didn't visit Wednesday, the day of my OP, and I felt better. I visited yesterday and again, it was so hard. 

I honestly think I need to visit less for my own sanity and peace of mind. He's never 'out of sight, out of mind'. I'm sure he will always be on my mind and in my heart, even once he's gone. I talked with my mom about this and she also said I should visit less. I guess I should listen to my mother!!

Joydean

Marie I’m so sorry you and your husband are going through this. God will answer your prayers, but in His time not ours. I believe this but I also struggle with it. Prayers for you and your family! 

fayth

Thank you for this post.  It has resonated with me because I'm in much the same position.  My husband is 68 years old and is in very late stage.  We've had hospice services for two years now and he's been in MC for 6 months.  He hasn't walked in two years, he's lost a tremendous amount of weight and muscle mass, he's not verbal and no longer makes eye contact.  His body is very rigid and he leans to one side.  His vitals are 'good' though his nurse said this pulse is slowly getting weaker.  His skin is weaker and is developing some significant pressure sores, especially on his feet.  Of course he must be fed, but he can chew and swallow. 

I see him nearly daily.  It is hard to visit, for all the reasons you said, but it is hard not to be there, too.  I desperately want this ordeal to end, but I'll be heartbroken when it does.  We have been together since we were in our early 20's and we were so fortunate to have had many many good years.  I want this to end so that I can remember the comfort and joy that we brought to each other.

Thanks to everyone for sharing their wisdom and experiences.   It really makes a difference.