Sleeps so much

RNS

My 88 year old DH, who I believe is into stage 6, is sleeping 18-20 hrs a day.  He doesn't ever leave his chair except to use bathroom.  I know to many of you this would be a blessing. I know how fortunate I am by reading what you go thru on a daily basis.  He eats very little except sweets and ice cream.  He is diabetic, has a pacemaker and is almost nonverbal.  He can speak, he just doesn't.  His vitals are all good and we have Palliative care visiting once a month.  He also insists there is nothing wrong with him.  He has anosognosia.  I have given up trying to get him to eat healthy, shower, walk, talk, etc. That is the only time he becomes agitated and upset. I keep him safe and administer all his medication. I have given all this history because I can't help thinking he may be further into the disease than I recognize.  I literally do EVERYTHING for him.  So basically all he has to do is sleep.  I keep wondering ( and wishing if you will) if this can't possibly end soon.  I feel myself swirling into a deep and dark hole  I have one activity that I am able to do but the knowledge of what is at home puts a damper on it.  I have 4 hours of in home care a week.  I think I need  A LOT  more hours of help or I'm going to reach a point of no return. I hope this doesn't sound like a "poor me" post.  My purpose is not for sympathy.  I'm not sure what the purpose of the post is, except to put into words the loneliness and despair I feel every darn* day.

Battlebuddy

   I’m so so sorry you are going thru this. I’m glad you posted about your struggles. It’s not a pity party and you are not complaining. You are just telling like it is for you right now. 

   If I was guessing which stage you are in, I  would say late stage 6. But it seems like you are getting close to 7.  Stage six was the hardest stage for us. There is a big shift that goes on both mentally and physically - both for your LO and for you. Things wind down ( that seems to be what you are describing here with the sleeping, not speaking etc) It’s something that is hard to watch and accept. They begin to hit a less mobile stage. They begin to live more of an internal inward life. They begin to cocoon in the bed sleeping many hours. If you haven’t read Teepa Snows Gem stages look them up. It’s interesting the way she frames it. 

   I’m not sure if this is at all helpful. Basically told you what you already know. But just know that I think this is a tough spot- a tough turn your making. My heart goes out to you. It sounds like you need more support and help. No one should have to end up in a black hole. I hope you can get that support 

toolbeltexpert

Here is a link to the teepa snow pearl stage. It isn't the complete gem video but it maybe helpful 

https://teepasnow.com/blog/imagine-living-life-in-a-pearl-state/

Below is a link to the gem video these are very helpful

https://www.google.com/url?sa=t&source=web&rct=j&url=https://m.youtube.com/watch?v=Z6UVjp_y8HY&ved=2ahUKEwiu1vKKqI33AhU0rmoFHZvdCVcQwqsBegQIBRAB&usg=AOvVaw3MSoSENjOaML4ffvSS_jau

Joydean

RNS, I’m so sorry, as Battlebuddy said, no one should be in a dark hole. You definitely need more help and I hope are will get it soon. Four hours a month, even a week is not enough. You and your DH are in my prayers. I do hope you get some help soon! 

sandwichone123

Sometimes it's possible to get the pacemaker turned off. Some people find this idea terrible, and feel that failing to keep someone medically alive is tantamount to murder, but others feel that keeping someone going artificially is abuse. I can't answer that.

You may be interested in Katy Butler's book "The Art of Dying Well," which has helped me gather my thoughts on the subject.

Marie58

RNS, I'm sorry this is so hard. My 66 year old DH is also stage 7 and I, too, wonder how long it can go on. I pray every day for Jesus to take him home sooner rather than later. I agree that you need more help. You're doing a great job caring for him, but that dark hole is real, and awful to be in. Believe me, I know. Saying prayers that you can get more help and have some relief. Blessings to you and DH.

Lynne D

RNS, never apologize for sharing what is on your mind. 

You are trapped in your own home, and even as “easy” as your loved one may be, you are missing out on some critical aspects of a meaningful and happy life.

Perhaps you could contact your local Area Agency on Aging. In my state they were able to provide three hours of respite care per week via a grant, miraculously in a rural area.

I think it is am important step that you recognize what you need to save yourself. We are all rooting for you!