Praying for this to end

Dear Wag91, I pray for an end every day, and my DH is only in late stage 5. Every day he looks so sad and doesn't want to do anything but watch TV. I am getting more depressed and losing hope every day that my life is just going to be as a caretaker till I die. I am so tired of this for him and I. As M1 said, it is asking for mercy.

I feel the same way. I hate this disease.

You love your husband and you don't want him to suffer. I honestly hope something else takes my wife before she suffers through stages 6 & 7.

It’s not wrong. My daughter and I talk about how it would be more merciful on all if something other than this dreaded disease is his demise. I think it shows your love for him that you don’t want him to suffer more.

My DW has the Semantic Variant of PPA FTD. She is in Stage 7, sleeps at least 20+ hours and is only semi awake the remaining few hours. She keeps her eyes closed all but a few minutes now and then. She is bed and wheelchair bound and on hospice. She is basically non-communicative, with only very brief incoherent speech. But she is only 72 and has no other co-morbidities, so she is on her way to dying by dementia.

My DW would hate being like this, she commented as such not long after I met her 50+ years ago, she was afraid of living in a severely debilitated state late in life. She had no idea then just how bad it was actually going to get for her.

I often think that she would not want to live like this another day if she had her way. I want it to be over as well, but I can do nothing but sit and watch her relentless decline and mourn for us both. I believe it is morally justified to want the misery of our loved ones to end when “they” have gone, but their bodies linger on.

I’m experiencing stage 7 also, mostly since early September when she developed a clot in her leg. Anticoagulants seem to have taken care of that (swelling is gone), but she hasn’t walked since then and doesn’t talk or even respond with nods or shaking of her head. Just stares. She seems to pump up when our son or I am there, or at least that’s what the staff at MC say. She still drinks lots of fluids but with the exception of desserts doesn’t eat much. In the past we’d talked about when the quality of life had declined enough that it would be time to go. We’re past that point now. Yet I somehow still get frustrated when I feel she might be getting better care, although it’s ok. She’s comfortable, not in pain, not on any meds. Lately I’ve considered moving her back home. But it’s heartbreaking and painful, even, just watching this a few hours on most days. I don’t think I can do it 24/7 anymore. The journey just continues, for how long I just don’t know. Even though I have the freedom to start preparing to move on I still can’t find the motivation.

I think I wish it were over also. But I’m starting to be curious about how I’ll feel when it is over.

My family prays for a quick and compassionate exit.

You are reaching right to the heart of many of us. I look at my husband of 38 (very difficult) years) and pray that he is set free from all this. He is Stage. 6.75, but is deteriorating rapidly, probably due to massive meds to keep him calm. I want what is best for him and that is always my first concern, but I have to have the strength to take care of him. Joseph Campbell said that life was a perfect mosaic where every moving part did so in perfection, that if we could grasp that we would be able to approach peace. I am trying to see it this way, but it requires building emotional "muscle". I guess all we can do is try our best to believe that it's going to work out in the end.

@RickM "But I’m starting to be curious about how I’ll feel when it is over." I can tell you what it's been like for me. Like everyone else, I wanted it to end before my wife rode this disease to the end. She was stage 6 when she had a gastrointestinal bleed, and passed on. I was, and still am thankful that she didn't have to endure stage 7. Her passing was the best thing for her, but the worst thing for me. It's now 20 months since she passed, and I am finally finding some minor enjoyments in life. But it's not the same as it once was. Finding my new life was much harder than caregiving for me. I could go to bed when I wanted, got up when I wanted, and ate when and what I wanted. I was miserable.