So I’ve already written in how my dad’s decline had floored me. The last few weeks I’ve cried a little every day, watching him struggle for each breath, staring at the darn oximeter like it’s a Magic 8 ball and not putting the pieces together himself. He’s on 4 liters so not maxed out on the home unit but every little thing takes his energy: brushing teeth, putting on his clothes, standing up. I know he’s been trying because I’ve asked him to (but not demanded and if he said he couldn’t try I’d have already had this discussion) but a few days ago I asked him what is taking the most energy and he said walking to the living room. I asked him does he still want to get out of bed and do things and he said yes but he’s just so tired and everything takes up his energy. He has been using a walker since June 3, but had developed muscle shakes in his arms and legs, what he calls “fumble-itis”. I’ve been there for every little step, helping him dress, go to the bathroom, doing body wipes for bathing etc; he goes nowhere alone and I leave him at whatever place (toilet, sink or desk) no more than a few minutes at a time as he’s a major fall risk now. Only in bed and falling asleep can my eyes leave him for awhile; I’ve a baby monitor in my room so I can hear him at night and he has two phones (cell and landline) by his bed to call me even if he can’t speak much at this point I told him just call me and I’ll answer and tell you I’m coming. He’s having hallucinations about all sorts of things but can still be talked around them and soon forgets he had them. He sleeps over 16 hours in a day: goes to bed at around 10-10:30p, up at 9-9:30, eats a little breakfast (like cupped palm of your hand little), goes back to sleep generally by 11 & sleeps until anywhere from 3-5pm, stays up if he can but usually has another 45-60 min nap in his chair around 7, a small dinner then back to bed for the night.

Anyway, I said I’d start using a wheelchair to transport him wherever in the house & in and out of the dialysis center. I had spoken with his PCP on Tuesday and she said he’s definitely having end of life signs and referred me to a hospice company. I’ve spoken to two of them and chose the one that made me feel like they would care for him better. Now the thing is telling him. I saw in his eyes and body today he’s troubled by his not getting better despite medication for his main problem of COPD and that his BP isn’t improving but his heart is very strong per his cardiologist. He’s trying to sort it out but he can’t see it. I need to tell him tomorrow that he’s going to have his last dialysis on Tuesday and that he won’t have to struggle to get up and out of bed and do things. With him, it’s not real until it’s said aloud so I have tried to keep steady in routine and not press logic on him and just let him go on his own pace. I’ve told him several times it’s not his dialysis not working or his heart that is the reason he’s not getting better but he just can’t connect the dots.

How do I tell him that his struggle is done with? He already knows that family has been coming to see him because his health is failing but they aren’t helping by telling him he looks great and to ‘get well soon’. I know I’ve been skirting the issue but at least I’ve not told him to get better. He’s not in any pain, thank the Heavenly Hosts, but I don’t want him to suffer an extreme like a heart attack or aneurysm from all the effort. He’s not comfortable and his comfort and peace are my responsibility. Please help.

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Do you think he could be content with being told that his doctors had suggested that he move to a care site that was dedicated to keeping him comfortable so that he could rest more easily?

Do you think he’d be frightened of the word “hospice”? If so, I’d avoid mentioning it, and point out instead the advantages of round the clock help and instant response to his uncomfortable symptoms.

Peace and comfort. See what the hospice personnel think also. They may likely have what you can be doing as preliminaries to his arrival there.

Blessings and comfort to you both.
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Reply to AnnReid
AKdaughter77 Jul 2, 2021
Actually it will be in home hospice so that doesn’t work. His primary care doesn’t think it’s mentally healthy for him to be moved to a strange environment and would just lead to his confusion not comfort. I don’t think he’d be frightened just that it’s a statement that there’s nothing else to help him and that he’s got nothing left. He’s never been a man to give up and as a man that’s always hard to do. And it could be there’s things he isn’t telling me, like maybe he’s wanting to be more secure about what’s going to happen with me and my partner besides me telling him I’ll be fine. He never got to see any of his daughters get married and we did talk once of him being able to walk me down the aisle.
If he wasn’t so very aware of his life and zoned out on medication, I might’ve moved him in somewhere but then there’d also be out of pocket expenses for room and board since Medicare won’t pay for that and he has too much retirement income for Medicaid. Besides that, as his POA, it was already written and agreed he’d have in home hospice unless absolutely necessary for his health and well being to transfer him outside of home. As that’s not the case, he gets to be in a familiar place and see his things around him until the end. Thank you for writing me. I hope all is well in your life as a carer today. Blessings to you and your family.
I was right where you are a year ago at this time. Had all those family visits. I’m sorry you both are going through this struggle. Please let either dad's doctor or the hospice nurse discuss this with him. Though my dad chose hospice for himself, there were still times of denial and hardship accepting it. The hospice nurses handled it beautifully, I could never have had those particular conversations with him. I focused on topics he wanted to discuss, old memories mostly. We both knew the end was coming, and it was peaceful and comfortable for him. I wish you both peace
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Reply to Daughterof1930
NeedHelpWithMom Jul 2, 2021
My dad knew when he was dying too. Oh my gosh, he apologized to me for everything that he thought he did wrong. It broke my heart but it was important to him to say what he had to I quietly listened.

Mom knew her time was near when she entered hospice. It’s so sad. I think people can sense, maybe even choose the day they die.
I agree with Daughter’s posting. Let the nurse speak with him about hospice. My brother told my mom. She cried. My brother cried. Mom actually said that she had been praying for a comfortable way to die, such as with hospice care.

You won’t be sorry that he is in hospice. The caregiver team will be compassionate. They are angels!

Wishing you peace during this difficult time in your life. Many hugs!
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Reply to NeedHelpWithMom

If you think the term hospice will upset him, don't focus on the "hospice" part of it, but rather on the "we're trying something different to make you feel more comfortable" angle.

He may surprise you if you tell him the new focus of his care is quality of life, especially when he realizes he won't have to rouse himself to go to dialysis anymore.

Hospice really is about quality of life, and not having to try so hard to get well when it isn't possible is a huge load off everyone's shoulders, including yours.
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Reply to MJ1929

Thank you to all replies thus far. I haven’t been able to sleep. I just feel like him hearing it from me is the right thing because he knows me and trusts I wouldn’t lie to him. But perhaps you’re right that his doctor should tell him instead. He does trust her but then he could also ask me too after and then I could agree vs me telling him first then him asking her. I feel so sick and lost and trying to hold on to my grace just a bit longer for him is painful. I can’t look at him without wanting to burst into tears and tell him everything. I guess it’s fortunate that he doesn’t look directly at me anymore unless I ask him to. I’ve got an absentee sister flying in today and a similar brother flying in tomorrow. They are staying elsewhere due to their non-mask beliefs & aren’t vaccinated I don’t think and only for three and four days respectively. They know they can’t visit w him long and must be masked all the time around him except to show him their faces so he knows it’s them.
There is so much to still do as far as planning for his memorial service but my brain just can’t think straight with all the sleep I’m not getting. I know I need help w it but I’m barely functional to ask anyone. My partner will take time off to help me but he’s ill-prepared to help in those matters and I’ll probably end up asking his mom since she lost her mom two years ago.
I just want to stay in bed and cry and it doesn’t help my monthly has started too. Sorry if that’s TMI but it’s true. Life doesn’t stop because of death.
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Reply to AKdaughter77

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