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We moved Dad who has COPD and related moderate cognitive impairment to a SNF in September on hospice. He is stable and declining sooooo slowly. His memory has lapses that are frustrating because we (the daughters) have been seeing them for years, but he performs for docs and nurses. We cannot get him diagnosed with dementia, so he is able to make his own decisions... but he doesn't make them in his own best interest... refuses treatments and medications that would help him breathe better. He also has said to us repeatedly that he is ready for "the good Lord to call me home." His quality of life is terrible. He cannot see well, cannot hear well, cannot breathe well, cannot walk unassisted, and is lonely, being isolated in a snf where covid restrictions won't allow visitors (not that he remembers having a visitor 10 minutes after they leave). Hospice won't allow his lasix for swelling in his legs because he has low BP already and they don't want him to "bottom out." But he is ready to die... and finds his swollen legs and feet uncomfortable... but won't take other meds like morphine ... or ativan for anxiety... he is his own worst enemy for refusing things that would give him more comfort... and all we can do is watch... as he almost imperceptibly declines... dying in slow motion. Suggestions?

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A good hospice/palliative care nurse should be able to have the discussion with him about what it means to him to have a good death and how to make a plan to help him achieve that, I would work with your hospice provider to try to find that person.
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Reply to cwillie
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This is very stressful for you and your sister(s).

Yes, all you can do is watch. Though actually you can't even do that, can you, if you're not allowed into the SNF?

How is your relationship with the staff who are looking after him? If it's good, or you can work on making it so, I think you might find it helpful to see them as a buffer between you and your father's decisions. They will - or at least I would expect them to - continue to offer him symptom relief as and when he seems to need it; and if he continues to refuse it, that has to be accepted.

His quality of life must indeed seem absolutely dreadful to you, but let the staff monitor and tell you how he is. If he's not in pain and not afraid, it's going well; and if anything changes at least you know he still has those options.

Try not to let your frustrations about being unable to get a dementia diagnosis fret you. Looked at another way, it does save you some agonising choices further down the road.

You know, there is no reason why you shouldn't ask him in a non-confrontational way why he is refusing medications. It's just possible that he has misunderstood something about them and you'll be able to ask his team to set his mind at rest on that point; but don't stress him out about it.
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Reply to Countrymouse
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You should also talk to the hospice social worker about how this is impacting you as well as other family members. Hospice is there for you too and they can help. Also, they will have a chaplain who can spend some time with you. This is a difficult time but what is happening is natural and part of life. Touch base with those hospice professionals and share your worries with them.
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Reply to AlanBingham
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alcornell5 Nov 25, 2020
I am an Episcopal Priest... I have spiritual counselors to talk with.
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I don't think you should be swayed by guilt inducing comments left here by others regarding your father 'being scared' or 'dying alone' or 'feeling unloved', etc. Nobody has ANY way of knowing HOW your father is feeling, never mind trying to lay a guilt trip on YOU for placing him in a SNF on hospice, which is probably the best thing FOR him.

You mention that dad won't remember a visit from someone 10 minutes after they leave. So being 'alone' is a commonplace feeling for him, in his current state of mind. Nothing will 'fix' that, either. My mother tells me constantly that 'nobody calls me' when I know for a fact that she gets several phone calls PER DAY in her Memory Care ALF. She believes nobody calls her, so that's HER reality, as it's your father's reality that he's lonely. It's not fact. Nothing can fix someone else's perception of reality.

That said, you have to allow your father to make his own decisions about his own care. If he's feeling poorly enough, he WILL take medications offered to him by hospice, that's how I look at it. I often say, we humans will be willing to take arsenic if we're in enough pain or discomfort......anything that offers relief after a certain point in time will do, you know? Trust that he's making the best decisions for HIM, and let it go. I know how hard it is to watch.........to stand by and feel so helpless. It's a terrible feeling.

My mother also says that she's ready to die...........and wants me to 'pray for God to take her', then accuses me of not 'praying hard enough' because she's still here on Earth, at almost 94 years old. God's just not ready for her yet, for whatever reason, nor is He ready for your dad. And they have to suffer, and we have to suffer watching THEM suffer, and it's all a big fat mess, isn't it? It's hard to hear a parent talk so often of wanting to die, yet it's understandable, given the issues they face. A true catch-22.

Maybe you can send your dad an Edible Arrangement or a box of his favorite candy, or some other treats on a regular basis, if the SNF allows it? I do that for my mother and she loves it. I was thinking about sending her an Edible Arrangement for Christmas this year in lieu of another useless top or slippers she won't wear. Go to www.ediblearrangements.com to see if there is a shop in your area that delivers. Recipients FLIP OUT over these fruit flower arrangements every single time. It's a bright spot in their day, you know?

I wish I had a wise answer for you, but I don't. Sending you a hug and a prayer that your dad finds some peace & comfort soon, and the same for you and your sisters.
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Reply to lealonnie1
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My dad didn’t have dementia and very much wanted to leave this world. His hospice workers were excellent about talking him through his choices about the end of life and how to be kept comfortable. Your dad’s hospice workers should include a nurse and social worker who can explain his options to not be so miserable. We found Ativan to be excellent for keeping my dad calm while not zoned out, sounds like your dad doesn’t have a good understanding of what hospice can do. Hopefully you can get a better understanding for him
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Reply to Daughterof1930
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alcornell5 Nov 23, 2020
Part of the problem is the cognitive impairment... he has trouble understanding some concepts... he is sometimes in denial about his coming death... he wants to die and yet he doesn't want to die... won't take morphine because he doesn't want to be addicted... despite our assurance that this is not a concern... doesn't want ativan because "I'm not crazy"... despite our assurances that it would help him breathe better... getting him to understand how medications can make him more comfortable is a no win battle. We have been able to sometimes get him a dose in his boost drink when he was home. Now in a snf, we aren't there to "assist" with his meds... so....
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I’m sorry I dont have any suggestions but I wanted to let you know I understand. My husband and I also are watching his mother slowly decline and it is painful to see. I am the primary caregiver in our home and mom is under hospice care at home. She is getting weaker and always asks What is happening to me? I’m grateful for this forum because at least people here understand and there’s comfort in that. It’s a tough time.
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Reply to MaryBee
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It’s hard. It’s good that he’s on hospice both in that he gets more attention to his needs, plus they should be communicating with you and mediCARE paid hospice has bereavement counseling as a benefit for family. I’d ask his hospice group if there are possibly any resources for you now that you can get into. Hospice group should have a nondenominational Chaplin you can speak with, maybe start there.

My mom was bedfast on hospice in a NH 18 l...o...n...g months. It was like watching a self mummification. Beyond eerie. Why mom flat just wasn’t ready to die is something I’ll never know. I asked the hospice RN how she could still be alive..... as she was getting teeny tiny, barely eating, she said it’s just a mystery only she knows. Hospice will make sure they are pain free and comfortable.
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Reply to igloo572
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I definitely feel for you as my mom’s situation is identical to your dad’s but has been going on much longer. It was over 6 years ago when she was diagnosed with COPD and I recognized her dementia. She was living with me and her refusal to use her O2 was killing me because her dementia was remarkably better when she used her O2. We moved her to Independant living and then assisted living. She’s now on hospice. The hospice counselor has been wonderful. She has refused treatments and care that would help her. I am her POA and DMPOA, but we can’t “force” her to do anything she doesn’t want to do. Although she’s never had a cognitive test, her worsening dementia has been obvious to her doctors for a long time. Knowing this just allows me to speak up for her and advocate for her, but her treatment is still ultimately in her control because she gets obstinate and violent if anyone tries to do anything she doesn’t want. Bottom line is, seek counseling/therapy for yourself to help make it through this. You may be in for several more years and it’s tough. Therapy has really helped me continue to love her and care for her and forgive and love myself. Hugs and prayers to you.
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Reply to NancyR
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I’m sorry to hear about your situation. My husband is also dying in slow motion, but he’s at home and on dialysis (so not on hospice). It is very stressful. A young man who meant to help us at home can’t handle to stress and asked to leave.

You must be dealing with a lot of emotions. You are grieving the loss of your father while he’s still alive. He recently moved into the SNF, which was a stressful transition even before COVID times. Plus, you don’t think he’s making the right decisions to care for himself. So many of us have this frustration, but you’re extra concerned because you know he has undiagnosed dementia.

How to deal with this situation? There’s no right answer. It sucks. Do what you can to give your dad the best care, take care /be compassionate with yourself and your sisters, and try to let go of things you can’t control. Hospice/SNF workers should realize soon enough that your dad has dementia. Then, whoever has medical POA can step in. But you’re still physically distanced because of the pandemic, so just do the best you can and then go out for a jog or give your sisters a big hug or eat a healthy meal with plenty of water, whatever you do to keep yourself from caving under the stress of the long wait.

Although he may say he’s ready and wants to die, it may be different than actually wanting to end one’s life. That’s what I’ve discovered. So In addition, I try to see that my husband’s life is still valuable even though he isn’t contributing to society or the family like he used to.

*hugs*
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jacobsonbob Nov 21, 2020
Is it possible that it isn't actually "dementia" or at least not one of the common or "ordinary" forms of it? Perhaps it's some other kind of psychological or psychiatric issue.
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If he's on hospice, the goal should be to make him as comfortable as possible. Some people prefer not to take medications when on hospice if feasible, especially drugs that will turn his mind into a zombie. Has the facility tried compression stockings for his swollen legs and feet? Also, there are mattresses that do a gentle massage, which might help his legs. Hospice can also order a hospital bed that can elevate his legs. My mother's doctor prescribed Melatonin for her sleeplessness. It has to be taken every day, but is mild. Remember that the stress is not his problem, it's yours. Maybe you should look for some grief counseling. This is a difficult time for his loved ones. Hospice should be able to advise and help with this. Try to be loving, patient and let nature take its course, however long it takes.
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