What to do with stress over a loved one dying in slow motion?

I'm so sorry. I watched my mother decline for a year and half. She was bedridden and had multiple medical issues. I had POA for my mom but she was mentally fine. However, her drs and staff at her ALF would talk with me and make changes that I suggested without ever asking about POA. Now, my mom would defer to me so that made it easier but I found drs and medical staff were usually fine talking with me and letting me make a decision. Sometimes I needed the ALF staff to sort of vouch for me with the drs and that could get some traction. They are with him all the time, so they know his level of functioning. I'm sort of surprised they haven't pushed the issue themselves. What I can tell you is having the responsibility for making those decisions for my mom was difficult. I second guessed myself a lot. They are right - lasix may help him but it may cause other problems. That's really true of so many decisions - you have to weigh the cost benefit and it's often just unknown.
So I just realized you said he's on hospice. I think hospice is wonderful in some cases, but I found them to be less willing to help things that would even give a whiff of "life sustaining efforts". I found there are only 2 extremes in healthcare - do everything to save someone, or do nothing (or try to hasten death). In between is a no man's land and I was there twice with my mom. One of the kind hospice nurses agreed with me, it can be a tricky place to be especially with complex medical issues. Make sure you tell the hospice people you want X, Y, or Z to "make him more comfortable" or to "ease his suffering". I spent 3 months being accused of not being "committed enough" to hospice. 3 months later, my mom was discharged from hospice because she was doing so much better and she went on to live another year beyond that. It wasn't all roses, but we had many good times in that year. It was frustrating as heck because my mom was ready to go and I really did just want her to not suffer. But sometimes NOT treating things IS letting them suffer. If his inability to make decisions is causing him harm, it's not really in the spirit of hospice to let him suffer so you might try that tactic. It's a difficult dance but my first thought is discuss with the SNF staff and see what their thoughts are. Try talking to the staff, not the administration. Mom's second time on hospice I knew sort of the right things to say and my mom really was actively dying. I also switched to a different hospice provider. I did fight for her til the end though to make sure everything was being done for her comfort. When she died she had started an antibiotic a few days earlier for a suspected infection. She really was feeling better from that before she died.
Also, how my mom ended up on hospice the first time was her refusing care. She was a retired nurse so she knew her rights that she could refuse care. They can do that and there's nothing you can do. My father had died suddenly and my mother stopped eating and taking her meds. It was a slow road back to convincing her to eat and take meds again. That was precovid so I could be there with her daily. I brought her favorite foods (a LOT of which got thrown away) and just worked with her slowly and we eventually got her back. It is a tough pill to swallow but if they refuse care, there's really nothing that can be done by medical staff. Sometimes you have to be the one to convince them. The other problem with it is medical staff stop trying. My mom would sometimes eat or sometimes take her meds, but they stopped offering which would send me round the bend. So I would go get the meds and the food and try. Often, she wouldn't do it for me either but she did enough that we slowly started moving in the right direction. That's very difficult to do if you can't be there.
I'm so sorry you're going through this and I hope things get better.

He sounds like a man who could decide to stop eating and taking in fluids, who could choose to end his life on his own terms. My wife is no longer competent to make that decision, but if she could I'm sure she would. Also, if he doesn't have his documentary stuff in order, will, powers of attorney (property and health care), advance directive, etc., now is the time

My dad is currently in hospice and has said two times in the last weeks that he wished he had a pill to take that would put him out of misery. However, this depends on his mood. It sounds like the covid isolation is affecting your dad's mood and the depression is making him want to just be out of suffering. One of the best things you can do is to talk to the hospice social worker and tell them the situation. My dad is stubborn also and doesn't like to take medicine. It's hard to watch - and traumatic - the decline when you know there is nothing you can do. My dad refuses to use oxygen. I'm the HPOA, I knew that I would have to make some difficult decisions. So far I've made the right ones, but it doesn't mean that it's any easier.

It is so difficult and heart breaking to watching our love one decline..
please talk to someone you feel trust and comfortable. I'm Praying for you and your family.

Edit: Reask his team about medications.

Imho, perhaps it is worth a chance to reask him if he wants some of these medications that could help him as maybe he did not hear correctly. Prayers sent.

First of all, make sure YOU have medical power of attorney and as such, I think YOU can demand the medications that will help him. If not, get one at once. And get a regular durable power of attorney so you can handle all other issues. This is so sad - he is ready to go but there is no cooperation. You must take over and make the rules, not him. Good luck.

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.

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.

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.

You must allow him to make his own decisions. His life, his decisions. You don't have to like or understand them. I know, it's not easy. If he does not have dementia issues, then he (and you, when that day comes) will be allowed to chose their own 'end of life lifestyle'. Lasix and morphine both quicken death. And ativan can have opposite effects on elderly, causing mental/mood changes, sleeping problems, increase in sexual interest, hallucinations, loss of coordination, drowsiness, and sleeping problems which increase the risk of falling. Memory lapses are a normal part of aging. Something is keeping him here as you've described him as 'stable.'

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.

As an RN, I understand your frustration. You want him to be as comfortable as possible. As long as your father can make decisions about his own care, you need to let him. He is suffering because he refuses medications to help him to be more comfortable. However, his nurses are probably using all the non-medication methods to keep him comfortable: frequent position changes, keeping the head of the bed up, elevating his feet and legs, warm or cool packs that ease discomfort... He probably has his own tv near his bed. However, many people find listening to their favorite music on a radio or recording helps them to relax. If he can read, send him books with short stories, magazines with articles about activities he enjoys, and the like to read - or have read to him. Try sending easy to eat treats and drinks that he could snack on since I doubt he has the energy for full meals.

Try to communicate with him virtually via computer - Zoom, Skype,,, or video phone calls - FaceTime. It is not as good as "being there" but it will help him and you to communicate your affection.

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*

Your Dad wants to die so their is nothing you can do about it.

He doesn't want his life sustained.

He is ready to say goodbye to this ole world, so you should get ready yourself.

Let your Fad do exactly what he wants.

When my Dad's feet wojld swell, it would help to give him foot massage and keep his feet elevated at all times when he's in bed or a recliner.

The best thing if it's a choice is to let your Dad come home to die where he would feel loved and not be lonely or scared and end up dying alone.

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.

When you say he cognitively "performs for docs" has none of them given him an actual cognitive exam? Not just "talking to him"? If he doesn't have dementia/cognitive impairment then he does get to choose how he exits. Honoring his choices is the most loving and respectful thing to do for him, understanding that it is painful to helplessly watch. At some point he may lose his ability to communicate his wishes...does he have a Living Will in place that would allow for the administering of pain meds at a certain point? Maybe have the hospice people talk to him about filling one out so he stays in control until the end?

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

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.

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.

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.