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He has declined a lot since rehab (came back to his home June 19). He can't talk. My biggest concern is to want to appear caring to his stellar caregivers and to fend off my sisiter's really poor performance of old-fashioned caring (while I secretly do the same with more experience). I know this isn't kind nor normal. I don't care.

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I can relate. I wasn't there for either my mom or dad. With my dad, it was mostly circumstances but with my mom, it was almost deliberate. With my mom, I had a funny feeling but didn't choose to act on it. When I was finally accessible, it was over. Don't beat yourself up. Others' opinions don't matter.
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I am a very kind and compassionate person. However, I will not be present when mthr passes. That will not diminish my standing as a kind compassionate person. I will be sparing her a potential negative outburst from me which would burst my bubble about me being nice.

Mthr was a horrible child and animal abuser. I don't know why God has kept her here for so long or why she was never confronted by anyone else about her wickedness. I know she will go on to her reward, whatever that may be. I don't need to be there to see her off.

You do not need to force yourself to do anything to do with your patient's death. You are still a good person. If you can't get over saying no while located in town, when it gets to be close to passing, you could get on an airplane and go elsewhere and have that reason when asked - "I couldn't make it back from Cleveland in time."
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I elected not to stay when I knew my mom was in her last hours, (I KNOW that my dad was standing in his tweed suit extending his hand to her to take her with him before I left her room that day).
There was a Social Services intern present who did her best to guilt me into staying, and although I still remember my discomfort regarding her comments, I knew my mom and I knew myself.
At the time, I was averaging 4 hours of sleep a night, and although I had requested that I NOT be called until after 5 am, the phone rang at 3 because the funeral home wouldn’t take her unless we committed to use their services for her already prepaid funeral.
My mother was in the final stages of dementia at 95. I do not regret my decision.
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You are not s bad person at all. I was told by the hospice nurse a month before my dad passed that they “thought” his kidneys were failing and he would get weaker and then pass in his sleep. I struggled with this as I wanted to be there by his side, what if it happened while I was asleep. The day he passed he wasn’t feeling well and was vomiting still no signs to me he was actively dying. I called hospice emergency line starting at 7 am and my dad passed at 2:34 pm the nurse showed up 20 minutes after he passed. My 16 year old daughter who my father was closest with and my mother were with him that afternoon. He had sent me up to get him pudding. My cousin ran upstairs and told me I needed to get downstairs immediately. When I ran down stairs my father was sitting up and brown fluid was pouring out of his mouth like he was a faucet and someone had turned it on. I checked his pulse and it was there, he was unconscious. My daughter and I continued yelling for him and trying to wake him up. I finally sat next to him and held his hand softly saying daddy. At that moment the vomiting or whatever that fluid was stopped and his pulse did as well. He died in my arms with my mom on one side and my daughter in front of him. I now wish I had not been in the room with him. 6 months later and I can’t go into his room in our basement (which is where my laundry room is as well) without remembering that tragic moment and hoping he wasn’t suffering. I’ve been doing grief counseling and I’m honestly angry that it didn’t happen peacefully and the counselor thinks I may. E having some PTSD since the way he passed was so traumatic. After he passed I sat with him for 2 hours just him and I, he was gone but my brother and sister were on their way to say goodbye. I feel like that was yet another traumatic experience.

My point is. Do what you think you can handle and what feels right. You aren’t a bad person for not wanting to be there, that’s what hospice is supposed to be for. My hospice failed me with my dad in more ways than one, yet another thing that makes me angry. If you are meant to be in there you will be. My thoughts are with you and your family.
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I was present during my Mom's long death, and still am conflicted about it. Before dying she had expressed that she didn't know how she felt about family being around her. She felt it was too much impose on family, and yet she seemed to cede that maybe whatever happened was more important for the living people to wangle through. What I witnessed during her dying was that she came in and out of cognizance. On her last few days, she seemed unconscious, but had a faint smile on her face. It was traumatic as death got closer, but I guess I'm glad I was there. Mom was an extremely no-touch, "shut-up-and-leave-me-be, no -"maudlin" kind of person. It was surreal to be there.

What seems to be happening with my father's decline is that I am highly attuned to the potential fear he feels about death, and want to be there for him. But unlike my mother, he cannot verbalize and his dementia is getting so bad that it seems any actor could plug in the name of his dear grandmother and chat at him, and he'd be at peace. I don't want to regret not being there, and yet I feel paralyzed, not wanting another horror in my world perception. Maybe when the time is closer, I will have more clarity to the side of hoping that my compassion can be there for him. Being long distance, with a handicapped 86-year-old partner who witnessed my mother's abuse and my father's constant capitulation to her, makes this much more of a logistical problem than if I lived even within an hour's drive. I surely appreciate that you have brought this up.
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If you don’t want to be there, then don’t. There is no right or wrong answer. Do what feels right. But make sure you say goodbye. My MIL was on hospice for the last 3 months of her life and it was hard enough to see her confined to a bed, withering away. Her skin had a gray pallor, she could hardly eat so she became skin and bones. Her hair thinned and turned grey. I don’t think any of us wanted to or planned to be there when she passed. I don’t know if she wanted to pass alone, or surrounded by her family or with just her partner present. I know her partner wanted it to be just the 2 of them. I think we all had it in our minds that when the end was finally near, we would all gather at the house and say our goodbyes and then go home and wait for the call telling us she had passed. Unfortunately her partner, who was her primary caregiver, kept us in the dark her final week. So we didn’t get to say goodbye. The night before she passed, I asked him directly—“did the nurse give any indication how much time she has left” and he lied to my face, he said no the nurse wasn’t telling him anything at this point. We got the call early the next morning, she passed in her asleep. Alone. And later that day I heard her partner tell someone on the phone that she had been deteriorating all week and the nurse had said she wouldn’t make it to the weekend. (She died on a Friday). She was a private person so I choose to believe she didn’t want us there but I know she would have wanted us to say goodbye. I wanted to have one more conversation with her, so did my BIls wife, but neither of us could bring ourselves to do it while she was alert, we knew we would too upset and we didn’t want her to think she was being a burden or causing us any pain. We both thought when the end was near and she was no longer conscious, we would have those conversations with her but obviously it didn’t happen.
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Appearances don`t matter, be there for him as if it were the last day. One thing we humans really want is for someone meaningful to be with us when we leave this world, however hard the road might`ve been for all involved.
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((((((50s))))) In my view, if you feel a strong aversion to doing anything, then don't do it. Listen to your body. It is telling you to protect yourself, and maintain your emotional and physical distance. Anyone who has not been abused as a child does not understand the need we have for distance and detachment.

You are a kind and caring person and a thoughtful one, despite what you have been through. It is time to look after yourself. (((((((hugs)))))) I know this is a very tough time.
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You see him so you can say goodbye. My DH couldn't talk and went into a coma the day before he passed (as did my mother) and I will always be thankful that I had the chance to say goodbye.
My father knew I was there with him until the last 20 minutes.
You only get one chance to say goodbye. Please don't blow it for yourself - to h*ll with what anyone else thinks. You say goodbye for your own closure.
And I had to apologize to all 3 for my own shortcomings and will be forever thankful that I did that.
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Ahmijoy & Golden, thank you also for sharing, it sounds like old hat to say we should all know this is ok, but I never cease to feel each unique support like it's a new breakthrough and lifeline.

Yesterday the hospice nurse suggested I try Skype with Dad's caregiver's tablet. I feel this deep aversion to doing so, but will surely give it a try when I can press those buttons without my insides rebelling. My will is strong, my body has trumped my will.

You've helped so much.
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(((((50schild)))) do what works for you. You have been through a lot already. My mother is declining and I will take it as it goes and make no heroic efforts to be there. I am at a distance and have my own health issues to consider. Look after yourself and your own mental health. This is not an easy time. Keep us updated!
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Dear 50’schild, don’t t overload yourself with guilt for how you feel. I wasn’t there when my mom passed either. As a matter of fact, because I also am my husband’s sole caregiver, I put quiet hours on my phone from 11PM to 7AM. She passed at 3:30AM. The hospice nurse who called asked if I wanted to come see her and say goodbye. I told her no. I had gone to visit two days prior and three of us couldn’t wake her up. I have tried to put even that memory of my last visit out of my mind. We are not terrible people because we feel like this. I am not and you are not. Don’t guilt yourself into thinking you are. I know you will find your own peace.
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Thank you so much everyone. I treasure every one of your posts, it's going to help me through. Wally003, thank you especially for your profile-driven comfort answer. Somehow, with all family falling apart, ill, mentally ill -- it does feel I have survivor's guilt. I am upset that I've been doing this eldercare thing since 1996 with relative equanimity and only now, do I notice my inner rage and self-pity. I am trying to look at each day as a new opportunity to dig deeper into my motivations. And also allow myself to tune completely out. You guys have helped tremendously.
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I have 2 Hospice experiences.

First My Wonderful Mom, who had Uterine cancer, with horrendous Mets to her pelvic bones, and and was in intractable pain. She was on Hospice care, in my sister's home for 5 Months, and I am one of 6 kids, we are an extremely close family who all took care of her, it definitely takes a village!

My sister an her husband had a small family business,  she also was taking care of her 3 Grandchildren,  so leave it to say, my sister was extremely busy, but wanted this, and felt she could handle it with all our help, and we really all worked together like a well oiled machine.  

I remember asking my sister if our Mom dying in her home would be the right thing,  and she responded honestly,  that she "did not know", but we soldiered on. 

Thankfully,  our head Nurse took that decision out of our hands, as 8 days before our Mom passed, she told us our mom was actively dying and she strongly recommended that Mom be placed into the Hospice Hospital,  and We All agreed, even our Mom, as it was thought best, that Mom not pass in front of the 3 small children for fear it would scare them, and possibly scar them for life. It was a great option, it was a beautiful facility, and our Mom had the very best of care and at least one of us was always by her side, and after about 3 days there, she quietly slipped into a deep coma like sleep, and passed away after 8 days,  with all 6 of her children with her.

My other Hospice experience was a lot different,  my husband and I had my FIL living here with us for 13 years,  was diagnosed with Lung cancer in hospital,  with Mets to his rib bones, following a fall,  pneumonia and sepsis. He was retuned to our home for Hospice Care. 

Our Hospice Team was wonderful,  but hubby and I did everything quiely on our own with frequent visits from our 4 grown children and grandchildren, but with zero offer of help from hubbys 2 siblings. 9 weeks after entering Hospice,  his symptoms steadily worsening over that time,  his final week or so was the worst, he was very agitated, and in more and more pain, it was awful.  Several bad nights in a row, we were exhausted. The morning of his passing,  he woke with a very high fever, so I put cool cloths all over him, and left the room to call my Hospice Nurse,  and in that few moments that we left him on his own, he quietly slipped away.

In hindsight,  I would have much preferred if he had gone inpatient,  as I am still not over (now 9 months later) him passing away in our home, and still find it difficult to enter the bedroom he died in.

There is no right way to say goodbye,  as I understand and have personally witnessed, the patient often waits until you leave the room, but whatever is your reasoning,  either sheer exhaustion,  fear, or other very personal reasons, do not be pushed into doing something that you do not wish to do.

Death is very personal,  and as long as you can give your Father the love and respect before he dies, you've done enough. Take Care!
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I hope you don't mind I read your profile. you've been thru a lot... is an understatement. you don't seem unkind but the complete opposite .
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Mom was on Hospice in a NH for a week. I really couldn't see sitting and waiting. She had closed her eyes and never opened them again. Everyone went to see her. My nephew and I went to visit, left at 1:30 and they pronounced her gone 20 min later. My GFs Mom was dying in her own home. People were there around the clock. But she knew they were there. Mom didn't know. Its been said "I left for a little bit and when I came back, they were gone." We deal with death in our own way. And I understand where you r coming from.
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As Midkid58 said, tell him you love him.

Try and make every visit a happy one. You do not need to be there at the very end. You have been there every day for him, in your heart and mind, if not able to, in body.

Take care Buzzy
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You're worried about appearances to his caregivers? Trust me, they have seen it all and then some.

You're probably exhausted and frustrated. That's normal. Someone lives to 97, they are going to be in the way (I didn't make that up, some comedian said it, and at the time I was appalled---many years later, I sadly agree).

Do you not want to actually be present when your dad dies? That's OK. That's totally normal, as it can be scary. Are you just worn out? Do you fear that the other caregivers will judge you? Again, they've seen it all and grieving (even pre-grieving) makes us act in ways we wouldn't, normally.

Don't be hard on yourself. My mother is 88. She's worn out. We're all worn out. I'm sure I have not always been kind to mother as I should have.

If your dad is in hospice, let the hospice workers set the tone. Let them step in more. Most hospice co.s will help you with extra caregivers at the very end.

Don't be so hard on yourself. We're all just human, and we break when it all becomes too much.

Be yourself and give him as much time/love as you can. Don't worry about appearances. Each time you leave him, tell him you love him. Just in case he passes when you're not there. That might alleviate some of the stress and worry. Leave on a good note.

It's totally normal and I think it's not unkind.
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