@Lindagaf i am sorry about your situation.
It reminds me of the serenity prayer,
“ God, Grant me serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
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Lots of good thoughts and 
HUGS for you.
When I was caring for my mom in those final weeks/days, I would get right up in bed with her and snuggle. She loved that. I would often sing the song she sang to us when putting us to bed at night, ‘You Are My Sunshine’. When we weren’t snuggling, I would hold her hand and sing hymns. One of her favorites was ‘I Will Not Be Afraid’. Hymn: I will not be afraid
I relearned how to pray the Rosary with her.
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There are no “right” or good answers. Each of us has to do what we feel is appropriate and what we can live with. Be kind to yourself—it is hard to watch our loved ones getting more confused, dependent, weaker. It is good when others can help us along the way—good for them and for us.
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It’s a heart wrenching process. I’m so sorry Linda. Wish I had some magic words but know that we are all in your corner and thinking about you. 
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@Seabass927 my mother also has vascular dementia and had deteriorated after COVID. With UTI’s on top of that, terrible situation. I will say that any hospitalization greatly worsens confusion, even without the UTI or COVID. My mother forgets her assisted living in one day and when I take her back, she says “is this the new place?” She is disoriented but after days or maybe a week or two, does get back some of her cognition. I am hoping you mom improves. Handling your Dad and selling the house, a lot on your plate!
@Lindagaf is hospice involved at all with your father? (I did training with them and they said that our loved ones have an easier time letting go if we are not in the room, don’t know if that helps).
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@Lindagaf I am so sorry. This is where therapy (even short-term counseling) can really help. Meanwhile, some relaxation techniques might help you feel less overwhelmed with the very difficult decisions you are faced with.
Although it’s geared toward Covid stuff, this article has the world’s easiest breathing exercise that may help that mind-racing feeling.
I know all of us here are empathizing. Please talk to us whenever you want.
(((((HUGS)))))
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So DH is on the road again, probably the last time for seeing a parent (this is 4th trip since Dec, 860 miles each way) - first was his dad deciding ‘comfort care’ and dying within a week of that decision in Dec. DH helped with his mom’s care (24/7 with diaper changes during the night) at home - when she went into the hospital he came home, then went to WI again when she was home and needed him to do nurse aid duties 24/7. His mom went into skilled care a week ago last Thursday, and has now decided to refuse to eat (and of course take her meds) - so she went on Hospice care. DH’s brother who lives in the area went on his planned vacation and DH said he would ‘cover’ with mom until Monday when another brother (who lives 5 hours away) will come. DH is helping our daughter move on the 10th. God only knows when his mom will die, but it will be soon. Priest has been called for confession and last rites.
We sent some lovely flowers last Thursday, but I guess not enough to cheer her up or steer her mind into wanting to live. She was sad for her physical losses and in denial for a long time on what was safe and not safe being at home. Before she went into skilled care she told the family she was dying. Her wish was to die at home but DH could not be her 24/7 attendant for weeks and months on end. The skilled care facility gave her excellent care - it was her mind set on dying.
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We’ve had seniors in the family choose to stop eating and drinking and go in a matter or days, but we’ve also seen people last much longer. It’s hard to know, and I have had hospice visits the hospice person predicted, perhaps a few weeks, only to have the person die a few hours later.
My mother looked like death repeatedly over the last 18 months, I cannot tell you how many times I softly crept into her room searching for signs of breathing. Yes, her last week, I was pretty sure it was the last week, but it had felt similar (though not quite as much weight loss) 6 months prior.
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@Lindagaf I’m so sorry to hear what you are going through. I believe guilt is one of the most powerful emotions that a child caring for a parent has to manage. I wish I had advice, but I am struggling with it, too. No one is perfect, and that you’re doing the best you can. It’s clear from your posts that you are a loving, caring daughter who is going through so much. Please don’t be too hard on yourself. Your brain and heart probably will need the reset of a few day’s break to prepare you for what lies ahead.
I hope and pray that your dad continues to remain pain-free and comfortable. Hang in there. you’re doing an amazing job.
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When my father was dying, it was really stressful for me not knowing when to travel to be with him or how long to stay. “I’m fretting about if I should extend my trip, because what if I leave and he dies the next day?” That was my feeling exactly. At that time, I had other responsibilities such as a husband with a chronic illness and a job. I kept thinking that if I knew it would be x number of days, I would know whether to stay on or fly home and come back…but that is exactly what I did not know. Sometimes that decision about booking or changing plane tickets seemed like the most painful part of it all because I would get it right or wrong, while some of the rest of the hard part was so clearly out of my power to change and therefore easier to accept, no matter how sad it was. This really is one of these situations where you just have no control and you have to let go of that illusion of control and the guilt about being a good daughter. You are a good daughter, whether you are there at the last or not. The only tips I have for you are to take a few breaks to breathe, take a walk, take a shower, especially when the tension with the rest of the family starts to get to you, and encourage the others to also take short breaks, too. It also helped me a lot to go somewhere away from the house and call a friend or my husband, because during those calls, I could get my emotions tended to. Then it was easier to have patience with the family members who were also suffering watching my dad die.
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Great points! My mother lived in our home until her death, the week before she died, I spent several nights in the chair in her room, death seemed imminent, but I could not maintain that effort. She finally went sometime between 2AM-6AM, with no one in the room. So, even if you are right there, in the house, you might not be in the room.
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I spent a month dealing with bureaucratic hurdles to get a PT for my mother who works often at her assisted living, and feels like a sister to me. It has been impossible for me to ascertain what is really going on with my mother from staff and I honestly wanted the PT for broader reasons than just PT.
So the PT talked to the director (whom I have been emailing for 2 months) and they are recommending gabapentin for anxiety, in the morning (she already takes it at bedtime).
My mother is post-COVID, dizzy and short of breath when she gets up, but fine after awhile. But she cannot remember that. She calls me moaning and gasping in the morning and I tell her it would be good to get up, she will feel better, but she really lives in the moment and does not believe it (of course) even though it happens every day.
Dementia definitely worsened by COVID, and “bran fog.”
I don’t think she remembers her friends so going down for meals is lonely and boring, plus they are still distanced. She is utterly unable to participate in any activities.
She is wayyyy beyond assisted living. My brother said “well maybe the best thing is to just let her stay in bed.” But she is miserable. I think she deserves better quality of life.
He also thinks I should have her cell phone taken away but it is her lifeline and she calls all day to hear my voice.
Soon, we can all hope, we can spend more time with our parents or whomever.
I am wondering about getting hospice involved again- for the daily aide and company until I can be there.
Just venting.
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Thanks @compmom. I just read your latest post as well. Multiple nurses and doctors said to me that while my mom was physically asymptomatic with COVID in hospital, they just have no idea what it did to her brain - if younger people are suffering from fog, how must it be for elderly or dementia patients? Since I last posted, they actually moved my mom to a memory cottage with a higher level of care. They said that the hospital had painted a rosier picture of her abilities at discharge, and they are finding that she needs verbal cueing for all of her ADLs. She just is completely lost.
is there a memory care level at your mom’s AL place? One thing that the placement coordinator told us when we were looking for care facilities was that AL can be more isolating for dementia patients because the staff/resident ratios are not as small as with specialized MC. I agree with you that even some level of engagement for her would have to help her body and mind.
One of the things I find most challenging about being a caregiver is how monumental every decision can be - even something as simple as taking a cell phone or going to a doctor can be.
Hoping you can find a solution for her.
Thanks @Seabass927 . I am glad your mom is at a higher level care.
My mother’s assisted living facility is an elegant place full of people who need memory care. I mean a woman who thinks her husband is still alive, another one who doesn’t know which way to turn once off the elevator. Etc. A small group participate in activities- maybe 15 out of 68. In good times. preCovid a good number never left their room. Staff are not allowed to cajole going to meals or accepting help even when dementia has progressed.
There is a 4th floor memory care unit with no access to outside. It is cozy though. They only place people there if there is a wandering risk, self-harm , etc. so it is more a matter of liability for the facility that dictates entrance. I have asked for years.
I have been in touch with a really good stand alone memory care facility (no assisted living) where people at least say they are concerned with quality of life and fitting help and activities to dementia. COVID interfered with placement. Now I am afraid my mother may be too far gone for a move like that, but this situation cannot continue.
I do 100% everything (preparing taxes today!) and both brothers have moved out of state so at this point I am not waiting for consensus. Once I am vaccinated I am going to try to move her. Unless we come up with a better solution!
Good luck with your situation too! Hard one.
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What a wonderful post. Thank you so much.
How do we say goodbye for what might be the last time? I feel that’s the biggest torment right now.
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@Lindagaf I spent my dad’s last day with him, just hanging out and holding his hand. He waited half an hour after I left before he passed away, which I have read is very common.
When I look back at the last two years of his life (my daughter’s last two years of high school, OMG!) it’s hard to believe how stressful it was. And it got worse and worse as the months went by. But it took years before I had enough distance to gain that perspective.
(((((HUGS))))) to all of you. It was totally awful minus pandemic which is such a stressor for everyone! You are doing the best that you can, being a good enough daughter/son/daughter-in-law/son-in-law/niece/nephew while handling being a sibling and a parent as well. It’s not easy, NOT.AT.ALL.
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@Lindagaf you are experiencing what a lot of us have gone through, but perhaps it is all compressed for you which makes it harder. I will say, for the last 2 years or so, I consciously thought every time I left visiting my parents that this could be the last time I see them. At the time, they were not in imminent danger, but I knew a heart attack or stroke could come out of the blue.
You have to also think - would they want you to be so stressed? I know my parents would have been mortified to know how much my life was turned upside down to manage their care. OF course I wanted to do as much as I could, but when I had to do certain things ( move them to memory care) I had to be reminded that it was not my job to set myself on fire just because they were cold (I read that advice here).
You know where this train is going. I don’t think it is imperative that you spend every minute by your dad’s side until he passes. Does your dad know you are there when you visit? Is he aware of what you can do for him? If it gives you comfort to sit and hold his hand, then do that. If he is not aware of you or your care, don’t be afraid to outsource some things to other caregivers.
I did not get to see my parents much in their last few months even though they were literally a mile away. I feel like I did all I could. But it’s never enough - what we really all want is more time with them in the “good days.”
Sorry for the ramble. . . . but I firmly believe that most parents would want their children to also take care of themselves too and not martyr themselves over me.
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Re: the phone. My dad used to call me up and say “Surfcity, I need to know how to get in touch with you. I need to talk to you later today - how can I do that?”
And I’d say, Dad you’re talking to me now! What do you want?
I really think it was more about anxiety and control. For a while there he was constantly calling me to ask when he could call me. LOL.
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@surfcity thanks so much, your posts are so helpful. And my dad is fully cognizant, which is a blessing.
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My DH joins me now as being an ‘orphan’ with his mom dying early this morning a day before her 92nd birthday. She had her last day with her youngest son, and the day before with DH. Another brother was arriving today to have a little last time with her, but he was too late - although he spent quite a bit of time with her in Dec as did all her sons.
Our family has very little time on Hospice - my dad 2 days, my mom 5 days, his dad 7 days, and now his mom 5 days. My dad in hospice/hospital room, my mom at home, his mom and dad both in skilled care - although his dad was at hospital and then transferred to skilled care after a couple of days. His mom had the same skilled care room as his dad had. She had held his hand some time on one of his last days in that room.
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