After his latest hospitalization, my father was discharged into in-home hospice. He has a number of things going on, including Parkinson’s, but his hospice diagnosis was congestive heart failure. He is 90 years old, very weak, and has swallowing problems so that he is on a pureed and thickened diet. My sister and I definitely feel that hospice was the right move at this point, but we can tell that our mother is going to have a difficult time changing into a hospice mindset. It’s not that she wants him to ever go into the hospital again or receive aggressive treatment, but she does tend to panic and I don’t foresee her relaxing into hospice and letting Nature take its course. Any wisdom out there on how to help us keep our mother from calling 911 and worrying about every pill or morsel of food that goes into his mouth? We’d like our dad’s remaining time to be comfortable, pleasant, and as stress-free as possible.
Can other people from the family be with them a lot of the time?
Your mom might need some reminding about how much hospice is doing to make him comfortable and how calling 911 would land him back in the hospital, which is about as comfortable as spending a whole night in a bus station (only worse because bus stations don’t stick IVs in your arms).
I’ve been through this. But my mother, as an RN, was more of a realist and was totally on board with hospice when it came to that.
I was there with her. My advice: be there with her. Take off work, move in, do whatever you need to do. It will, in the long run, be a blessing to you as well as to your mother.
I think no one really wants to think about what being on hospice means, dying. When MIL & then FIL went onto Hospice , we did not have a lot of death discussions at that time, we’d had them years before. But what we did talk about was how great it was to have everyone come to them, no stressful doctor appointments, no transport to arrange, no long tiring outings, no invasive tests, just lots of people willing to do whatever it took to help each of them feel as good as they could each day.
Hospice was pretty kind about doing a bit extra when Mom or Dad needed it, emotionally, not physically. So, an extra visit now & again. What I noticed FIL really really enjoyed was that they would stand there and listen to him relate his entire list of odd, meaningless, symptoms, and his frustration with all the things happening. No doctor can spend 30 minutes hearing about how frustrating it is not to walk well any longer, or how that replaced knee never has bent as far as it should, and how sleeping is rough, and so on and so on and so on, over and over, the same issues. But hospice did listen and even let him have some PT to see if he could walk better.
We thought he would keep fighting hospice and wanting to see his his doc, after six months of taking himself to the ED and every test and specialist possible, but he came to appreciate the attention to him and his feelings. I think they will let Mom talk, too.
Keep in mind, she is adjusting to her DH dying and to being alone and to wanting to not feel like she did not do all she could, that she did the right thing, so help her see how right it is for him.
If you or other family members can’t be there, consider hiring a caregiver at least part time, to take some of the strain off your mother. Not everyone can take an extended time off work.
My mother had a 24/7 live-in caregiver during her in-home hospice, but she’d had the caregiver for 1.5 years due to increasing dementia and not being safe living alone. It’s not the same when there is a spouse, but a part time caregiver can still afford respite to the spouse.
My mom has had 24/7 aides in the home for the past year, so she does have help with the physical things, and my sister lives nearby and is as involved as she can be. I live across the country and muddle through with frequent phone calls and visits every couple of months, and of course feel guilty that I can’t do more.
@b1ggreenca as the sister with the parent responsibility and with siblings far away, I would suggest you do all you can to support that sibling, mentally, and don’t doubt her decisions, unless you have an overall reason to doubt. Other than a risk to your folks, you have to let the person who is responsible make their decisions without second guessing. Be their champion, their support, so they have more and better energy to expend on the parents.
When my stepfather was in hospice my mom was helped by hearing that the vast majority of nurses say that they want hospice care in the end and not having medical intervention in the hospital. When they said it was time for him to stop being forced to eat and drink we brought her info from hospice about how eating and drinking at the very the end when the patient doesn’t want to eat or drink causes pain and discomfort and that desperately trying to get food and drink into him would be cruel.
Just want to support what Somemom wrote. I cared for my dad on a daily basis for a year. I resented family coming in the last week of my dads life and taking over. He was already in an ALF, with 24/7 extra caretakers. They insisted on moving him into Hospice center, not playing music, TV, etc. as I worked in SNFs and ALFs for 8 years, I felt I had far more expertise in creating a loving environment. On the other hand, my sister had been very supportive with phone calls thru the years.
Yeah, my sister was very officious and touchy in regard to issuing advice, but didn’t come. Sure, it would have been very inconvenient for her, but she could have. I don’t blame her for not coming, because no one other than my mother, and to a lesser extent I, actually thought that it would happen so quickly. Finally, at some point when I was on the phone with her, trying to diplomatically clue her in and reject yet another piece of unrealistic advice, my mother grabbed the phone from my hand and said “F is DYING,” and hung up on her.
That rocked her back on her heels. Poor sis. She was afraid our mother didn’t want to speak to her. I think I made her understand that that wasn’t the case.
The median time in hospice care is 22 days. I wish I knew that before losing my dad after 3 days.
My MIL has been in hospice for almost a year. She’s 93 and tough. It’s been hard on my husband and his four siblings. She’s almost 3,000 miles away so it’s hard for us to do much.
OP, I don’t have any advice, but I will keep your family in my prayers.
I think it can help to distinguish between “in” a hospice facility vs getting hospice care where one lives. The former is about a more distinct phase of end of life.
I am hyper aware of the fact that I’m at a distance and my mother, and to a lesser extent my sister, have to deal with my dad’s health issues every day. So in addition to getting out to them as much as I can, and calling several times per week, I try to be a sounding board and let them vent to me when they need to. I certainly don’t try to substitute my judgement for theirs, and always assume they have my dad’s best interests at heart. However, I also have to be able to live with myself, so if I do have a concern or question about some of their decisions now and then, I have to feel free to express them or how can I sleep at night? It’s a tricky position, wanting to speak up about important things yet not step on any toes, especially when people are so stressed and sad and frustrated in the first place.
I think both my parents did hospice for about a week. My brother was in denial with my Dad and I came up too late - he died the morning I came up. I knew better to listen to him for my Mom. That said, I agree completely that the person who is on site knows the parent’s needs the best.
B1ggreenca, you sound very sensitive.
My mom died in a few days, and my dad had a stroke sitting by her side in the hospital. For many months, he was at home. I had our mutual housekeeper come to him several times a week. I dropped off meals every night when she wasn’t there. I dropped to 85 pounds, trying to care for my son, work full time, and be at dads medical appointments.
What broke my heart was that my son was a junior in HS, and applied for college. He wrote an essay on on his GM as his hero, and “my already thin mother becoming dangerously thin” caring for my GF, and coming home from school to an empty house, learning to take care of himself.
After my dad had another stroke, I moved him to an ALF. When needed, I added a day time aide, then full time. His facility offered excellent food and nursing care. I would have liked Hospice to visit him there, not have him moved into the Hospice facility. Still, he was gone within the week, so maybe that was a good choice.
I don’t think that is necessarily the case. It certainly didn’t appear to be with my father. He could have gone to a hospice or nursing home with hospice care. Instead, we chose to bring him home.
I think a lot probably has to do with how much care the person needs, and who is available to do it.
Yes, my MIL is in a nursing home with hospice care. My SIL lives nearby and visits her often. We offered to have her live close to us, but the kids decided the move would be too hard on her.
Hospice was quite quick for my Dad, too. Day 1 we called Hospice Day 2 they came out and did paperwork, Day 3 they delivered the bed and began meds, Day 4 he died, never having awakened from Wed meds. A surprise to us and to the nurses.
I had told my brother and his wife several weeks before that I would visit as soon as possible, they chose a date, I told them, kindly, that I would come sooner, if possible just because he was going downhill. They arrived the day after he died and said, “don’t worry, we know you would have told us to come sooner if you’d known”.
I did not remind them I had told them to come sooner, nothing to be gained, but sheesh!
All the hospice orgs in my area employ social workers to meet with the family and/or individuals as needed. They are trained to help families navigate the hospice process. Many families find the counseling very helpful.