Home Hospice

Holman · Post by **Holman** » Fri Jul 10, 2020 11:59 am

I've mentioned that we combined households with my elderly in-laws 18 months ago, and that my FIL (91) has advanced dementia.

It has worked out well as a living arrangement, but FIL's other medical conditions have worsened, and recently more severely. The most difficulty comes from a blood condition (I believe it's a myelodysplastic syndrome) that causes very low blood-cell counts.

For several years he has required drugs and then increasingly frequent blood transfusions to make up the cell count, recently to the point of one every ten days, but they are becoming more and more difficult for him and less and less effective. The doctors have said that now there is really no reliably effective treatment moving forward for someone of his age, and the dementia adds to his discomfort and distress.

This morning I sat in while MIL and my wife met with a program nurse and decided on a transition to home hospice care in place of further aggressive treatments and multiple hospital visits. This decision has been months in coming, and it's one that FIL expressed (prospective) support for back when he was capable of making decisions. What it means is that a nurse will visit the house several times a week to help with pain management and other issues (including, probably, administration of oxygen), but that someday relatively soon FIL will probably die in our house.

It's the right thing to do, but you can probably imagine how difficult it is to make this decision. Implementing it will be hard as well.

Has anyone else gone through this?

KKBlue · Post by **KKBlue** » Fri Jul 10, 2020 12:37 pm

Very happy to learn of your enrollment with all loved ones in agreement! I’m a volunteer with Hospice, serving and participating over nine years. The program is an amazing network of end of life comforts. Your family as well as your father-in-law will benefit from the care and respect Hospice has to offer. Never hesitate to ask your nurse, aid, and volunteers any questions. As the days go by, make sure you flip through the Hospice material because there’s so much the program offer.

Unagi · Post by **Unagi** » Fri Jul 10, 2020 12:48 pm

Just wanted to say my thoughts are with ya. I imagine this is not at all easy, even if it's exactly the right thing, etc.

Post by **ImLawBoy** » Fri Jul 10, 2020 12:51 pm

I haven't been involved personally, but close family friends went through this some time ago when the father was in advanced stages of bone cancer. I don't think it was easy for them, but it's clear to see now (some 18 years or so later) that it was the right decision.

Kraken · Post by **Kraken** » Fri Jul 10, 2020 1:02 pm

To me, home hospice sounds like the best possible way for an elderly person to go. I don't envy your being the caretaker, but applaud your decision.

Alefroth · Post by **Alefroth** » Fri Jul 10, 2020 1:06 pm

My mom was always really independent, living on her own until she was 85 in a different state than I do. A couple of years ago we discovered she had cancer and did not want to go through any treatment. We moved her into my house within a month and she wanted to pursue her death with dignity options. She missed the 15 day waiting period to make another request by a day or two. The pain meds had made her incoherent enough she could not make the second request. We took the voluntary stopping of eating and drinking approach. She had a week of home care, then a week of on site hospice, followed by one more week of home care.

She was basically vegetative for the final week and showed little if any awareness, either from the steady Fentanyl drip she had, or the stage of the cancer, or both. The hospice workers/volunteers were absolutely fantastic at every stage. They were so caring and helpful. Everything they did was full of love for my mom, even if she never responded to them. It was obviously very difficult to see her like that, and to have to perform all of the duties she couldn't do for herself, but I couldn't think of a better outcome with the available options than for her to die peacefully in my house.

The hospice was provided by the local hospital which is Catholic and therefore don't support the death with dignity options, but they were very supportive of every choice we made.

Eel Snave · Post by **Eel Snave** » Fri Jul 10, 2020 1:06 pm

My grandma did this with my grandpa. He was clearheaded until the end, but he got a chance to be comfortable in an environment he knew.

My thoughts are with you, sounds like a tough situation.

Smoove_B · Post by **Smoove_B** » Fri Jul 10, 2020 1:35 pm

Yes. When I was a teenager my grandmother had a terminal cancer diagnosis and after some chemo and radiation, she came to stay in my house in a hospital bed next to my room. I was really only 12 or 13 so I didn't fully grasp the weight of what was happening, but 30+ years later (and having experienced the loss of so many other relatives) it really was a much better option than what I've seen and experienced since - including sudden, unexpected (no suffering) death as well as prolonged nursing home care.

I hope it can provide you and your family with some additional sense of closure. What you're attempting is incredibly selfless and difficult.

Lassr · Post by **Lassr** » Fri Jul 10, 2020 1:39 pm

Holman wrote: ↑Fri Jul 10, 2020 11:59 am I've mentioned that we combined households with my elderly in-laws 18 months ago, and that my FIL (91) has advanced dementia.

It has worked out well as a living arrangement, but FIL's other medical conditions have worsened, and recently more severely. The most difficulty comes from a blood condition (I believe it's a myelodysplastic syndrome) that causes very low blood-cell counts.

For several years he has required drugs and then increasingly frequent blood transfusions to make up the cell count, recently to the point of one every ten days, but they are becoming more and more difficult for him and less and less effective. The doctors have said that now there is really no reliably effective treatment moving forward for someone of his age, and the dementia adds to his discomfort and distress.

This morning I sat in while MIL and my wife met with a program nurse and decided on a transition to home hospice care in place of further aggressive treatments and multiple hospital visits. This decision has been months in coming, and it's one that FIL expressed (prospective) support for back when he was capable of making decisions. What it means is that a nurse will visit the house several times a week to help with pain management and other issues (including, probably, administration of oxygen), but that someday relatively soon FIL will probably die in our house.

It's the right thing to do, but you can probably imagine how difficult it is to make this decision. Implementing it will be hard as well.

Has anyone else gone through this?

My wife just went through this last month. Her mom had Lewy Body Dementia, been diagnosed for about 6-7 years and she had been relative fine up until about 3 months ago. My wife had to call in home health care and the hospice, as her mom's condition very rapidly deteriorated. She passed away about a month after she started hospice. On one hand it was a relief her mom didn't suffer long but on the other we weren't prepared for that rapid of a decline. Going from taking her mom out to eat and shop, to confined at home and pushing her in a wheel chair to bed ridden then death all in about a months time frame.

My thoughts are with you, as my wife says, she wishes no one has to go through that, but people do everyday. It is the best option though.

Scuzz · Post by **Scuzz** » Fri Jul 10, 2020 2:05 pm

We did hospice care with both my father and my father-in-law. Not in our home though, I think that would have destroyed my wife. But there came a time with both fathers when nothing medically could do any thing for them accept make them comfortable. Watching someone die is hard to do, but I think it is often more humane than trying to extend what has become a sad existence.

With my father I don't know if my older brother shares this opinion. He agreed to the hospice care, but after watching how it worked I think it did take a toll on him. Maybe his Catholic religion had an effect on that, I don't know.

I hope the best for you, regardless of how you do it it won't be easy.

Holman · Post by **Holman** » Fri Jul 10, 2020 4:08 pm

Thank you for the kind replies, everyone.

Given FIL's blood condition, it's possible that he might go in just a few weeks. Doing this at home is the way he would have wanted it, but the virus situation now means that doing it in a hospital would mean dying with dementia among strangers. MIL hasn't even been allowed inside the hospital for the transfusions.

MIL and my wife are ready for this (although there has been some crying), but the hardest part will be when the moment comes.

Our boys are 16 and 14, and we've kept them aware of what's happening, but we're going to take advantage of a family visit with a counselor.

stimpy · Post by **stimpy** » Fri Jul 10, 2020 4:15 pm

My thoughts are with you.
Being able to be around loved ones in the final days is a blessing.
My dearest Uncle passed last week from Covid complications.
He had been in isolation for a couple of weeks and no visitors were allowed.
After he passed, I sat with my Mom and Aunt and the decision was made to not have any service for him.
A room full of high risk octogenarians just wasn't the right thing to do. Of course the downside is not being able to say goodbye and comfort loved ones.

Make him feel as comfortable and loved as you can.

Unagi · Post by **Unagi** » Fri Jul 10, 2020 4:18 pm

I attended a Zoom 'service' that had about 25 people in attendance, and it was honestly one of the best experiences I've had for something like that. It was informal, and from the heart - and a lot of people felt more comfortable sharing stories, etc. They made a slideshow to start things off, but then just asked if people had stories to share, etc. It was very human and really kinda nice.

stimpy · Post by **stimpy** » Fri Jul 10, 2020 4:25 pm

Unagi wrote: ↑Fri Jul 10, 2020 4:18 pm I attended a Zoom 'service' that had about 25 people in attendance, and it was honestly one of the best experiences I've had for something like that. It was informal, and from the heart - and a lot of people felt more comfortable sharing stories, etc. They made a slideshow to start things off, but then just asked if people had stories to share, etc. It was very human and really kinda nice.

Thats actually a great idea.
Not sure how practical it would be to pull off and coordinate with technologically challenged senior citizens spread around the country, as I have no experience in setting up a Zoom meeting, but certainly something to look into.

Unagi · Post by **Unagi** » Fri Jul 10, 2020 5:30 pm

stimpy wrote: ↑Fri Jul 10, 2020 4:25 pm
Unagi wrote: ↑Fri Jul 10, 2020 4:18 pm I attended a Zoom 'service' that had about 25 people in attendance, and it was honestly one of the best experiences I've had for something like that. It was informal, and from the heart - and a lot of people felt more comfortable sharing stories, etc. They made a slideshow to start things off, but then just asked if people had stories to share, etc. It was very human and really kinda nice.
Thats actually a great idea.
Not sure how practical it would be to pull off and coordinate with technologically challenged senior citizens spread around the country, as I have no experience in setting up a Zoom meeting, but certainly something to look into.

Oh that was this crowd too. But then that became part of the human feeling of it all... . (Mostly about getting people muted and unmuted, etc.)

disarm · Post by **disarm** » Fri Jul 10, 2020 5:47 pm

I don't have personal family experience with this, but I do see a lot of 'end of life' issues with my work. It's never easy to say goodbye, but rest assured that your family has made the right choice. I've seen far too many families struggle with letting go even when the outcome is inevitable, with the end result of their loved ones suffering through their last days in the hospital (often full of tubes and IVs). Home hospice will give your FIL a comfortable, dignified, peaceful passing, surrounded by the people who love him most. We should all be so lucky when our time comes.

Kelric · Post by **Kelric** » Fri Jul 10, 2020 11:21 pm

After his third bout with cancer my father passed at home, right where he wanted to be, after a few weeks of hospice care. His wife went on to volunteer for that hospice organization for five+ years, until the pandemic hit, out of appreciation. I'm glad he was in his bedroom in the house I spent half my life in (at the time), because I know he preferred that to a meaningless hospital. That doesn't mean it was easy: the last time I saw him alive he asked that I help him get out of bed and with my herniated discs in my back I just couldn't support even his diminished weight. Until my step-mother sold the house last year I would visit his room and think of him every time I was there, which usually led to tears.

To be a cliche, home is where our heart is. If there is no saving me, I want to be at home where I am comfortable. IMO hospitals are for trying to get better, not for dying in.

I hope it goes as well as can be expected for your family, and that everyone can understand if those were his wishes.

Kraken · Post by **Kraken** » Sat Jul 11, 2020 12:51 am

Kelric wrote: ↑Fri Jul 10, 2020 11:21 pm If there is no saving me, I want to be at home where I am comfortable. IMO hospitals are for trying to get better, not for dying in.

So much this.

Suitably Ironic Moniker · Sat Jul 11, 2020 5:24 am

Hospices aren’t hospitals.

Holman, I’m sorry for your having to go through this. Sounds like you all are getting good advice and info and doing what’s best for your FIL and your family. Best of luck to you.

Lorini · Post by **Lorini** » Sat Jul 11, 2020 11:21 am

So my mom, being the money/value focused woman that she was, was dying of ovarian cancer. The night she died, she deliberately sent for an ambulance so she'd die at the hospital. In California, you must tell prospective buyers if someone has died in the house (which is totally ridiculous but that's another story). So that we wouldn't have to tell people that if my brother and I decided to sell the house, she wanted to die at the hospital. Her brother and my brother were with her through the unconsciousness she lapsed into when she got to the hospital so she was not alone.

dbt1949 · Post by **dbt1949** » Sat Jul 11, 2020 2:17 pm

I'm sorry about your mom.
One of the things I dislike about California is their screwed up laws. Every state has screwed up laws but California leads the pack.

Scuzz · Post by **Scuzz** » Sat Jul 11, 2020 3:31 pm

Holman wrote: ↑Fri Jul 10, 2020 4:08 pm Thank you for the kind replies, everyone.

Given FIL's blood condition, it's possible that he might go in just a few weeks. Doing this at home is the way he would have wanted it, but the virus situation now means that doing it in a hospital would mean dying with dementia among strangers. MIL hasn't even been allowed inside the hospital for the transfusions.

MIL and my wife are ready for this (although there has been some crying), but the hardest part will be when the moment comes.

Our boys are 16 and 14, and we've kept them aware of what's happening, but we're going to take advantage of a family visit with a counselor.

I didn't see my FIL the last 6 weeks or so of his life because of Covid restrictions. My wife saw him a few times, but it wasn't easy on her. She would have liked to have visited him every day.

Scuzz · Post by **Scuzz** » Sat Jul 11, 2020 3:34 pm

Suitably Ironic Moniker wrote: ↑Sat Jul 11, 2020 5:24 am Hospices aren’t hospitals.

This for sure. Although when my dad was in a hospice (for only about 36 hours) we were told about a woman who had been there for months and finally sent home. She lived at home for several months before having to return. But hospice care is just about making death a comfortable thing for the dying.

Suitably Ironic Moniker · Sun Jul 12, 2020 12:14 pm

My father spent about 36 hours in a local hospice before he died, and the hospice did a phenomenal job of caring for him and providing a space for family and friends to gather and say goodbye. It was comfortable and my mother didn't have to do anything other than be there for my dad. Of course, he was never conscious while in the facility, so we didn't know his preference, but as he didn't wake up to complain, it worked out.

Exodor · Post by **Exodor** » Sun Jul 12, 2020 12:23 pm

We cared for my first wife in home hospice for about a week before she passed. It was incredibly difficult but a better experience then her spending her last moments in a hospital. We were able to have family stay to help care for her and spend her few lucid moments together. In contrast my mom's second husband was a hospice facility at the end. They took good care of him but it still seemed like he was spending his last weeks surrounded by strangers.

Holman · Post by **Holman** » Thu Aug 06, 2020 6:43 am

My father-in-law, Donald, passed away peacefully in sleep some time last night. He was 91.

His decline had accelerated pretty rapidly over the past week. He hadn't left the bed for six or seven days except to move with help to a nearby seat (and then almost immediately back), and he slept nearly all of the time. He quit eating three days ago.

My wife's brother (a surgeon on the other side of the country) arrived for a ten-day visit last Thursday, and the timing was fortunate. He had not seen much of his dad during the past year, and it was good that he could be here for his last few days.

Donald wasn't speaking very often during the past couple of weeks, but at one point we (just kind of routinely) asked him what he needed, and he said "love" and smiled. This was one of his last words.

Hospice care was absolutely the right choice to make. The nurses and providers gave us everything we needed, and they helped provide the best possible passing.

stessier · Post by **stessier** » Thu Aug 06, 2020 7:14 am

I'm sorry for your loss.

LordMortis · Post by **LordMortis** » Thu Aug 06, 2020 7:48 am

Lassr · Post by **Lassr** » Thu Aug 06, 2020 8:23 am

Sorry for your loss. Just know you gave him the best in the end and he left feeling loved. A good way to go.

malchior · Post by **malchior** » Thu Aug 06, 2020 8:30 am

Sorry for your loss. Glad it was peaceful.

Unagi · Post by **Unagi** » Thu Aug 06, 2020 8:33 am

Honestly. Not sure if it’s just how you’ve worded things, but that sounded so touching and peaceful. A very nice way ‘to go’ .

Sorry for your and your families loss.

dfs · Post by **dfs** » Thu Aug 06, 2020 8:48 am

Glad your comfortable with your choices. That's the best we can hope for in times like this. It sounds like you did well.

Baroquen · Post by **Baroquen** » Thu Aug 06, 2020 10:15 am

I'm sorry for your loss.

Kraken · Post by **Kraken** » Thu Aug 06, 2020 10:26 am

Condolences. You allowed him to have the best death one can hope for, and that's an accomplishment.

Blackhawk · Post by **Blackhawk** » Thu Aug 06, 2020 10:45 am

It's always a tragedy when people lose someone, and you have my condolences. And yet, as others have said, it was beautifully and lovingly handled. I hope I'm so lucky when my time comes.

MHS · Post by **MHS** » Thu Aug 06, 2020 12:52 pm

Very sorry for your family's loss.

Daehawk · Post by **Daehawk** » Thu Aug 06, 2020 1:00 pm

So very sorry for you guys.

Eel Snave · Post by **Eel Snave** » Thu Aug 06, 2020 1:27 pm

I'm so sorry for your loss, but having "love" be one of your last words sounds like the way to go.

AWS260 · Post by **AWS260** » Thu Aug 06, 2020 1:52 pm

It sounds like he was surrounded by a lot of love in his final days. My condolences to your family.

Scuzz · Post by **Scuzz** » Thu Aug 06, 2020 2:10 pm

I am sorry for your loss but glad you could make his last days better for him.