You sound like an amazing DIL for being willing to take this on.
First two things that come out at me. 1) If your spare bedroom is upstairs, and I think I remember it is, then that may become difficult if he is in a weakened state. I don't know what kind of cancer he has, but if he's short of breath, or dizzy/weak, etc., it could be difficult, eventually, for him to walk up the stairs. There could also be falls if he's in an unfamiliar place and you might have to install handrails in the hallways and bathroom, or is there room for a walker, etc. Just things to think about. And 2) You probably don't need to worry too much about doctors as once he enters hospice care, their doctors take over. One thing I didn't realize (and this could vary by location) is that time for hospice is once active treatment ceases. If someone is still pursuing treatment, then they can look into Palliative Care. If it's palliative care, and he is still undergoing treatment, then he would need a care team near you (which shouldn't be too, too difficult if you have a good cancer center near you; the transfer of care is not unusual in these situations).
Agreed that a lot depends on what he wants to do. I love how you explained it, i.e. that he might not want to feel like a burden or have to have all of you assist him or see him deteriorate, etc. Some people are proud like that. So it will just depend on how he feels about it. And don't underestimate how his own experiences with this, or even stories he's heard, may affect his decisions.
I am a longtime RN who recently cared for my own mother at home through her illness and hospice experience, etc. My primary support with her care was my daughter who was in nursing school at the time, and is now an RN, so we were fortunate that way. We also had two other family members here help as needed when they were home. Mom had lived with us for almost 25 yrs in an in-law apt so she was home. But you are right about it being easier on
you when they are right there. This is one of the reasons she came to live with us in the first place.
Anyway, the decline was tough, as she was always independent and proud. There were multiple falls, and a fractured hip which overshadowed a lot of her enjoyment of the some of the last good days of her life - which we didn't realize they were at the the time - sadly enough (with our finding out her cancer had spread during the hip fiasco). But even in her own apt we eventually couldn't use her own bed when she became increasingly dependent on us for care. She was relatively small, but trying to get her up out of bed in the morning with dead weight when she could no longer move herself became backbreaking, and many days I was by myself. I fought getting a hospital bed (mainly out of sentimentality - with a healthy dose of that means we're nearing the end) but eventually I had to give in, and that helped (given the bed went up and down, the head could be raised, and the mattress was washable). Same with a lift. We put the bed in her living room where there was more space for us caregivers to work, and she could see life outside the window and have room for visitors, etc.
I say this with many, many years of taking care of patients - it was one of the most difficult jobs I have ever taken on, as she got more and more unable to do anything for herself. We had to feed her, toilet her (sometimes with enemas on a bedside commode using a lift), change her, clean her up, wash her up and change her clothes, nurse her through pneumonias and UTIs, change dressings, Foley catheter care, turn her every couple of hours when she became bedbound, you name it. The last few days were especially tough when body functions let loose. (Man, those situations are much less difficult in a facility with a care team and proper equipment to do the job. Sorry for the graphics but it seems this is what you wanted to know.) But I'm glad we saw it through. I think the only reasons we were able to do it was because we had the knowledge, and had other support at home, including helping hands, and equipment we'd either bought or hospice had arranged for us to get, otherwise we would not have been. We did all her care, no outside help, 24/7. (And all of us either still working or in school, etc. Aides through hospice could not be scheduled on a regular schedule - they show up when they show up, and I couldn't have that with my own schedule, so that's mainly why we didn't use hospice aides.) We did have a hospice team where nurses visited once a week, then more often toward the end. They were a good support for me, personally, but the hands on care still fell to us. They assessed the situation to make sure she was being well cared for, checked her vital signs, made medication recommendations, checked wounds, talked to the doctors, counseled me on aspects of care I was unfamiliar with, remained on-call when I needed them (which I did a few times in the middle of the night), etc. I think the situation was sort of unusual for them, too. One of the nicest features of hospice I found was getting meds delivered in an emergency up until midnight, same with equipment. For instance one night we needed a suction machine and they delivered it at 9pm. And nurses keep a lot of supplies in their trunks, lol. That really helps when you need things at home.
I've noticed there are some companies around that also help provide care to elderly at home if you look. Not sure if they take on medical situations but it's worth looking into. We also had someone we trusted who would stay with Mom if we had to go out and no one else would be home.
I did choose a hospice group that was associated with a hospice facility in case I thought she needed to go there toward the end, but again, I felt in many ways it was easier to have her home than it was to have to travel daily to a facility with my crazy schedule and such. And this was before Covid - not being able to see her and at least help take care of her would not have been an option for me. She had a tough life and I wanted to give her that gift at the end. She would've absolutely done the same for me, or anyone for that matter, were the tables reversed.
My take, from what you have written, is either an independent living or assisted living with hospice option near you, depending on his condition and ability to care for himself, OR coming home with you for as long as he is safe and you are able to manage there, with an option to move to a hospice facility when his needs for care increase. It's a blessing there aren't financial worries. But I know there are also now concerns with Covid for patients in facilities. So it can be a tough decision. My kids were older, but they assisted their grandmother for many years prior to her decline, as well as saw it through to the end (it was actually my son who was there with my for one of the toughest days we had with Mom, and I was proud of how he did what needed to be done with little fuss) and I think they were the better for it. Of course, being a family with nurses it's sort of second nature for us, so that could be different, but if you discuss it with your kids and they're open to helping, then I think it can be a life-changing experience. We are still in the grieving phase. I can't think of many regrets, though. Mom was peaceful and comfortable, and that was the main goal. Hope this helps. Feel free to PM me if I can help.
