Hospice vs big interventions - when the end draws near

[robinsmommy]

MIL's health has been getting frailer and took a turn for the worse on the weekend - she's 90. She is in the hospital now, and when we talked to the doctor today and the cardiologist, neither had good news. She has lost her ability to swallow, and it is either a feeding tube/heart surgery/figure out swallowing issue/rehab or Hospice. She was pretty lucid this morning and was leaning toward the latter - she has gotten a lot weaker and is in reality probably not up for all of the fixes needed and rehab. I lean toward Hospice as well, but since she is able to make a choice, we'll support what she wants. We told the girls tonight, and are still processing the news ourselves.

Those of you who have been here - lay it on me, please. Any advice in any area is welcome - bucket lists, insurance headaches, putting things in order, helping kids cope - anything that might be useful. We'd ideally like to have her get Hospice in her unit at the retirement home. We are feeling overwhelmed and unsure of what the next few weeks/months will bring. Hearing from those who have been there would be most appreciated. Books that are useful in our situation would also be good to know about. Thank you.

[georgiegirl]

I’m so sorry your family is going through this. FIL had home hospice at the end. (He did go to the hospice center for a few days at one point, but he really wanted to die at home.). Hospice brought a hospital bed, a walker, and the nurse would help with pain meds. Everyone was amazingly nice and supportive. They have lots of resources for families.

ETA: we told our kids when we knew FIL was terminal. He ended up living about two mo longer than expected and ds1 (who was around 6 at the time) kept asking when FIL was going to die. Dd was 9 and understood better (sad but didn’t want to talk about it). FIL didn’t want the kids to see him at the end so he has said his good byes during his last burst of energy a couple of weeks before he passed.

[nfceagles]

So sorry for this difficult time. Only thing I want to add is to make sure you understand what Hospice is and what it isn’t. They stop by once or twice a day. They help train families to care for the patients in their last days so they can stay home. It’s not really continuous nursing care like many think. They bring in equipment, show you how/when to give meds, answer questions and help you know what to expect and when it’s the end. They sometimes offer respite care where they’ll stay with the patient so the caregiver can get a break. I’ve heard people complain about their bad hospice experience and it’s usually the result of inaccurate expectations. Your MIL is in a retirement home but is she receiving nursing care or is it just assisted independent living? I bring this up because it sounds like you aren’t as certain just how close to the end you are. Days, weeks, months. Without a feeding tube it can’t be months.

((Hugs))


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[mmsmom]

Swallowing issues are so common in the elderly. My Dad had dementia and in the end was unable to swallow. Feeding tube was not an option as apparently you can still choke with a tube. Thankfully he had a living will that indicated his wishes although in our state there was another form required that my mother and I had to fill out using his living will as a guide. He was in an assisted living facility and hospice came there. He had been put on “honey consistency” food as his swallowing deteriorated. The next step was “pudding consistency” and for whatever reason that would have required moving to a skilled nursing facility. Thankfully we were able to avoid that and in the end he lived about a week after completely not having any kind of nutrition.

Do I would ask doctor what the potential outcomes of each option would be, what kind of quality of life would each provide. Also make sure her facility is involved in addition to hospice and clear about what they can or can not provide.

[StantonHyde]

I just read a brief abstract from a study of cancer patients. Patients who died in hospice/at home had better "deaths" than those who died in the hospital AND their families had much lower rates of developing major depressive symptoms after their deaths. Hospice isn't withdrawing care, it is just giving care differently. I agree, you do need to know what hospice entails--e.g. you can't take MIL to the emergency room because she looks sicker (happens all.the.time. to DH, the ER doc). I think you can ask about in home nursing options. Also, there are "hospice hospitals" for people who are on hospice but need more help with daily tasks/care than their family can provide.

Honestly, at 90, there is no way I would be doing surgery--no way. And I don't know about the feeding tube--infections, complications, etc. 90 is a good, long life.

[robinsmommy]

OP here- headed to hospital in a little bit, hope to get more information then, but all you have shared is helpful. I agree on the surgery at this age, but if she is lucid enough to make an informed decision, it’s up to her. Fingers crossed that she is clear again today.

[pharmjenn]

OP here- headed to hospital in a little bit, hope to get more information then, but all you have shared is helpful. I agree on the surgery at this age, but if she is lucid enough to make an informed decision, it’s up to her. Fingers crossed that she is clear again today.

The hospital should be able to have the Social Worker discuss options with your MIL and the family, and provide information about different companies in your area. Most all my elderly family have chosen hospice care at the end of long illnesses, and had good experiences.

[NCGrandma]

OP, you mentioned that your MIL lives in a retirement home of some sort. In addition to the info that the hospital social worker can provide about hospice options, be sure that you all know what support the retirement home can provide, whether or not they can work with hospice in her current unit or if there are other units that offer more care, etc.


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[MontrealMum]

We had hospice for my mom, in her retirement home.

Here’s some info, though it may differ from state to state. https://www.woodtv.com/community/par...are/1779515154


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[pinay]

If the hospice care won't be in the home, you need to make sure the facility she's in has a license to do hospice care.

One thing my BFF (she's a doctor) warned me about with hospice was that they often leaned towards more pain meds than not, which obviously is done for comfort but can also impact the person's ability to communicate. My dad was on home hospice for a month before he passed and he really didn't like the way some of the pain meds made him feel so we did lower dosages than recommended by the nurse who was visiting regularly.

I felt that we got a lot of support during our time with home hospice (my parents have Kaiser Permanente HMO for insurance). Minimum once a week visits from the nurse, but they would come more frequently upon request. They helped us find respite care (we had to pay out of pocket for that, but it was worth it for the temporary relief we would get while the caregiver was there), and we were also set up with volunteers who could run errands or simply just sit with my dad so that we could take breaks.

My kids are 11 and 6, so we talked to them about the situation with my dad as it evolved. My oldest could understand on a much greater level than my younger one, and it was really hard on her emotionally. I was so worried about how my 6 year old would handle it, but I got some great book recs from a friend who recently had to deal with a similar situation. The books gave us ways to talk about my dad getting sicker and that he would eventually pass away, and what different faiths and cultures believe happen after we leave this world, and I really think it helped. I think out of all of us, she is the one right now who can talk about her feelings most openly and express how much she misses him, that she thinks of him, etc. It's been less than 2 months since he passed, but I think both of my kids are handling it pretty well.

I'm so sorry that your family is going through this... it's so hard to know how to handle everything and it can feel so overwhelming. Hopefully if there are assets she has a living trust and a will in place- otherwise, try to make sure everyone knows what her wishes are to prevent any issues coming up later.