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View Full Version : Hospice vs big interventions - when the end draws near



robinsmommy
02-28-2019, 12:39 AM
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
02-28-2019, 12:51 AM
Iím 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 didnít want to talk about it). FIL didnít 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
02-28-2019, 08:46 AM
So sorry for this difficult time. Only thing I want to add is to make sure you understand what Hospice is and what it isnít. 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. Itís 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 itís the end. They sometimes offer respite care where theyíll stay with the patient so the caregiver can get a break. Iíve heard people complain about their bad hospice experience and itís 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 arenít as certain just how close to the end you are. Days, weeks, months. Without a feeding tube it canít be months.

((Hugs))


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mmsmom
02-28-2019, 10:15 AM
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
02-28-2019, 12:59 PM
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
02-28-2019, 01:50 PM
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, itís up to her. Fingers crossed that she is clear again today.

pharmjenn
02-28-2019, 08:35 PM
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
02-28-2019, 08:43 PM
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
02-28-2019, 11:29 PM
We had hospice for my mom, in her retirement home.

Hereís some info, though it may differ from state to state. https://www.woodtv.com/community/partners/hospice-of-michigan/the-truth-about-hospice-care/1779515154


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pinay
03-01-2019, 02:03 AM
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.

robinsmommy
03-02-2019, 01:54 PM
She is home and has been admitted to Hospice. I guess we just ride it out and see what comes. It was a real flurry yesterday to get everything ready for her, and I can see already that it will be challenging to keep our house running and take care of her, but I think/hope my girls will surprise me there.

I have mixed feelings about DH being an only child at this point. We donít have to deal with a sibling having a hard time respecting her wishes and letting go, but we do have no one to share the burden with. Some of the family in the old country is questioning her decision and our support of it, but they are not here seeing how frail she has become. I think they really are just having a hard time letting go of the last of her generation on that side, a favorite aunt.

I hope she rallies enough to enjoy some company and a last small glass of wine or beer.

StantonHyde
03-02-2019, 09:42 PM
This is typical--everybody who is not actually seeing the person questions the decision. You have to respond to her because she is competent to make this decision, and what you see in front of you. She is NINETY YEARS OLD. They need to let.it.go. God bless her. She will have lived an awesome life and it is ok to go without undergoing hellacious interventions in the last few weeks/months of her life. This is all about quality, not quantity.

I do feel for you--its not easy having somebody in your house. Good luck!!!

DualvansMommy
03-02-2019, 10:09 PM
She is home and has been admitted to Hospice. I guess we just ride it out and see what comes. It was a real flurry yesterday to get everything ready for her, and I can see already that it will be challenging to keep our house running and take care of her, but I think/hope my girls will surprise me there.

I have mixed feelings about DH being an only child at this point. We donít have to deal with a sibling having a hard time respecting her wishes and letting go, but we do have no one to share the burden with. Some of the family in the old country is questioning her decision and our support of it, but they are not here seeing how frail she has become. I think they really are just having a hard time letting go of the last of her generation on that side, a favorite aunt.

I hope she rallies enough to enjoy some company and a last small glass of wine or beer.

Sounds like youíre doing the best you all can at this point. I would seriously tune out the naysayers, especially if they are from long distance away. DH dealt with it on his end from his aunt/brother who doesnít see his mom/my MIL as often we do because weíre 10 mins away. Sheís 90 like your MIL as well.

Just take it a day at a time. Itís all you can do at that age/fragility of life. Good luck.


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Kestrel
03-07-2019, 01:55 PM
A few words of advice from someone who's been there recently...

For out-of-the-area family - we made videos. Some showing him talking about his wishes/preferences. Some telling old stories/family history. It was obvious how frail he was in video.

Our social worker set us up with a care coordinator. We gave her all of the various insurance info - medicare, part B, long-term care, short-term care - and she handled all of the bills! Eight weeks of hospice care with 18 hour a day caregivers, and she juggled the insurance to pay the vast, vast majority of it. (I think we ended up paying a bit over a thousand dollars.) She also recommended three caregiver companies for us to interview... I like that they didn't just say to use a certain company. She was great. Her fees were a little high, but I think that she saved us at least that much. And not having to worry about bills during that time was a blessing.

The hospice people were great, but you have to _ask_ for what you need. We ended up with a hospital bed that was a great help. The are great about the meds if you ask... we had side effects with one, we had a conference call with hospice, family and caregiver and the tried something else that worked much better. When the pain meds made him loopy, they changed it to a liquid med we could scale up and down for pain control, so long as we kept careful records.

Most of all - talk to her. Have her tell you all about her growing up, family, things she saw/experienced.. you'll never get another chance.

StantonHyde
03-08-2019, 10:41 AM
The videos are a great idea. That is one way people can see how frail the person is or hear from them that these are their wishes. When MIL's short term memory wasn't good anymore, I made sure to ask her about growing up and high school or nursing school, etc. All that stuff she could remember. And I coached my kids to do the same. It was fun hearing the stories.

Kestrel
04-19-2019, 01:11 PM
Just wanted to let you know that we are thinking of you. Strength to you and yours in this difficult time.

mom2binsd
04-27-2019, 01:54 PM
I'm an SLP and work with geriatric patients just like your MIL. At 90 given all the other health components I would usually counsel against a feeding tube. It's uncomfortable, can get infected, is a foreign tube in the body etc. I'm not sure how severe her swallow skills are, but they may be able to alter her diet to make it safer to consume "comfort/pleasure feeding". I'm so sorry that your family has to make these decisions, it's always hard to let go and our instincts are to do everything possible, but the outcome is not always going to be what you want, and prolonging things can be very painful/emotional. Please PM me if you have specific questions, but asking for a speech pathology consult to discuss diet safety would be appropriate.