Follow the bouncing ball

forbarbara

MIL is in MC with dementia. She was in Hospice but was discharged because she had stabilized and was doing fairly well. Now MC asked us to bring Hospice back. Because MIL is declining at a rapid rate. MC cited mobility problems, loss of appetite and severe confusion. I have seen all of this myself. (No UTI)

Two days and a million phone calls later I met the hospice evaluation team at MC. MIL was pretty lucid and had started eating again. She hasn’t been this clear in many months. I made sure the hospiteam talked to MC about MIL’s typical level of confusion. They’ll likely find her ineligible and we’ll go through this all over again in a few months.

I feel robbed of the joy in having MIL back again for a day, and am filled with frustration. Instead. Advance ce on finding balance?

mommyandme (m&m)

I understand the rollercoaster.

My mom was on hospice for 1.75 years then they discharged her. Even though she declined to a 7d in that time she was “stable” … even though she was no longer mobile, she was “stable” and the thought was she could live like that for quite awhile. Nothing more they could do that I wasnt doing. I was pretty bummed. We ended up buying all the equipment from the company hospice contracted with cause changing beds wasn’t a productive option. For two months we muddled along without hospice’s help. Then covid struck our home. She wasn’t going to come back from it. I was begging hospice to come ASAP cause after her day long stabilization hospital stay, she was coming home and I needed their support for her ultimate transition. It was a fuster cluck to say the least. I know they had to discharge us, no one expected her to succumb so quickly to covid, of all things… I felt horrible that they left us but at least they helped me some in the end.

Anything can make our LO decline suddenly…loss of sleep, dehydration, hunger, constipation, ineffective meds, infection, pain etc…and when those things are cleared up, they may bounce back. “One step forward, two steps back” was my take on things. When there was a new behavior, decline etc…that didn’t improve I would go to the “accept and adjust” mind frame as soon as I absorbed the new reality…(hopefully sooner than later) which we must do often on this journey. Finding balance?…hmmm… being flexible, finding humor, taking time for yourself… is balance even a thing? Seems one sided most of the time…caring for our LO…I was leaning to one side or the other most of the time… ha…ha…”oh, here comes Jen, you can tell because she’s walking to one side” (that’s suppose to be funny).

Anyway, hope you can find some peace and “balance” as you move forward. This is just a hard road no matter what. Hope your MIL has some quality time with you for however long that’s possible. And I hope your MIL gets the support she needs from hospice.

forbarbara

Thanks - that helps. Love your humor

ButterflyWings

LOL m&m, I know just what you mean. Same here! They'll spot me from a mile away: Bent over backward and leaning to one side.

forbarbara I would try a different hospice if you can. That's what is often recommended here as they all seem to have slightly different criteria. It worked for us when DH was discharged for gaining weight (because his AD progression includes not knowing when he is full anymore, so he will eat anything at anytime) Anyway, he was readmitted the very next day I think, by a different hospice co and just in the nick of time since he was not stable at all.

At late stage 7, that seems like your MIL would definitely qualify. I guess they are saving money since she at least has some support and services in a facility but if MC is asking them to come in, can't their doc do the eval and just order hospice?

forbarbara

Butterfly wings, small town only one hospice. They’ were really helpful the first time. I think maybe the evaluation team was new. (They looked so young - but these days everyone seems young to me!) The good news is the MC already asked for another look so Hospice is going back this evening.

I know this sounds awful but if she’s on hospice there won’t be well-intentioned staff trying to prolong her life. I know for a certainty that’s not what she wants.

ButterflyWings

It doesn't sound awful at all.

mommyandme (m&m)

Any luck?

forbarbara

No luck, m&m, but thanks for asking. We’re just going to stay the course for now.

forbarbara

Help!

MIL in mc falls a lot. She keeps forgetting she’s in a wheelchair and tries to stand up to walk but doesn’t have the strength to do that. Twice now they have sent her to the ER to make sure she hasn’t broken anything. First time no problem and I took her back to mc. This time they admitted her because her potassium was low and she needed electrolytes and they want to boost her nutrition.

I don’t want any of this and neither does she. Last spring when she was more alert she refused similar treatment for hydration and nutrition. Her legal docs and directives are all in place. I have the POA and can stop the treatments. But if I take her back to mc against hospital’s wishes can mc refuse to take her? She came into mc on hospice but then improved and was discharged from the program. Is she were still in hospice this wouldn’t have happened.

any advice?

harshedbuzz

Leaving the hospital AMA could result in her insurance denying coverage for the visit.

If she's on hospice, can you invoke a "do not transport" order?

forbarbara

harshedbuzz what’s AMA?

mommyandme (m&m)

https://alzconnected.org/discussion/comment/181048#Comment_181048

Against Medical Advice

forbarbara

Duh. Thanks!

forbarbara

It turns out her advanced medical directive - in Maryland it’s called a MOLST - was pretty clear but wasn’t being followed. She’s being discharged and I now have the tools I need for next time.

thanks all for your support.

forbarbara

Hospice is doing a recertification on my MIL tomorrow. They called to tell me she’ll probably be discharged. They got her back on Hospice 3 months ago based on her weight of 75 pounds. She has gained weight and now weighs a whopping 80 pounds. Too much.

In some world this makes sense — but not in mine.

harshedbuzz

@forbarbara

Good luck today. I hope your suspicions turn out to be unfounded.

HB

JDancer

Glad you have clear advance directives in place, sorry they weren't being followed. Here in Indiana we have a POST (physician order for scope of treatment), It clearly spells out what to do and not to do.

For those of you that have living wills, take a look at them. IMO, most are worthless. They use terms like, "if I am unlikely to recover."

End of life is difficult. There's no shame in choosing comfort care over life extending treatments.

forbarbara

https://alzconnected.org/discussion/comment/189224#Comment_189224

Thanks. No luck - she’s discharged. But she’ll be fine with MC services. At this point she won’t know the difference. But she’ll have to change wheelchairs and I’m waiting to see if that stresses her out.

ButterflyWings

@forbarbara we went through this and it was unnecessarily stressful. A different hospice team evaluated DH and enrolled him within 24-48 hours of his discharge from the initial one. And he is still receiving services from the 2nd one.

I may have missed this earlier in your story, but can you get her evaluated by another hospice agency or two?

forbarbara

https://alzconnected.org/discussion/comment/189461#Comment_189461

Small town, only one hospice agency. They have a wonderful social worker who will answer my questions whether or not we’re an official hospice family. So I still have a connection there, and MC wants her back in too. Meanwhile we just got notice of a 7% rent increase in January. Sigh.

SusanB-dil

@forbarbara dang... you nor none of us needs that extra stress!