Back again about mom. She’s 85 and has been in AL for 6 years following quadruple bypass. She has CHF and end stage COPD. She is the worst case her pulmonologist has ever seen and he truly can’t understand how she is still alive - he’s been saying this for 3 years.

She has declined over the past year - to the point she was mobile in her apartment but limited and only with her roller and 3L O2. She stopped being able to shower herself And was releasing her bladder in bed and her depends because she didn’t want to get up.

She ended up in the hospital 4 weeks ago with pneumonia and was told she had a small heart attack the week prior. Pulmonologist said ‘this is it’ ... I prepare yet again for the end but I really should know better because after a week of heavy antibiotics she was discharged to rehab.

She's been in rehab about 3 weeks and while she’s made some progress she seems to be at a very new baseline. She can not get up herself or move around without 2 person support. She is totally incontinent and says she can’t urinate on a toilet anymore and doesn’t understand why that is not ok. She sleeps most of the day and has made some statements I know are untrue. She says she wants to get back to AL and is ‘working hard’ and that ‘she doesn’t know what is wrong with her body’ and thinks more rehab will ‘fix’ her. I truly don’t think she can acknowledge she has a severe, degenerative disease.

We had a care meeting the other day and I made a comment that she really seems to be struggling and needs so much assistance (which they are honestly having trouble providing) that perhaps palliative or hospice may be an option in the future. The nurse, rehab, pt and ot all said no way - she is making progress and is improving and made me feel like I want my mother to die! Ugh. I AM tired - I’ve been her sole support for the past 10 years but I just what the best care for her.

Has this happened to anyone else? My husband says they will try to keep her there as Medicare is paying and then she could do self pay if needed. But if she can’t go back to AL, I think I need to find another place as even as great as this one is it’s not something for ever.

We had a bit of oddity in this scenario. My dad was in rehab following a hospitalization, seemingly making little to no progress. He’d say he was trying, but it was obvious that there was no “try” left in him, his body and spirit were just worn out. The facility held a few conference calls with us, suggesting ever so nicely that if they couldn’t document progress then he couldn’t be kept. While we were only doing window visits it was very obvious the facility was quite low on patients, entire halls were dark day and night. So when it was decided for dad to come home on hospice, the facility staff acted shocked at the decision, just couldn’t believe we were “giving up” My dad was mostly acting on the advice of his doctor, along with being just tired of it all. He died in less than a month. But the rehab facility acting all concerned with him choosing to leave, right after suggesting he was likely to be kicked out for lack of progress—things that make you go hmmmm.....
I’m sorry you’re in this place with your mom. Trust what you think is right. Sometimes the experts have other motives
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Reply to Daughterof1930

Hubby has a point, because with all the rehab Mom is getting she is a bit of a cash cow for them, as I tease my friend whose doctor makes her get every test in the book when, at 77 she has decided she won't be treating anything they find. But there are some things hubby is missing here.
You seem to indicate Mom herself isn't ready to say she is exhausted and hopeless and wants to be allowed to go to her peace now.
You indicate that her caregivers aren't ready for her to either. I will tell you, as a nurse, that we are trained to listen to the PATIENT and no one else. No matter their struggle or their condition. While they struggle on we will struggle with them.
When the patient says they are done, we go to the doctors. Ask if indeed the end draws near. Or is it only depression.
The family, in all truth, gets last say in all this.
I will give you a short story about a patient who taught me the be all and end- all on this subject for me. He was a priest, long paraplegic and now bedridden with the deepest and most appalling to the bone bedsores I ever dealt with. Because the odor was so overwhelming two nurses, all suited up, went in together to care for his wounds, and for him. We were one another's support. He was so gentle, so kind, so uncomplaining.
At one point I ended outside his room against the wall, raging against the God I never believed in anyway. I was weeping and saying "If there is a God how could he let this happen to this good man; why doesn't he TAKE him".
Next time we went in the room, and as we were leaving, the Priest, who had just had pain medicine said "If this knocks me out could you wake me up at 9 pm? " We said sure, we could, but why? He said "Quincy comes on at 9. I love that program". Remember that old program about the coroner? HE wasn't begging to go. I was begging for him to go. He was OK with staying longer. Quincy was on. I never made the mistake again of interjecting my own feelings, fears, pain onto when another "needed to go".
Let Mom lead. She will let you know when she is ready. It doesn't matter if it is denial or what it is. I am with you. This is awful to see and suffer through with her. I think hospice is the best blessing there is. I was ready YESTERDAY. But some will fight to the end. I am a member of Final Exit. I wish we all had choice in when we can die, and with what ease.
My best to you and to Mom. And I am so sorry for the suffering you both have. Honor her courage; honor the courage of those who care for her. And me, as a taxpayer? I am happy to pay!
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Reply to AlvaDeer
FullCircle Aug 13, 2020
Thank you. This is spot on and honestly hard to accept. I love my mother dearly and want her to be happy but I’m just so tired of taking care of everything for her for so long. I work full time, have 3 kids and a life and we have no other family to assist. Everything related to her falls on me. She CAN do more - or at least she could have until last year but I always thought she was dying so I totally babied her and did more than I should. It was fine for the first few years but 8 years later I’m just worn out.

She has been in and out of the hospital many times and each time I’m told this is it and I prepare myself and accept it and then she recovers - which is wonderful but just an awful rollercoaster. I stopped even talking about her to my colleagues and friends because it’s just the same thing over and over where she is super sick, going to die, I’m a basket case and then she recovers. I tell myself the next time I will be calm but can’t - she’s my mom!!

I think maybe the worst part is that I am ready but she is not and that is simply the most awful feeling in the world. I sincerely hope when it is my time - it is fast.
One thing I learned from my g-ma's death was that the rehab facility she was in were so POSITIVE that they could get her up and walking and playing cards and back to her condo!! Perky beyond endurance--some of those SW were. Drove me nuts.

Gma was in the NH because she was actively dying and wanted to go. The happy go lucky chatter from the staff just angered her. She couldn't feel her hands and feet, she couldn't move without 2 person care and she was only about 90 lbs at the time she died.

Instead of allowing her to embrace the inevitable passing--they harangued her day after day to try to get up and walk, etc. She wanted to be left ALONE and full of pain meds and tranqs.

I finally had a 'come to Jesus' with gma's care team and asked if they would PLEASE give her the dignity of a quiet death. I remember saying to one nurse--"have you SEEN the open wound on her tailbone? It goes clear to bone. It's excruciating. Every time you make her get up, she cries. WHY are you pushing this activity". No answer--said it was protocol.

I wasn't her representative, Mother was. I told Mother to step up and be forceful with the staff. (This was years before I'd ever heard of Hospice). Finally, a couple of days before she passed, they did start round the clock pain/anxiety meds and she did pass quietly one morning, a couple of days into Hospice.

And yes, we were getting reports daily that she was improving. Well, maybe, but swallowing a sip of coffee or a mouthful of oatmeal is hardly 'progression' when the person cannot move themselves at all.

Do you want to go through the headache of moving your mom at this point? If so, go for it. With COVID, you may move her and find you cannot visit her.

In my experience, you have to ASK very firmly for palliative or Hospice care. Drs are in the business of keeping people alive as long as they can. Very few will compassionately bring up EOL options. (Just my experience).
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Reply to Midkid58
FullCircle Aug 13, 2020
that’s the hard thing. On paper there is no way she should be alive so while I do think she is ‘dying’ (and will not be at all surprised when the call comes), I also know that she could live this current existence for many more years. It just makes me very sad.

She is not happy but does seem content and is convinced she will get better so perhaps Hospice doesn’t make sense. I have just heard the care and support can be helpful and during this current state where I can’t go in and visit her I think that would be nice.
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