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Mom had a mini stroke about 4 weeks ago and has declined since then. She fell this past week, landed in the ER, but had no broken bones or concussion. But she is weak, thin, and cognitively declining. She is in stage 5/6 ALZ. She has been falling an average of once a month for the past three months. Assisted living is doing everything they can to help, but they obviously can't prevent everything. She was getting physical therapy, but the therapist is thinking about dropping her as a patient because she has little motivation to participate, and they are having a hard time getting her to go to physical therapy (she is in assisted living.) She is usually in bed sleeping whenever I visit. The one therapist told me she is beginning to show signs of "failure to thrive." My dad also has Alz and is in the same stage as her. He is extremely anxious when she is gone (at the ER), so when she passes away, I believe he will too. Any thoughts or suggestions. It's heartbreaking to watch their decline.

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Straight up? It’s called life and your parents are at the end of theirs. It’s an inescapable fact. Dont waste time resources and money on prolonging this stage. All they need is to be made comfortable. Warm. Loved best wishes
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Decline is difficult to watch. But unless we die of a catastrophic event, it is the norm. What you are experiencing and have laid out above so very well is exactly what you labeled it, a "failure to thrive".

You can put this another way. All systems are aging. Everything has a life, from our electric toothbrush, to our own bodies. They fail in various ways as the systems run into problems.

Your Mom's own medical practioners are your best guides in all this. There is no prevention for it. It is something you work WITH, something you work AROUND the best you can, adapting the best you can.

I am so sorry. But know you are not alone. This is quite simply "what happens". I am 81, so both as an old retired RN, and on now a very personal level I can tell you "This is what happens". I wish you all the very best of luck dealing with things as they come along, the best you can. It is all any of us can do, because as dear old Dr Laura says "not everything can be fixed". And what can be fixed we try to patch up best we can.
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Forsuchatime Oct 2023
Thank you for your post. It is helpful to read, even though hard.
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Do seriously consider placing your mom on hospice. At least start looking at different organizations.

They aren’t all the same and it’s important to make sure that you are receiving the best fit for your needs.

Time and time again, I heard from my mother’s nurses that they saw families waiting too long before they called hospice in.

Please know that hospice can be discontinued at any time if needed. Don’t hesitate to switch to a different provider if you aren’t satisfied with the one that you chose.
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When my 100-yr old Aunt (with mod/adv dementia) shimmied out of bed in her home and broke her hip, we opted to not do the surgery because we knew she wouldn't cooperate with anything, plus it'd just be too hard on her. She was getting PT nonetheless in order to be able to pivot on it, but not really cooperating with that, either. I was getting ready to interview MC or LTC facilities and was worried that she'd just be getting up out of her seats/bed and fall over and over. She mercifully passed in her sleep at rehab, possibly from a clot.

I was going to try to get her assessed for LTC but it's tricky when they're not really profoundly ill and still mobile. With your Mom failing to thrive and getting out of bed less and less, maybe consider a discussion with her doctor to see if she'd be assessed for LTC -- which at least is covered by Medicaid. I wish you peace in your heart on this journey.
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NeedHelpWithMom Oct 2023
When my mom hit a certain age and she was suffering from a rotator cuff issue and knee pain, her doctor told her that at her age having any kind of surgery was out of the question. She wasn’t a candidate for surgery for knee replacements or shoulder surgery.

My husband had surgery on both of his shoulders and I saw how painful it was for him, plus the aggressive physical therapy that he needed afterwards. My mother would have never been able to endure that in her 90’s.

The solution for my mother was to participate in occupational and physical therapy which does help with the pain.

Not everyone is able to do physical therapy like my mother was in her 90’s.

At some point, everyone reaches a point in time when they are no longer able to participate in therapy. They generally go on hospice and wait for the end to come.

Our bodies wear out as we age. I know for a fact that mom didn’t want to live as long as she did. It’s sad when our quality of life goes down so far that it becomes a hardship to still be alive.

It broke my heart to see mom suffering with her Parkinson’s disease and her shoulder and knee pain.

Whenever she did express discomfort I knew that she was hurting because she wasn’t one who continually whined about being in pain.

I don’t think that I want to have the longevity that my mother had. I don’t deal with pain as well as she did.

Remember how their generation received gas to have babies? For one of us, the gas tank was empty, another one the gas tank was broken! For me, the doctor went to the wrong hospital, and the nurse delivered me. I can’t imagine delivering a baby without any anesthesia!
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I’m so sorry that your parents have reached this stage of life. It’s wonderful they still have one another. How old are your parents?
i suggested hospice before but you weren’t ready. It really depends on the amount of care they are receiving now. Usually with hospice you get a bit more and can stop with the hospital trips. Things like the fall could be assessed and x-rayed if needed right in her room at the ALF. No need to take her out and distress dad. And it’s nice to have a nurse you can discuss their care with.
This time is bittersweet in that they are tired but it is hard to let them go. Wishing you a peaceful night.
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Forsuchatime Oct 2023
If Mom fell and broke a bone, hospice wouldn't set it, correct? That just seems cruel right now, but I understand where it would be appropriate very soon.
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It sounds to me like your parents need a higher level of care than AL.
At this point they probably need to be in a nursing home.

Physical therapy is not going to do her any good at this point. I've had care clients where physical therapy insisted on coming when really they were nothing more than expensive company to the client. They are right to stop coming.

I've cared for many elderly people in the 'failure to thrive' stage. At that point it's pretty much about the three 'C's' at this point.

1) Comfortable
2)Calm
3)Clean

Your father's doctor should prescribe him an anti-anxiety medication. That will be a help to him.

You are probably right that your father will pass soon after your mother is she goes first.

The father of one of my friends passed away several months ago. He was only in his early 70's. Everyone thought his mother would go first. She was sick. She died three days after her husband.
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My MIL was "failure to thrive". At the time she was in Rehab after having a UTI she passed shortly after. I think you should bring Hospice in. They won't be there constantly but will provide the comfort Mom needs. Morphine for any pain she may have and for breathing. Anxiety meds to keep her calm. You can tell Dad the Hospice Nurse is a new staff member. Maybe time for a wheelchair for Mom if she now shows weakness. No need for her to be walking.
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Falls are so frightening for them and for you.

My mother had mobility issues due to Parkinson’s disease. She fell quite a bit too.

PT helps but if your mom isn’t able to participate then she doesn’t have a chance to improve.

It’s awful that both of your parents are suffering with this dreadful disease. I’m so sorry. I wish that I had words to help you.

All I can offer is to welcome you to the forum and encourage you to share whatever you want to.

We have all had our share of heartaches and can empathize with the difficult emotions that you are feeling right now.
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Forsuchatime Oct 2023
Thank you!
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My LO was one of the first in her residence to fall to a COVID infection in March 2020.

I had literally called the funeral home where I’d pre-paid for her final care, (my husband and I were living within total quarantine), and then contacted her nursing staff and literally BEGGED them not to hospitalize her unless her situation became so extreme that she was totally unable to be made comfortable in their care.

They complied with my request. Her symptoms were horrifying, but they were able to manage her care, over the acute stage and into the following period of about 4 months when she was still Covid positive but asymptomatic, and by September we were once again able to visit and enjoy her company.

On our first outdoor visit she recognized me and spontaneously called me by name, and although she had been significantly depleted, she continued from there to be able to enjoy the comfort of familiar faces and I could tell her in person thatI loved her dearly and would “be back soon”.

Whether I’d been “right” or ‘’wrong”, I was at peace with the decision I’d made.

You Forsuchatime, and I, had NO GOOD CHOICES. I found out all I could, spent time thinking about what I could do (basically nothing), but whether she’d be more content with the familiar faces of the dear folks who’d cared for her and whom she knew so well, or the masked anonymous caregivers she’d have encountered if she’d been hospitalized.

You care deeply about 2 very challenged people. You are sensitive to their needs, have done all you can, and are considering a humane and rational decision.

Be at peace. Nothing you decide will be “good”, but whatever you decide now will be “RIGHT’.
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Forsuchatime Oct 2023
Thank you so much for this. I needed to hear this. Thank you.
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An ER Doctor told me everyone she comes here, a little bit of her will stay behind.. that will be her new baseline.
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