End of life....how do you know??

Bird

Hello all,

My dad is end stage alzheimers.  At this point he is sleeping a good 22 1/2 hours per day at least. Sometimes its very difficult to rouse him to eat and his eyes always seemed rolled back.

He eats sometimes and drinks.  Sometimes it might be nothing more than a teaspoon, but sometimes more.  He is non verbal, bed ridden and unable to walk etc.  His secretions are definitely up as he is likely having a hard time swallowing, so he sounds very "gurgly".  

My mom, fortunately has a live in aid 24/7. So he is home and will remain at home. We have had palliative care in and all have said he needs to be on hospice.  Mom is still refusing that. 

We recently had a swallow eval done and that person said he will likely very soon be unable to swallow and take in any liquid.  I'm so terrified he will choke etc.  I just want my mom to be able to call someone to help.  At this point he's suffered so so much and I worry more for him if she continues to NOT allow hospice in.

They are doing another eval on the swallowing today so we will see how that goes and if they can convince mom to let hospice in.

Thank you in advance for reading and offering any insight.

Hope you all have the best holiday you can.

Birdie

Rescue mom

I am so sorry for all of you. My mom had hospice, and it was such a help and a blessing. Do you know any reasons why your mom does not want them? 

Hospice will not do anything you don’t want done. But they can help so much, both in easing the passage for the LO, and in helping the family who remains. I’ve never heard anyone be sorry or regret having Hospice, almost all say they wish they’d had Hospice sooner.

There is no cost to you.

Without knowing her reasons, it’s hard to advise. Does she accept he is end-stage? Hospice can/will do everything possible to make his passing as “easy”  and pain-free as possible, and provide help/counseling/comfort for family if wanted.  They can help so much at the final time, when a lot may be happening that’s hard for others to understand or deal with. They can truly be a huge huge help for everyone.

mommyandme (m&m)

If she’s in denial, that’s hard.  Your dad sounds like he’s transitioning and possibly actively dying.  Hospice should be called just for his comfort immediately in my opinion.  They can provide meds to dry up mucous, they can do so many things.

My mother has been on hospice since February.  She still eats and walks with assistance often.  With dementia, hospice can be involved well before the transitioning stages of death.  The 6 mo timeline to end of life doesn’t necessarily pertain with dementia.  I have meds in the fridge if suddenly my mom begins a transition.  

I believe your dad needs things to make him more comfortable.  Dying can be painful to internal organs etc… He may become agitated suddenly because he’s in pain.  Another sign of pain is clenching teeth.  

Please try to explain to your mom that because he’s got dementia he doesn’t need to be close to death to receive hospice services.  A lot of people call on hospice so late and wish they had gotten the support much sooner.  

Thoughts of peace and comfort are being sent to you and yours during this difficult time. 

sandwichone123

Hospice is super helpful as other people have said, but for me the #1 benefit of having hospice at the end of my mom's life was that I knew EMS would not be coming to try to revive her. To me, the idea of someone doing CPR on my mom and transporting her to the ICU was the most stressful possible.

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harshedbuzz

Birdie-

To answer your title question, I just knew. Dad showed some ominous signs (loss of 10+% of body weight, and a real change in the physical appearance of his face and body) despite being ambulatory and verbal to the point of being able to converse despite not always making much sense) in the last week or so. My mom disagreed. I shared my concerns with the DON at the MCF where he resided; he ordered a swallow eval and some tests. 

I shared my concerns with my husband who came with me to visit the next day and he agreed that dad was moving towards active dying. By this point, his skin was a bit mottled and he'd developed that gurgle in his throat. The next day, the SLP came to do the swallow eval. She remarked on the disconnect between dad's language skills and his ability to swallow. She ordered thickened liquids but not a pureed diet as dad still enjoyed eating. I'd brought Chik-Fil-A for his lunch which he enjoyed. We met with the DON who asked if family would agree to a hospice eval and I said of course. On my way home, I told my mom about the diet changes and tests and the upcoming hospice visit and shared that I was concerned. She didn't think he'd qualify, so I suggested that his COPD and cancer might bring hospice services on sooner with dementia and left it at that. I also called my uncle who seemed in denial about how advanced dad's dementia had become and warned him about the change in appearance that shocked me earlier that week. Dad died later that evening. His death certificate lists "aspiration pneumonia" as a secondary cause after Alzheimer's Disease. 

I really regret that my mom didn't get hospice services even more than my dad missing out on an additional layer of care. We're a small family and supporting mom falls almost entirely to me and I know sometimes she doesn't reach out because she doesn't want to be a burden. She's new to this area and hasn't any good local friends or a church home, so that chaplain, especially, might have been helpful for her.

It sounds like your mom feels like hospice means death is imminent or that she is giving up on dad. It's not. LOL, my late MIL (no dementia) was on hospice for 5 1/2 years. It would provide some help in the house; perhaps you could sell it as extra help for her aide. It often covers certain supplies and medical equipment to make care easier and more comfortable- incontinent supplies, alternating pressure mattresses, etc. The other piece is that, you can cancel hospice services at anytime. My neighbor had hospice care as the result of end stage MS and then changed her mind that she wanted aggressive MS treatment as she was about to be a grandmother. She was transported to the hospital where she died a few days later about 2 weeks before the granddaughter who was named for her made her arrival. 

Good luck. I hope you are able to get your mom and dad the additional help.

HB