mom coming home,the dilemma

Annettes

Hi i am new here, my mom Alzheimer/dementia has been getting progressively worst over last few weeks, she is in nursing home facility. i am working on bringing her home. in these few weeks, she has been having a deep sense of sleepiness. not due to meds. we found out Friday her kidney r functioning at 49 percent, part reason she is super sleepy. I'm at an impasse, i promised God and my heart strings say bring her home at all costs, so her end stage will be with me, her only surviving child, while there is a small a part that says with now the added kidney situation from her diabetes, she needs to stay there. I'm in such a confused state, she will have 7 day 12 hour care. i am working on moving soon to a handicap accessible place. i have to purchase a portable ramp, there is about 210 steps to my apartment, my fear is what if an emergency fire or other happens. i feel like there is no real right answer, any thoughts?

JeriLynn66

Is your Mom already on Hospice? If not, kindly, is it time to consider? Caring thoughts for you and your Mom.

mabelgirl

It certainly sounds like a heart versus brain situation. God knows we’re human and certainly understands we don’t know what we’re promising. Is she in a nursing home now because it was best for both of you? If so what has changed that? Can you not be with her often enough to let her feel your presence? I’ve read plenty of posts on here where the end stage involves lots of sleeping. I personally feel like my mom has already gone and what I deal with now is just snipits of her, thus I’ve mentally already said goodbye. Prayers for peace in your decision, whatever that might be.

cdgbdr

Agree with the hospice consult. They can assist in planning for home and assessing if that is an option, or provide care in the facility. I know you want what is best.

Victoriaredux

From your earlier post :"i am so worried the home attendant, won't be able to manage while we are at work. … i brought her up from nyc to be closer, so right now she is 5 minutes from me. but seeing her in this permanent facility, where she just lays there all day, breaks my heart"

If you both need to be at work and the home attendant is late or a no show- then what? She can't be left alone and from what I've read here hospice provides a family with support but not 24/7 in home care.

Why not leave her where she is — 5 minutes from you — and spend your time together - talking, holding her hand, rubbing her feet, listening to music —not stressing about no show helpers, laundry, depends, late pharmacy deliveries , monitoring her vitals etc.

See if hospice support can be added to her care profile where she is now - that will get her more help and maximize time for you to be her daughter. I'm sorry, it is a shock no matter how old we are or the amount of advance knowledge to face someday we will lose our parent .

harshedbuzz

@Annettes said:

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

To my ear it sounds like there is a real answer to your dilemma, it's just not what you hoped it would be.

There are many downsides to moving your mom to your home.

For many PWD, any move or change in routine comes with the cost of hastening the progression of dementia symptoms. If you bring her "home", you may find she's sleepier, less communicative and less engaged than she is now. Quotes are intentional as you aren't bringing her back to a place that is familiar to her since you moved her to be nearer you.

In a SNF, she has access to medical care and the expertise of medical professionals monitoring her symptoms. Given her diabetes and kidney issues, this could be critical for her care and comfort.

Sadly, being qualified for at-home care doesn't always translate into a team of reliable and skilled people showing up as promised. I'd also question what the qualifications of the people assigned to her care are. It's like home health aides and not the nursing care available in the SNF.

It does sound like your current home is wildly unsuitable for her. In an emergency that requires rapid evacuation of the building, you would be putting her life and those of first responders at risk.

I agree with those who suggest spending more time loving on her where she is instead of stressing out over making plans to move her and deal with supervising a caregiver schedule. I don't know that she'd qualify for hospice, but it doesn't hurt to explore that option.

HB

Annettes

I thank you all for your comments, LTHOUGH MY HEART ACHES AT THE THOUGHT OF NOT bringing her home, i do agree a snf is more suitable especially now with her current situation with her kidneys, no i don't feel like i spend enough time with her, i am going to have to spend more, And make some adjustments to her room for comfort, and also discuss hospice, if that's where we are at and if she qualifies. i have to admit sometimes its hard the things she says throw me for a loop, or i get super emotional. i don't display it while I'm there, I say and go home. these days us as if she barely knows I'm there, the sleepiness consumes her, and that is also so hard to witness. the main reason for her coming home is i wanted her last days to be with me, And not me receiving a call at 4am that she passed alone in a room. all she says when i visit is she is lonely. because she is. Alone n a room with no one to talk to.

harshedbuzz

@Annettes said:

the main reason for her coming home is i wanted her last days to be with me, And not me receiving a call at 4am that she passed alone in a room. all she says when i visit is she is lonely. because she is. Alone n a room with no one to talk to.

You can still be there for her. IME, most MCF/SNFs allow visitation 24/7. If the end is imminent, families are generally encouraged to spend as much time as they want with their LOs.

Given how poor the short-term memory of most PWD is, she's probably not recalling the company she's had. It's still hard to hear her complain of being lonely, but this is a common dementia caregiver experience. A friend used to travel and hour each way to visit her brother each week. She always brought him a meal of one of his favorites of their mom's recipes plus some of his favorite cookies. Four of his five kids were local and came once or twice a week. His wife was there daily. And yet he claimed nobody came to visit.

If the SNF has any activities, I wonder if it would be possible to get her into a chair/broda chair in the common area of the facility to break up her day even if it's just observing others.

That said, my dad died all alone in his sleep at about 10:30pm. I do not regret this at all. To my mind, this was the gentlest passing possible. I had spent the afternoon with him. I brought him Chik-Fil-A tenders, fries and a milk shake. We had a lovely visit. He told me a ridiculous story about my younger sister visiting him finally and promising to see more of him. Spoiler alert- she died in 1994. I was relieved he was spared the bedside vigil and knowing he was dying.

YMMV.
HB

Victoriaredux

It's pretty common also for patients to pass when alone . Someone leaves for a few minutes to make a call and their loved one is gone.

Rather than feeling bad when this happened in my family I remember one of my favorite poems

https://www.poetryfoundation.org/poems/157986/high-flight-627d3cfb1e9b7

I imagine them "[slipping] the surly bonds of Earth and [dancing] the skies on laughter-silvered wings" free at last of this horrible disease .