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ErinFlorida Asked February 18, 2024

How do I know when to transit from ALF and what are next steps/options?

Mom still in ALF where I placed her back in September but declining at a rapid pace causing me to be with her 60+ hrs a week inside the facility. In the last 10 days she has become 90% wheelchair bound and is in Depends around the clock. LBD is her diagnosis and it is horrifying to witness. 3 siblings want to put her in Memory Care or Nursing Home but she still has so many happy times, I don’t want to take that from her. Ive been in healthcare my whole adult life and have seen what goes on in both Memory Care and Nursings Homes and am certain she doesn’t belong there. Not yet. Hiring a personal aide in addition to cost of ALF is impossible financially. Any suggestions? Help please 😔

AlvaDeer Feb 29, 2024
Basically this is up to you.
I don't know what you life is like, but if this is how you wish now to spend it, and if it keeps her somewhere she loves, I would likely attempt to do this up to the point it was ruining my life.

The siblings are correct in that this is coming, and you are putting it off with your own body, heart and soul.
I would discuss this with management of the facility as they may be very close to discussing it with you.
As your mother is acclimated to assisted living facility she may adapt ALSO to the MC, and be safer, allowing you to attempt to withdraw yourself slowly a bit at a time to a better quality life for YOU.

I wish you the best.

waytomisery Feb 29, 2024
Your mother does not belong in ALF any longer , which is why you are there 60 hours a week.

Since you say hiring an aide is impossible , you are stuck doing your 60 hours until you transfer Mom to Memory Care or SNF . I don’t see what we can suggest .

I think YOU are the one not ready for Mom to be transferred.

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againx100 Feb 28, 2024
Since you are providing 60 hours of care for your mom, she obviously DOES belong in either MC or SNF. Providing that level of care is unsustainable. You have a life which you deserve to live. I don't think it's good for you to spend that much time there. Does her ALF have other levels of care there? If so, talk to the staff. Let them know exactly what care you are providing for her and that you need to cut back and see what they suggest.

strugglinson Feb 28, 2024
I dont know you, so I don't know if you like spending 60 + hours there a week and are happy continuing that, or if you are telling us that you are getting tired having to spend that much time?

However, I will speculate one thing - with you spending 60+ hours there to help out, the ALF are quite happy with your help, and so they are not saying anything.
I suspect that if you substantially reduced hours there, perhaps spending say 9 hours a week there, so their staff have to do their work, then quite quickly the ALF might be suggesting that Mom is no longer able to be supported by them in the ALF. just my hunch hearing this description.

So the big factor to answer your question in the title is whether you are ok continuing to put in 60+ hours a week directly in the ALF to support things to keep working out.....

Llamalover47 Feb 28, 2024
ErinFlorida: Perhaps you can get a better answer to your question by posing it to the ALF itself. We are a forum of strangers.

SZHNJ1023 Feb 28, 2024
When my dad was transferred to LTC from AL, the facility made the determination. Assisted living is just that: assisted. In my father’s case he had declined to the point that if there was an emergency he was not mobile or competent enough and would have required full assistance getting out. I am surprised the facility hasn’t said anything yet. It’s so hard, I know. I’m wishing you the best of luck with this.

AlvaDeer Feb 19, 2024
Are you discussing this with the administration and staff of the ALF?
We are a Forum of complete strangers, but the staff and administration of the ALF is right there at her side 24/7 daily.
They will be your best guide as to the level of care she requires.
For my brother's facility it was finely combed out the needs of the senior, the ability of staff to provide with less staff in the ALF versus more in the MC, the requirements and needs and thoughts of other residents.

Make an appointment today. It would seem to me that level of care has already risen to level IV? You may not pay a whole lot more for MC and it may be safer situation.

You are correct about Lewy's. My brother was diagnosed with probable early Lewy's by his symptoms. He told me he dearly wished to die before it progressed and took all his powers and control from him. He died of sepsis before that could happen, and more and more, over these last five years since his death, I am profoundly grateful for his passing before it could progress. I am so sorry for all you are going through.

Geaton777 Feb 19, 2024
My stepFIL had LBD and Parkinsons, in his 80s (and who knows how long he went undiagnosed before that). He did not decline as fast as your Mom is when he was at home and receiving inconsistent care, but once he went into a facility it progressed pretty fast.

Before you may any decisions regarding her care, please make sure she doesn't have any other medical issues going on, like a UTI, which is very common in older women due to changes in hygience, physiology and pH. It can produce dementia-like symptoms and increase dementia symptoms in those who have it.

If it turns out she has indeed become wheel-chair bound, this is "good news" in the sense that she may now qualify for LTC, which is covered in FL by Medicaid.

Does the facility she is currently in accept Medicaid? If not, she will need to be moved. Her physician will need to assess her as requiring LTC. This is one of the qualifying criteria to be eligible for Medicaid. The other is financial need. Please consult with a Medicaid Planner in FL before you do anything so that you can get her accepted as quickly as possible.

I'm so sorry for these circumstances. May you gain clarity and wisdom and receive peace in your hearts that you're doing the best for her.

cwillie Feb 19, 2024
It really depends on you AL facility. Although a traditional AL is usually designed to be a place for people who require minimal assistance there are some that have blurred the lines between MC and NH and not only accept but can handle those with higher needs, it really depends on you AL facility. I want to caution you that many family members over state the benefits of remaining in a familiar home and fail to consider the very real deficits in care that may pay for that choice, a NH facility will have a higher staffing ratio and the equipment and nursing needed for those with complex physical needs.

NeedHelpWithMom Feb 19, 2024
I suggest that you stick around for answers from the many people on this forum who have placed their family members in memory care.

They can help you navigate through this process. I do not have any experience with having to place a parent in memory care.

Wishing you peace as you continue to care for your mom.

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