How Do I Keep My Mom at Home (with me) vs Assisted Living with Alzheimer’s

NVSullivan · June 8

Hi! I’m new here, and my Mom was diagnosed this past fall. Things were ok, but I moved her into my house to keep an eye on her. I left my job to be with her full time, and things were good! After getting a Bladder Infection, she has taken a HUGE turn, and her Anxiety is OVERWHELMING her, to the point that she’s still having mini anxiety attacks, while taking the medicine she’s prescribed that should keep that from happening.
An assisted living facility was mentioned, but that’s not what my family wants. We would like to take care of her at home. We are happy to bring in Home Nurses, or Occupational Therapists, but how do I advocate for at home care??

M1 · June 8

Welcome to the forum. Ask for a hospice consult. That is your best bet for getting home assistance. You don't need a doctor's order for it and can call yourself, they will assess her to see if she qualifies. If she has Medicaid she may also qualify for some at home help, Medicare does not cover home help otherwise.

Lynn24 · June 8

We moved my mother in with us over a year and a half ago, and has managed her symptoms with cbd and medication. We have a caregiver come in a few days a week to help out, during the morning hours. Since my mother is mobile and not bedrodden, the caregiver comes in for 2 1/2 hours each morning.

A few months ago, we admitted her into hospice comfort care services, due to agitation of which has been amazing help to us. She has been assigned a social worker, a case manager RN, as well as an aide to help with bathing a few days a week, so yes, I encourage you to have her assessed for hospice services. The RN case manager coordinates all of her medical care, since she is the liaison between her assigned primary care physician, and my mother, who is the patient.

She has been taking Seroquel for a few months of which has not gotten rid of the agitation, but has helped her become more manageable during bath time, for example.

Many blessings.

H1235 · June 8

Your local commission on aging might be a good place to go for the resources available in your area.

harshedbuzz · June 8

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

This is going to be dependent on a number of things- whether you can get her behavioral health adequately managed, the stage in which she is, financial resources, available family assistance and the physical layout of your home.

If she's at a later stage, she may qualify for hospice. This would give you a team to provide supplies including DME, twice weekly bath aides, a nurse, medication, etc. This is covered by Medicaid/Medicare. Some people are disappointed that hospice doesn't offer actual hours of care so you can attend to your own needs or get a break. Some days of respite are provided annually, but generally not in the home.

If you don't have hospice on board and you want her home, then either family provides supervision and hands on care or hires privately or via an agency. This care can get expensive (figure $35/hr via an agency with a minimum commitment of about 15 hours/week) and can quickly exceed the cost of a facility which is why many families opt to place their LOs.

If she's mobile, I would encourage you to see a geriatric psychiatrist for medication to address the anxiety. IME, PCPs and even neurologists are reluctant to prescribe the classes of meds needed to effectively address behaviors.

HB

NVSullivan · June 8

https://alzconnected.org/discussion/comment/212078#Comment_212078

Thank you so much for your response!!! I will reach out this week! I had been thinking maybe Hospice would help, but the word scared me at first!

NVSullivan · June 8

Thank you so much! This is INCREDIBLY helpful! My mom was JUST put on Seroquel, and so far it has aided with sleep, but not much else! I think as others have suggested, hospice sounds right, especially based off of your very helpful comment!

NVSullivan · June 8

Thank you so much! I’ll look into this! I’ve never heard of it before!

NVSullivan · June 8

Thank you SO much for your detailed and insightful response!!!! I am going to be reaching out to hospice this week! I have also reached out to an in home care nurse for a meeting, but I’ve been hesitant…I think I’ve been worried it’ll upset her, but, I think it’s definitely time for some extra help.

Charlie4316 · June 8

https://alzconnected.org/discussion/comment/212079#Comment_212079

Wow so glad to hear you've had a positive experience with in-home care, I consider you to be lucky. My 97 year old mom has Mixed Dementia; Alzheimer’s dementia; Vascular Dementia and severe white matter disease, I gauge her to be in Late Stage 5. I started with in-home hospice in NYC, which sent in a team similar to what you described but she refused Seroquel and other meds that would help with insomnia, anxiety, depression, anger and agitation. They discharged her due to medicare rules and I found in-home palliative care with a decent agency but she would not comply with their treatment plan, refused meds and only will accept part time home health aides. That agency was bought out by a lesser quality agency and the NP lacked knowledge about dementia, and was rude to the home health aide so I'm in the process of referring her to a new in-home medical agency that is supposed to be able to treat dementia. I'm sorry to complain but the amount work involved is a full time job. Her wish has been to remain in her home but I wish I had moved her into an ALF where her medical and dementia needs would have been provided and I would not be so overwhelmed. I retired early to care for her, I wish had more knowledge of dementia sooner although I consulted with a dementia specialist, some of the advice was helpful other advice backfired and caused conflict between us. She's obsessed with her finances, recently filed fraud claims with 3 banks for legit purchases and I had to petition for guardianship because she went behind my back, found a new lawyer (who I called to reports she carries diagnosis of dementia and provided medical documentation to support this) despite my efforts he became her new POA and created a new Trust and named himself Trustee. I petitioned for guardianship because of this, which of cause is very stressful, anxiety provoking, and time consuming. I have been granted temp guardianship, now she won't talk to me because she has denial of dementia (one of her symptoms) and paranoia directed toward me. Thanks for allowing me to vent. I welcome any supportive feedback.

How Do I Keep My Mom at Home (with me) vs Assisted Living with Alzheimer’s

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