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It's been awhile since I've been on the forum. I am the sole caregiver of my 88 year old father who lives alone. He's fairly healthy but has been showing all the signs of Lewy Body Dementia. Hallucinations, voices, not thinking as clearly. I cannot get him into a neurologist until late May. In the meantime, I'm over there every night and on weekends. I also work full time. Needless to say, this is not sustainable. Everyone who has been in contact with him says he is not safe to be home alone. This is true. He has stretches of times where he is fine, and then when he is not. For example, he has called the police for the third time due to "people" in his house. These are the hallucinations. Do I start looking for a caregiver in his home, or do I take a bigger step and move him out of the home in a care facility? Money is an issue. He will not have a lot of funds for assisted living for long. He is a veteran, so there are some options there. The stress is exhausting and it is affecting my job. I know what eventually needs to be done, but my mind is racing on what to do next and how. Just looking for some advice from those of you who have been here before. Thank you.

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I suggest taking him to the ER for altered mental status. He will be assigned a neurologist and a psychiatrist & start some testing. While in the hospital he will have a social worker to help you sort out where its safe for him to live.

If VA cannot help enough he may need to apply for medicaid.
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Laeric, the first thing I would do is get him registered for VA assistance.   If the procedure is the same as it was several years ago when my father and I went through the assistance process, your father would be assigned to a "team", (i.e., green team, red team, etc.).   

Each team had a social worker.  In my experience they were worth their weight in gold.    I learned so much from the social worker.

In the meantime, you might want to sign up for the VA e-letters, addressing a lot of topics affecting Veterans, as well as caregivers.  Support for caregivers seems to have stepped up since we were involved.

Sign-up site for e-letters:

U.S. Department of Veterans Affairs (govdelivery.com)

For caregiver support info:

https://www.caregiver.va.gov/
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Yes, we have done the ER visits many times. They give him a battery of tests and he always comes back okay. Usually a five minute consult with a neurologist which does nothing. They always discharge him. He does get visiting nurse, OT and PT upon release for about 3 weeks. Then we start all over again.
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We did the ER thing 3 weeks okay. He checked all the right boxes and was released. He's in the donut hole of care right now.
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What does the hospital treat him for when he goes in? Has he been tested for a UTI (which many elders get and can create behavior changes, confusion, etc) and other causes, like dehydration, vitamin deficiency, diabetes, high blood pressure, etc? It would be great to get to his May appointment having discounted all other possibilities for his symptoms.

Are you his assigned PoA? If not, and he is not legally competent to create one at this point, or he is unwilling, then you may have very little control over his care decisions without a diagnosis of cognitive impairment, as you are finding out. To get him to his neuro exam you may need to use a "therapeutic fib"... maybe tell him it is the required/prescribed follow-up from his ER visits, or any other story you think he'll buy. At the appointment, make sure to ask for the Medical Representative form (it's a HIPAA privacy form). Have your dad but your name as his MR. This will allow you to discuss your dad's health issues with his doctor without your dad needing to be present, and you can give his doctor actionable information.

Also at this appointment, discretegly give the staff a note outlining your concerns about his behavior and his living by himself, that you're his son but can't provide the care he needs. I did this with my MIL and the staff was very accommodating. They allowed me to sit in the room during her testing, positioned behind her so that if she answered questions about her symptoms or ADLs, I would shake my head yes or no so the doc got accurate answers. I wish you success in getting him to the appointment and for an accurate diagnosis and cooperative dad!
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Your dads dementia will only grow worse. In home care is expensive. And probably won’t be sustainable.

I would start the search now for memory care. You need one that will take medicaid. I was fortunate, when I moved my mom from Arizona to here, I found one that waived the 1 year self pay (she had about 10 months ) and moves on to Medicaid. I used a placement specialist, she knows the area, availability, cost , needs, arranged tours etc … she’s paid by the AL.. by the way, I used an independent company called Carepatrol, maybe there is one in your area. Otherwise Google placement specialist , it will take a little digging. This person was invaluable to me…

Reach out to your county office for aged and disabilities. They may have recommendations and or guidance for you. They also would help you with the Medicaid process, and clarify the assets process. Your dads home could help pay for his care if he owns it.

contact your county office for veterans. Find out if your dad has benefits owed him. The county office is not the VA , but they can guide you and help you apply for benefits. It took a lot of work but my mom gets aide and attendance monthly $1200.

I wish you peace with all this.
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Yes, I've been there before, I know the stress level you are having. It will get worse. What worked for me was the ER, social admit in the hospital, and then to a NH under Medicaid pending. You may not be at that point yet, if you are not I would strongly suggest placing him in a memory care facility or NH. You are likely going to need assistance though by a SW, maybe the VA is an option there. Or your local Agency on Aging. If he has funds, you can use what he has and then apply for LTC Medicaid. Memory Care may not take Medicaid though, so you may want to try to get into a SNF.
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