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Husband doesn't recognize me: Struggling to keep him safe
Caregivers: Dementia | Last Active: Mar 31 5:42pm | Replies (44)Comment receiving replies
@memoriestomoments
Thank you so much for your helpful suggestions. A few things have changed for us since my initial post. After a 5 day hospital stay following a UTI, we are now receiving home care services put in place with the help of the hospital social worker. He had an episode in the ER and had to be sedated and restrained. Thankfully he was seen by a neurologist who recognized many Lewy Body Dementia symptoms and was able to direct his treatment process so that he received more appropriate care.
He was also diagnosed with bradycardia, which unfortunately eliminated the medications he could receive that would have helped to reduce the agitation and hallucinations. All of those medications have the risky side effect of lowering the heart rate, and his heart rate is currently averaging between 39 and 45.
The cardiologist will not consider a pacemaker because the effects of anesthesia on patients with advanced dementia does not improve quality of life. If he made it through the surgery, he would most likely end up in ICU, then most likely a nursing home. So, here we are; caught between a rock and a hard place.
We don't have long term care insurance and the cost of a good memory care facility is beyond our means. We're both receiving pensions and Social security benefits, so we're not eligible for Medicaid services. If anyone has any information regarding any help or services that would help with at home care, I would be forever grateful if you would comment.
His Medicare plan is paying for a physical therapist, occupational therapist, a speech therapist and a nurse who makes home visits. The VA has provided a sitter who comes for 12 hours a week to give me a break so I can take a nap or run errands or do nothing at all. They also provide Depends, so that is another huge benefit I am happy to receive. I have to catheterize him every 4 hours, but thankfully Medicare pays for them.
I'm still physically able at 69, and my husband, 74, is still fairly ambulatory but using a cane now for balance issues. In spite of what seems like a mountain of issues, I do hope that he can remain at home for however much time we have together. I'm trusting in God to see us through.
Replies to "@memoriestomoments Thank you so much for your helpful suggestions. A few things have changed for us..."
@sr5367sh
Hello:
I was under the impression the VA had facilities where he could stay at no charge, if he's a Veteran?
My mother-in-law placed her husband in a VA memory care facility when his Alzheimers became more than she could deal with over time. She did have to wait a few months for a bed to open up for him there.
Good luck to you.
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@sr5367sh , Ref. Your update. That’s a lot to manage. So glad you have outside help coming in! That’s great! I hope it helps you and him.
I’ll just say that with the meds for agitation….often it’s a risk/benefit analysis with the understanding that risks exist but staying in the home is often a primary goal and the ability to do that depends on reducing the agitation. I might seek input from a doctor who regularly treats patients in that situation. My dad’s heart rate was low too, but he needed certain meds to treat his mental distress. He had afib and congestive heart failure. He was not a candidate for pace maker either. He eventually came off BP meds due to low BP.
Depending on his condition, he may become to need skilled nursing care. You don’t have to be bed bound. They provide care for people who have dementia too. It can be quite subjective.
I’m not sure which state you are in, but in most…qualifying for financial help for Memory Care is different than a nursing home. Memory Care help is based on state assistance programs (in my state called Special Assistance) and has strict often low income limits. So it’s easy to not qualify if you make too much. But nursing homes are funded differently by Medicaid and that’s a different formula. It can be easier to qualify and various factors are considered. Not the limits for Memory Care. It’s very complicated, but I’d explore it with an expert in advance so you know what to expect. An estate planning attorney who focuses on Medicaid might be helpful.
Good luck with everything. I wish you and your husband all the best.