Is anyone familiar with symptoms of Dementia with Lewy Body?
About a year ago mom very suddenly got extremely confused, slurring her speech and hallucinating. My husband said it was just "old age", I didn't thing so. I called the dr. and she suggested I bring in a urine sample, it may be a UTI. Sure enough it was. Mom was given antibiotics & within 2 days her mind was back to normal. Sharp as a tack. She remembered her mind being very foggy, but didn't know she was "seeing cows" on the rooftop of our utility shed. Even tho she was 94 she never experienced anything like that before. We have a mother in law apt for her downstairs, and she has always been very independent. Cooks, washes clothes, reads, sews, etc. She even washes windows! Then just 8 weeks ago, she started the hallucenations. It was Friday afternoon and she was seeing "mice" running around in her living room. I just thought she was having a nightmare since she was dozing off in her favorite chair alot while reading the paper. She snapped out of it, then Sat. night it happened again. Sunday night she slammed the door on her finger, screaming that men were coming in the house. She knew something was wrong. I assured her I was going to get her medicine in the morning. Next morning, she was very, very tired. I gave her some toast and coffee & the caregiver came to stay with her while I took a specimen in. The dr. said it was a UTI and gave me antibiotics. By the time I got home with the meds, the caregiver said she had been sleeping all the while. I tried to wake her and she was unresponsive. Called the dr & she said have an ambulance bring her to the hosp where they could administer antibiotics via IV. At the hospital she woke, but was extremely agitated. Screaming when they did the IV, etc. They had to give her Atavan. All tests came back negative! No UTI, no infection, nothing. Her vitals were fine. Not being use to Atavan, she slept 16 hrs. AFter 2 days in the hospital, still confused and now unable to walk on her own, they told me I would need to put her in a NH for rehab, etc. because it was too much for me to care for alone. After about 3 weeks she "suddenly" got her senses back! I couldn't believe it. Talking normal, and understanding everything that was explained to her. She responded well to her PT, and even started walking with the walker, greeting people happily because she knew this was short term and she'd soon be home. That lasted another 2-3 weeks. Then boom! Total paranoia, hallucenations, memory loss. She thinks there is a conspiracy at the NH. Believes she is being watched on cameras. Is so frightened and wants to come home. I am so torn. If a person has this dementia with Lewy Body, do they go back and forth like this? Can they get their thinking back so clearly that it seems they are perfectly normal again? I want to believe its an infecton, but the NH keeps telling me this is all part of the dementia? If she clears up again, will she just get another setback? If I bring her home would it help her get over the paranoia and fright? My husband wants me to leave her in the NH because he knows the toll her caregiving has taken on me all these years (over 30), but I keep thinking Can it really be this type of dementia since she comes back to nomal for a few weeks?
Any help others can give would be greatly appreciated. She's never been like this before.
What you describe is consistent with Lewy Body Dementia. All dementias fluctuate some, but large fluctuations are a hallmark of LBD. It is often referred to as a "roller coaster," but toward the end our experience was more like a pogo-stick ride -- ups and downs and not much transition in between.
I was able to keep my husband home the entire 9.5 years, in large part, I think, because he had excellent medical care and was one several drugs that were very effective in controlling the symptoms. Much of the time someone who did not know him would not be aware of his dementia. I caution you, though, that the disease varies greatly from person to person, and so does the response to treatment.
Who (what kind of doctor) diagnosed the Lewy Body Dementia for your mother? Is she being treated by an expert in that disease?
If you do consider bringing Mom home, be sure you have first arranged ample in-home care help, and that you have plans in place for respite. If she stays in the NH, you can visit her often, perhaps take her on outings on her good days and contribute to her quality of life in that way.
As to whether taking her home would help eliminate some symptoms, I frankly doubt it. Work with a doctor on the paranoia and fear, whether you bring her home or she stays where she is. Address each new symptom as it occurs.
My best advice to you is to consult an expert in this disease.