My father's neurologist believes, upon initial assessment, that my father may have dementia with lewy bodies. He is beginning a series of tests this week. Does anyone have experience with this in terms of symptoms, obtaining a diagnosis, and afterward?
She was having hallucinations and delusions on a daily basis. It got to the point I couldn't go into her room because she was convinced I was trying to kill her. That's when we had to put her in the observation unit in the hospital for 3 days. Finding a psychologist who took the time to listen to me and listen to my concerns and research is what made the biggest difference for us.
I started noticing she would lock her fingers pointing towards the TV, she would tell us the FBI was communicating with her through her oxygen tube, she "saw" neighbors across the street looking through the windows (they weren't), she "heard" people in the basement and told me constantly she heard music and people having a party downstairs (we don't have a basement or a downstairs).
I took her to a mental health expert (psychologist specializing in dementia) and she came to the same conclusion. We took her off the Buspirone and put her on Seroquel. I saw a change literally in 48 hours! She has been on that med for almost 8 months now and I would call it a lifesaver at this point. I have only been slapped once or twice, and she has what we call "mini meltdowns" rarely now, and usually while she's getting ready for bed. Her "tantrums" used to last up to 6 hours and now they tend to max at 15 minutes. Our house is now filled more with laughter than screaming and cursing! :)
My opinion: Do your research. If one med doesn't seem to be working, consider trying a different one. I learned that people with Lewy's tend to be highly sensitive to certain anti-psychotic meds and they can actually make their condition worse rather than calming them. That's what happened with my Grandma.
You are their biggest advocate! I had to make doctors listen to me when they didn't want to. But I can be pretty pushy sometimes ;)
Also, at night, she takes Melatonin along with her other meds. And, since she's been on the Seroquel she usually will sleep through the night, where before, she was waking up, sometimes, up to 6 times a night!
She started having visual hallucinations the first year she was in the wheelchair, but at the time we tended to dismiss them as vivid dreams...she must have just fallen asleep in her chair, that sort of thing. Around that same time she also started hearing a man "singing" to her...believed he was out in her yard somewhere. We also began to notice a decline in cognitive function...some memory related but mostly executive...couldn't balance her checkbook, numbers in general would get her all befuddled, poor judgement (in Nov. 2008 she ordered over $500 worth of foodstuffs from Figi's and Swiss Colony catalogues - all for her own consumption!!) couldn't follow recipes or even a simple set of directions, etc... There were days when she seemed right on top of her game and days when she didn't know if it was morning or afternoon. Of course every time we took her to the neurologist she was having one of her "good days" so she failed to see any cognitive issues, and since we weren't entirely convinced ourselves that she was hallucinating we just told her MIL was occasionally having "some very vivid dreams". In 2011 the neurologist told me she was "leaning toward" a diagnosis of MSA. Then this past February MIL went through a full blown hallucinatory "event" that lasted well over 12 hours, seeing things in droves....made her agitated, delusional. It was one of the most nerve wracking ordeals I've ever been through.
After that I conducted a "look-back" through the last five years and I'm now convinced she has DLB. It's as if all the "random" pieces have finally fallen into place, and although it s**ks at least I don't feel quite as frustrated.
Wow, didn't mean to ramble on like that...guess I needed to unload more than I realized when I started this post. Thanks for listening...I hope us LBD'ers will continue to vent and share with each other.
I was able to keep my husband home for the entire journey, not because I am a better caregiver than the people who couldn't, but because his dementia developed very slowly, and because I got some help. The more usual course is for the dementia to eventually get to the point where it would not be optimal or even possible for one caregiver to provide the best care in a private home.
I did not get as much respite as I should have, looking back. It is almost six months since I'm no longer a 24/7 caregiver and I still feel worn out and depleted. I expect to fully recover, but it would have been easier, I think now, if I could have gone away more.
But I did have help. Our son took care of all household maintenance, yard care, emergency plumbing repairs, etc. I had a house cleaner. A daughter managed his many medicines. One of the kids would stay with him when I went to caregiver support meetings. For a few years he went to an adult day health program a few days a week. When his health declined to the point where that was no longer suitable (in his last year) I had a PCA 32 hours a week who helped him dress, bathe, made him breakfast and lunch, helped him with PT exercises, 4 days a week. (I worked full time to support us, from home.)
His medical team was awesome in addressing each new symptom as it arose.
Even with his very slow decline, I could not have kept him home without the help I had.
I can't imagine one daughter taking care of two parents with dementia without considerable help. And even with help, the time may come when keeping both parents at home just is not feasible.
The caregivers in my support group who had to place their loved out in care agonized over the decision for many months. And once placed they continued to spend part of each day in the caregiver role. No one who is forced by circumstances to placed their loved one in a professional care center should feel guilt or like a failure. We each do the best we can as long as we can. I was lucky. I certainly don't mean to say to anyone, "I kept my loved one home, and you should, too."
My advice is get help while your parent or spouse is home, and be open to possibility of care center placement.
Each kind of dementia is awful. There is no "good" or "better" dementia. Let me mention some of the distinguishing features of DLB.
1) While Alzheimer's Disease (AD) goes through recognizable stages, DLB does not. It gradually (or rapidly) gets worse over time, but there is no recognizable "stage 3" or "stage 5".
2) Cognitive abilities fluctuate frequently, with good days and bad days, and even bad hours within a good day.
3) Memory loss (especially short-term memory) is a symptom, but it is not always the most prominent feature of the disease, and it does not follow the same pattern often seen in AD, with the patient regressing backward through the years. My husband's memory loss was pretty constant for 10 years, with "bad days" being worse, but not with year 6 being worse than year 2. And he never thought that he was 30 or that his twins could not be his daughters because they were too old.
4) Impaired judgment is often more of a problem than memory.
5) Depth perception and visiospatial abilities in general are often impaired. This can lead to falling and/or fear of walking, difficulty getting seated, or into bed.
6) There is less actual death of brain cells in DLB which means treatments have a better chance of succeeding. If you encounter a doctor who throws up his or her hands and says, "He has dementia. There is nothing we can do," throw up your hands and wave goodbye. That isn't true of any kind of dementia, and it is especially wrong-headed about DLB. A cure? No. Many approaches to improve quality of life and reduce or eliminate symptoms? Yes! For example, Aricept, developed for AD, is more effective for DLB. On the other hand Haldol should never be given to DLB patients as it can cause permanent damage or even death, but may work OK in AD patients. You need a doctor on your team who doesn't think all types of dementia are the same.
7) Loss of the sense of smell is common in DLB. This can have a negative effect on the enjoyment of food. My husband gradually got used to it.
8) The protein deposits called Lewy Bodies (after the researcher who discoverd them) are found in the brains of persons with Parkinson's and persons with DLB. Exactly what the disease is called depends on whether the symptoms are mainly physical or cognitive and which kind of symptoms came first.
9) The kind of memory loss involved does not usually include not recognizing formerly familiar faces. My husband knew who all the people he interacted with were, up to the very end. This was the experience reported by caregivers in my support group, too. He might not have remembered the hospice nurse's name, but he knew who she was.
10) Generally, DLB is not considered to be inherited or to run in families. Early onset forms may be an exception. This does not mean that the same family can't have more than one person with DLB, just that the risk is not thought to increase greatly if it has appeared somewhere in the family.
11) At least in our specialist's opinion, physical activity, social and mental stimulation are especially important in DLB.
Those are kind of the highlights I can think of in my journey as a caregiver. I highly recommend the official LBDA web site for good information about all aspects of the disease.