My 57 yr old husband diagnosed w Lewy body 6 months ago. I never heard of this before his dx can't believe this is our new reality. We had 2nd opinion that agrees w initial dx, ssd was approved, meet w elder lawyer to update our trust. Now I'm house hunting for a ranch model home. My husband seems better than he was 6 mo ago I give credit to his meds. No falls . With that being said moving forward I'm wondering is this a good idea and how long do we have to buy and sell. Anything I missed that I should be doing? Anybody else going thru this?
Welcome Onewife Yes welcome but so sorry you have had to join us. My DH doesn't have Lewybody but three other dementia 's. He has been in LTC for a year and a half and so far things are calm. There will be many others coming along to be here for you. Take care
My father has Lewy Body (and my husband has Alzheimer's). Dad wasn't diagnosed with Lewy Body until 2007, about three years after my mother passed away, but in retrospect I saw the signs much earlier than that. After Mom passed Dad lived alone, and my sister checked up on him once a week. But in 2007, Dad went directly from a hospital (where he was admitted for malnutrition) to LTC. Mom and Dad lived in a condo (single floor plan) for many years, so IMHO its a good idea to move to something that has everything on one floor. Even after Dad went into LTC he was still mobile for a number of years, and enjoyed many activities. Its only been in the last couple of years that he has been wheel chair bound. Now he is in the final stages and is not expected to see out the year. It is my belief that Dad could have lived a number of years longer at home but there was no one to care for him, and he refused to allow strangers into the condo. So you could have a number of years before you need to consider placement of your LO.
Along with the falls and mobility issues, there are the other symptoms of Lewy Body that hopefully the medication with help with - specifically hallucinations and paranoia which are also manifestations of this horrible disease.
welcome onewife. a new diagnosis takes a lot of time to rationalize. so much to learn. there are others here that have the lewy diagnosis. many of our spouses have or had overlapping dementias, mine had Alzheimers and vascular dementia but I always suspected a cross with lewy too due to all the early hallucinating. try to consider the later needs you will be looking for in the short term as well as long term. once they get more advanced in the latter stages you will need a lot of help and medical assistance. divvi*
Divvi* interesting you say that about hallucinations in early stages of the disease with your LO. I have often thought that my DH has Lewy Body as well as, based on his early hallucinations and his mobility issues. But his doctor said no - the brain scan did not show any evidence.
Welcome to my website. I started this website in 2007, because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
So in answer to your question - is anyone else going through this? Oh, yes, we have all been through or will go through whatever changes dementia brings to our lives. You will find support, information, and education here.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
This link will take you to the message board discussions on Lewy Body Dementia: - http://thealzheimerspouse.com/vanillaforum/search.php?PostBackAction=Search&Keywords=Lewy+Body&Type=Topics&btnSubmit=Search
If that doesn't work, just go to the top of the page, click "search", and write in Lewy Body, making sure the "topic" circle is filled in, then click "search" again.
There is a wonderful blog called "Peaks and Valleys; living with Lewy Body dementia http://susanmdougherty.me/
Although my husband doesn't have LBD, I read this blog because the author is a wonderful writer and very candid and insightful. She usually includes a quote or two that I look up and that in itself is an enjoyable and insightful pursuit that gives further meaning to her post.
On the left side of her page are links for other LBD sites. The link, Salon: Mourning a Husband Who Has Not Passed, was so touching and true that I copied it off and have given it to my close friends.
Bqd I don't believe enough is known yet about all these forms of dementias. And or how they can overlap among themselves and how they can affect the brain. But that's me all I can say is my own experiences and symptoms over the years caring for my spouse many years. They also would tell me he didn't have Uti and ultimately he would which as we know greatly affects them. I guess my faith in medicine is still wavering. Hopefully in the near future we have something's more viable.
Onewife--to address your questions whether move is a good idea and how long to buy and sell: With AD, experts say to move either very early in the disease or very late. I would think Lewy Body would be the same. I think it would be wise to consider where you want to live "after" when picking a place to move. Since the rate of progression and duration of the dementias is different with each patient, it would be smart to consider where you want to live in the long run. You may move and then ultimately have to consider placing him in a facility, so really your needs should be factored in.
Onewife,excellent advice from MarilyMD.It is exactly what our Lawyer told me early on about the future.I took his advice and have been verysatisfied my decision.