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Joined: Tue Oct 09, 2012 11:29 pm
Posts: 11
Location: North Bonneville, WA
Post New here
I have been married for nearly 31 years to a wonderful man. In the last 5 years, some changes have taken place, slowly at first, then more difficult to ignore. He lost his sense of smell, and lost about 50 pounds. He (who loved life and loved to eat) just stopped eating. We noticed him asking the same questions over and over. His sleep, always restless, became thrashing and yelling all night, and when he tried ambien, he became really weird.
Eventually he did a test of his memory and ability to plan, etc. and it was obvious that something was wrong. I am an RN and had never heard of LBD, even though I worked in a dementia unit for a few months out of nursing school. The symptoms fit well, except that he lacks hallucinations and has no movement/parkinson issues. He is on rivastigmine, which doesn't seem to do much.
Here's my confession: right now I am feeling really sorry for me. I miss my fun, smart, sexy husband. I resent that I am left to clean up the financial mess that he created over the last few years. His main contribution is saying things like "it will all work out". I don't feel like it will. I am sad all the time, and I have to work hard to not be impatient with him asking the same questions.
I have really no idea how this disease will progress. I can't stand the thought of not growing old with him. We have three beautiful grandchildren and one on the way and they adore him. Sorry for this rambling, this is the first time I have really expressed how I feel and it is coming out really selfish. Anyway, I am happy to have found this forum, and would appreciate hearing from people who have dealth with younger people especially going through this.

Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.

Fri Oct 12, 2012 1:59 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New here
I am so sorry to hear about your situation. My connection to LBD is that my 88 year old mother has it, so I cannot relate directly to some of your sad experiences with your husband. But I can tell you this. You need to read, read, read about LBD. We caregivers are the best advocates our loved ones have. A lot of medical professionals know little or nothing about LBD so we cannot assume that if we take our LOs to the hospital or the doctor, our LOs will receive appropriate care. (If I had a nickel for every time I have told a nurse that my mother has LBD, and the nurse replied, "Oh, yes, Alzheimers is such an awful disease," I could retire now!) Use the archives on this forum, too, and don't hesitate to post questions.

Best of luck,


Fri Oct 12, 2012 3:17 pm

Joined: Tue Oct 09, 2012 11:29 pm
Posts: 11
Location: North Bonneville, WA
Post Re: New here
Thank you for your reply. Re-reading my introduction, it seems like everything I wrote was about me. I have had a very whiny few days. I know there are other people out there in similar or worse situations. I just love my husband so much, and sometimes he doesn't seem like him any more.
I really like the neurologist that we see, and so does Mike. The problem is that when Mike goes in, he seems perfectly normal. They talk politics and sports and guy stuff, and I don't think the doc realizes how bad things really are. I feel like I am the downer when Mikes says "yeah,I think I'm getting a little better", and he seems like a normal guy, and I say "not really". Then on the way home he doesn't remember anything the doctor said.
I read that this disease has an average lifespan of 7 years and I can't even IMAGINE that could happen. Maybe I am in denial. I just wish I knew what to do.

Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.

Fri Oct 12, 2012 3:52 pm

Joined: Sat Sep 06, 2008 3:16 pm
Posts: 11
Post Re: New here
I am sorry for what you are experiencing. My LO is my 79 year old mother so I can not relate to what you are going through with your husband but I can share in your resentment. I find myself saying "this is not fair" and "this is not the way it's suppose to be" over and over again to myself. It's not fair that my 9 year old son could not have his grandparents at his schools Grandparents Day this week or the past four years. It's not fair that my dad spends his days by my mom's side and doesn't get to live his own life. I could go on and on. If we don't vent and share what we are thinking we will go crazy. One thing I have learned from this forum (and am so grateful for) is that someone is always here to listen and somebody can relate to what you are going through and offer support and guidance.
In regards to your husband's doctor...don't be afraid to call him and share your concerns. That way you can give him a true picture of what is going on at home and not be uncomfortable sharing these things in front of your husband. It sounds like you have a good relationship with the doctor and my guess is he will welcome your input. We had to do the same thing with my mom's primary doctor because my parents were not sharing the true nature of what was going on. We were so thankful we did because he then recommended a new neurologist for my mom and she was the one that gave her the LBD dx. We feel a little guilty that we did this behind their back but I would do it again in a heartbeat.
Never forget that you have every right to feel selfish and rant about this awful interruption to your life. Make sure you make time for yourself. Have you checked on the main page on the website to see if there is a local support group for you to attend?
Best of luck to you and your family!

Fri Oct 12, 2012 4:24 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New here
Dear ddaschel,
Welcome to our LBDA forums and I am sorry for your need to seek out such a group . I didn't think you came off sounding selfish at all, in marriage as the years pass we 2 mesh almost what seems 1. It is very sad. I think the best you can do for yourself is educate yourself the best you can on this illness and take things day by day and not look to far into the future as all our situations are so very different. Please spend time checking out the web pages, join support groups.

I wish you well !

Irene Selak

Fri Oct 12, 2012 9:45 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: New here
Welcome to this great support media. I'm sorry you have the need. I too felt my first post sounded whiney and selfish but nothing could be further from the truth. If not here, where? There has to be some way and some place to unleash our frustration, sadness, grief. With the challenge of finding those in the medical profession versed on LBD, finding this forum was a life-line for me. Our first neurologist was a waste of time. The second one had heard about LBD and said you don't want him to have LBD. He went with a diagnosis of Alzheimer's though I knew it was more than that. A friend of mine, early on, bought me a book entitled, Dignifying Dementia. I had spent time over the previous weeks talking about my husband's symptoms, fretting over what to do. She thought this book may help. As it turned out, the book is about man with LBD. All the symptoms his wife described were exactly what my husband was experiencing. Reading it encouraged me to keep a journal, thereby allowing me to have facts to present to the doctor. Once in the office, I could never remember the specifics about what my husband was doing, how often, and when, and his demeanor during the office visits didn't present as one with a serious dementia. Sharing the journal allowed the doctor to imagine all that we were going through and to understand what we were dealing with. From there, I've continued to read all I can get my hands on, starting with this website. Our doctor admitted he didn't know much about LBD and referred me to UCLA which was the best thing he could have done. It's quite a drive from where I live but having them as a resource has been a godsend. Often we feel as though no one could possibly understand what we go through each day, the unpredictability of this disease. I know I'm constantly on edge wondering what's going to happen next. Like watching someone grow old, you don't really notice the subtle changes until you go back and read your journal. Then you realize how much this disease has taken from your spouse and from you. Don't ever be shy about exposing your hurts or your needs on this forum. Like I said, if not here, where?

God bless,

Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.

Sat Oct 13, 2012 12:19 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New here
I also want to welcome you and all the others have given you some good heartfelt advice. It's good to let those negative thoughts and feelings out, and believe me, I think we have all had them at one time or another. My dad has been gone 2 years now, and I am finally feeling like I can enjoy my retirement the way I had planned to. My health is better, although I have a lifetime legacy of a stress-induced issue from NOT taking care of myself as much as I should have, while trying to be a good CG for my dad.
I think I would have totally lost it during his last 2 years if it weren't for the caring and experienced folks on this forum. There was many a time all I could think was how unfair this disease was to me, him, our family, and then the "what I am going to do now about this new situation/symptom"? My friends here came through and it was a safe place to come in the midst of a truly nightmare situation for my dad. Lots of great advice and info. on the forum and other LBDA resources.
Take care of yourself while you are being the best CG you know how to be, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Oct 13, 2012 1:11 pm

Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: New here
Dear ddashel,
Your post brought tears to my eyes because it so mirrored what I have felt, am feeling or will probably feel tomorrow because just as LBD symptoms fluctuate tremendously so do my feelings of anger, grief, sadness, and impatience.

My husband was diagnosed in April 2012 but probably had it 2 years before and maybe even before that. I too am sorry you have the need to be on this forum but I am so very glad you found us. It is a life line for me and I know it can be for you too. Vent all you want, cry all you want....this is the right place for it because no one knows what this is like for a caregiver unless they too have walked in our shoes with LBD. I am currently reading Caregiver's Guide to Lewy Body Dementia and I encourage you to buy it on Amazon. It is a wealth of information as is Treasures in the Dark. Both are filled with such
valuable information.

Most of the time I am what I consider very patient with my husband but not always. I too beat myself up when I lapse in that area but we need to ask ourselves this...does not this disease beat us up enough without our doing it to ourselves. We are all doing the best we can at any given moment...last night I was short with him because I had somehow hurt my back and it felt like it was going to be a serious issue...lo and behold I put some patches on it, took a low dose hydrocodone and no pain this morning.

Be kind to yourself because Lewy is not kind to us or our LO....and ya know...if we at times do whine (and you weren't), so what. God doesn't give us more than we can handle but I've always believed that there are times in my life when I feel He is really pushing the envelope. Just my opinion.

There is another LBDA website that has been helpful to me too. If the moderator says it's ok for me to add it I will. We are all here for you as you are here for us...even if you may not think so now, your post reminded me I am not alone...ever.

Sat Oct 13, 2012 3:02 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: New here
Dear ddashel, you are among friends who understand and who either have already taken or are in the midst of the same journey. It is normal to feel what you are feeling.

My husband, John, was diagnosed in 2007 with LBD. I am considered to be a strong person by everyone who knows me, but I fell apart in several ways for a while. Some things are just so huge in life that they are going to throw you for a loop. But that does not mean that you will never be happy again or never find your feet. You will. And you are not alone.

As much as all of us here hate this disease and what it does to everyone it touches, it is still doable in terms of caregiving--- but not if you think of it all at once and try to solve everything everyday.

But if you can focus on what is right in front of you, right now, it is doable. Take it one day, even one minute at a time. If you believe in God, ask Him to help you deal with what is right before you. Even ask Him to show you blessings, and He will. I know this because it has happened to me. You will get stronger bit by bit as you learn to stay in the present moment and do the things that you can to make things better for you both.

Read and learn what you can, but only when you feel you can handle it. It is possible to get overwhelmed by too much information and start to play the "what if" game. With LBD, it is different with each patient. So some horror story that you read about one person may never happen to your husband and you. Be careful about reading too much about end stage stuff if you have just received the diagnosis. Take it slowly and learn the basics of LBD caregiving one day at a time.

There is another excellent site for LBD spouses that you may also find helpful. Here is the link to it:

Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Sun Oct 14, 2012 1:07 pm
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