I am new to this board and could really use some support about now. Are there different stages of Lewy Body Disease, or is it the same as the Alzheimers? My Mom was diagnosed back in 2006 with this horrible disease. I took her in for evaluation because of hallcinations and the report came back from the Doctor as Diffuse Lewy Bodies. I was told that it had probably been going on for some time because memory loss usually starts about a year prior. My Dad had passed away in 2003 after being married for almost 58 years. I can't imagine the trauma from that. You loose your soulmate after all of those years and have no one to go to bed with and wake up with. He was her life.
Okay, now back to my story. When I was in there on Wednesday for when she was having an ultrasound done I noticed some torn paper on the floor. I didn't pay much attention to it at the time because I was focused on sitting on the bed with her holding her hand. My Mother over the past year has been going in and out of conciousness. She will just lay there and not hear you or feel anything. At first I was told it was mini TIA's but now find out it is part of the disease. I am aware from what I read that this Lewy Bodies advances more quickly than Alzheimers, is that right? After about 10 minutes she came out it and then fell to sleep. Her vitals were normal.
After she went to sleep, I went over to the paper that was on the floor. Come to find out, it was my Son's picture torn up. I broke down. She had just spoken with him on Sunday. I take my cell with me because he likes to talk with her. She seemed fine and even asked him how were the kids? I realize that this is part of this disease, but really had a hard time with it since she loves my son so much. I also could not locate my sister and her daughters picture. (No big loss) but won't get into that.
Just when I think that I have my emotions under control, it seems something else happens. My Mother and I used to do so many fun things together and yes I do have wonderful memories. I think that is why it is so hard seeing her like this now. She can still talk but most of it makes no sense at all. She curses and says words that would never have been in her vocabulary before. She is unhappy and depressed. She is on Celexa, baby aspirin and a mild diruretic. She does have congestive heart failure and chronic Atrial Fibilation. So if she were to fall and break something she could not be operated on because she would die on the table.
I guess the reason for me writing is because, I can't for the life of me understand why these beautiful people have to go through this. And yes, when you say it is harder on the caregiver that is so very true. I have been to therapy over and over. I realize that the life span of this disease is shorter because of the advancement, but are the stages the same as with Alzheimers the same and do you have to have every symptom on the list in that stage? If not, then my Mom would be in the last stage.
Well, I have been longwinded enough for a first timer on here. I wish to pray for all of you caregivers out there because it is not an easy thing even though they are in a facility you are still the one facing every crisis and every change that they go through.
Thank you one and all and any feedback is certainly welcome.
Thanks for the reply. I am already on Klonopin and have upped my dosage twice. I have been on anti-anxiety meds for years. I have tried antidepressants but they always counteract with my klonopin. I am very sensitive to these types of meds. I wish that I could be one of the tough ones but its the seeing her go downhill that does me in. I don't go as often as I used to. My husband told me that was only hurting me more. She has no sense of time anyway. My Mom is in a Alzheimers care unit and it is secured where she cannot get out. They also recently put braclets on them which I though was an excellent idea. I am going to go to one of the support groups that they have next Wednesday. I was going to another one, but dropped out because it was not helping me any.
Thank you for sharing that with me. My Mom and I are extremly close. Sometimes she calls me by my sisters name and that used to bother me but not any more. She does recognize my husband as well which is good. When I visit with her, I always hold her hand and give her hugs throughout the time that I am with her and tell her how very much I love her. And when it is time to leave then I never say good bye I tell her that I will see her later and another hug and kiss. She is a very depressed person and they have her on medication for that.
Sometimes I think that losing a loved one could bring on this disease. I hear that so often that once once spouse goes the other can possibly come down with it. I am not sure how true that is. She does have menenogomas in the brain which I am sure by now have grown. But I am not going to put her through another MRI. That would not be fair to her. I want her to have to best quality of life as possible. She was living with us for a while, but she tends to wander and that put the fright into me and thought I am not trained in this and needed to find a professional place for her to be. Although, she is in her 4th place now and I simply love it. The people are wonderful with her as well as they communicate with me which I never had that before.
Well, I better get a move on, I am going down to see her now.
Thanks again for your letter and God Bless You!
I did manage to navigate to the Lewy Body site. Thank you again for your caring.
Good Morning Lyn,
Well, this is the second time this week that I have received a call that she has broken her glasses. I had bought her one of those bands to hook on her glasses, you know one of those ones that bikers use. So, I am going down there today and taking the glasses and going to Walmart and get some heavy duty frames if there is such a thing. She has been declared legally blind so I don't know how much good they are to her. The problem is that she cannot go with me, because she is so disoriented and with my anxiety I can't handle it.
I am frustrated and I hate this disease. I love her so much and just have to try to remember the good times that we shared when we went on vacations together and laughed so hard we cried. I wonder why God put those people that we love through this H _ _L? I find some comfort in listening to Christian music and church and know that one day God will take her home to be with him. My father is waiting for her. I also find comfort in getting in the pool and turning on music and dancing. I think that helps me more than anything else because I am helping my body exercise and my brain isn't on overload.
Thank you so much for your care and interest, it means more to mean than you know. But then again, I am sure that you understand.
Post Edited By Moderator (AlwaysRosie) : 9/13/2008 6:51:23 AM (GMT-6)
Post Edited (Howlyncat) : 9/17/2008 4:38:50 AM (GMT-6)