View unanswered posts | View active topics It is currently Fri Aug 01, 2014 8:02 am



Reply to topic  [ 88 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next
 New Diagnosed 
Author Message
Post 
Dear Sallyanne,
We ARE on our own in finding ways to care for LBD, as I said earlier Doctor's only treat the immediate need,I remember one appointment we had I must have been expressing something negative I can't remember what anymore and the doctor came right out and said he wasn't a social worker, I said to him I understand that but you need to help me get a handle on this. When we are caring for our LO's 24/7 it is a whole different ballgame, in the end for my Husband we had hospice and they were great but they came 1 hr a day I still had the other 23 hrs. :? [/u]


Wed Oct 04, 2006 11:13 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Hi Everyone,
Every day I try to find a little humor with Mom. If I didn't I think I would lose it. Today the lady came to give her a bath, she comes 3 times a week, and she told Nancy that she couldn't take a shower because she was constipated. I just said to Nancy when she told me, "bless her heart"...I wish that was my biggest problem. :-)
Diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 12:29 am
Profile

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post keep smiling
Hi Diane,
Since you shared a funny moment about your Mom, I have to share one. My Mom must internally understand that she should know me, because she will call me "dear" or "honey" but forgets my name. One day she walked (shuffled really) over to me, she had extended her arms while she was clear across the room, so I knew she was coming to hug me. So here she comes shuffle, shuffle, shuffle, all the while her arms out. I get up from the chair and meet her and hug her and she says to me "I love you, you have been a good friend and a good person". So I respond "and a good daughter?". She says "well dang it, it you had told me you were my daughter, I would have said that too". Most people would not see the humor in that, but it made me laugh. She still loves her family, she just doesn't know who they are! :lol: Sally


Thu Oct 05, 2006 1:30 am
Profile

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Hi Sally,
That is cute. They do come up with some funny things mixed in with the heart wrenching ones. I stress all day trying to figure out what to do, how to do it and how I can make her happier and when night comes I always try to come up with something cute or funny for the day and keep that for the thought.
If you don't mind me asking, how old is your Mom? I went back and read your messages and wasn't able to locate any that said too much. Like I said though, I am still learning my way around the site and usually just end up back on the "Symptoms and Diagnosis" part. :-)
How long has she been sick? Did I read that she lives with you or am I confused with someone else?
Feel free to write, it's so comforting to talk/hear from someone who is living it. It is very tough and frustrating.
Another thing Mom said to me tonight is that she wants to dye her hair a nice shade of brown. She has had gray hair with a nice curly perm for ages. When I said to her, "Mom, that color looks really great on you", she said, "Yeah, well then you wear it, you wouldn't, would you?" with quite the tone of voice of like, yeah, right, who you kidding.......I am always coloring and experimenting with my hair...she knows that....It was funny...
Diane :lol:

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 2:56 am
Profile

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Hi Irene,
Just an update on my Mom's meds. I didn't give her the 3 mg of Excelon as prescribed by the doctor when we saw her. I started her off with just 1 a day...1 1/2mg. She is tolerating, no side effects. She doesn't know she is taking it. I will be starting her on the 3 mgs. Sunday after being on the 1 1/2 for over 2 weeks. Don't know if it's doing any good but at least she is not complaining of being sick to her stomach and severe muscle pains.
I was thinking about something. I hear a common thread going through the symptoms and that is "falling". My mother is very unsteady and doesn't walk a lot, in a small unit...is that the reason why I haven't had the falling part. I have to definitely hold her up when we go out. She could and never would go out alone. She has had macular degeneration so that sort of helps in a way with her taking off very far. She stays put and is very comfortable in a beautiful senior unit building.
Just wondering.
Diane
:?

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 3:12 am
Profile
Post 
Hi Diane,
I hope this goes through I wrote some answer's last night none went through, we'll see!
Yes falling very common, reason's they don't pick their feet high enough, they have problems turning and just plain leg weakness.Small unit could be why, I am not sure but smaller seems like she would have more to hang on to. My Husband feel almost everyday and they only way we got some relief is when he went into a wheelchair.Now for a long tme I would transfer him from WC to kitchen chair when we ate and also I would get him into his lift chair, I didn't leave him in WC all day.
I am glad you are giving Exelon another chance and glad she is tolerating it better.I know my Husband had a rough time with it! :)


Thu Oct 05, 2006 4:34 pm
Post 
I must have missed the cute things that are said in the name of Lewy Body, here's one that was priceless,
2 weeks before my husband passed we were sitting in our den, me on the couch him on the lift chair and he looks at me and says" Ya know I don't think my wife would like the idea you are here "I thought about it a moment and said Oh it's ok we are good friends we have coffee together alot, I decided to take this a step further, I asked him about him and I getting together and he thought about it and said yes but what about the children, I said oh they are grown they will be fine with it, he became very quiet for a few minutes and say's No I think we shouldn't she takes really good care of me! :lol:


Thu Oct 05, 2006 4:42 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Irene,
That was very sweet. Your husband sounds like a special man.

I think I must be in denial or something. I keep telling myself that with LBD she doesn't have Alzheimer's therefore she will always know me and just :cry: suffer with the physical ailments of LBD. I guess I have a lot to learn. It took me 6 years to finally accept the Dementia (from strokes) and have only been dealing with the LBD since joining this site a few weeks ago and finally being able to put a name to it..and finally approaching her Doctor with it and having it accepted as the DX....I have a lot to learn and accept. Thank you for all your help. I only hope someone was around to help you when you were going through all your anquish.

:( Diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 6:33 pm
Profile

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Hi Irene,
I just saw your other post about falling. Yes, I see she holds on everywhere she walks. She does not pick up her feet and complains they hurt all the time...and claims that is why she doesn't...legs week and says muscles are gone and has complained of that for a few years now. We just thought it was from no exercise. She sits and watches TV a lot. She lives in a 1 bedroom and luckily she does have lots to hold on to with very clear walkways and nothing to trip on. Her unit is immaculate and totally uncluttered....for that reason in particular; but also because she is OCD about everything in its place all the time...
Diane Hill

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 6:38 pm
Profile
Post 
Hi Diane,
You Mother is a woman after my heart I hate clutter too! LOl
I thought I would like to suggest maybe having some hand rails installed in the areas she does walk, In our other house we had a small hall way and we put handralls in also had one in Bedroom and of course the bathroom.
Your comment about what your Mom says about her legs and walking, Jim used to say he felt like his feet were stuck in mud, Towards the latter months of Jim's illness I would deep rub his feet and legs each morning hoping to stimulate the nerves to get him to walk or at least be able to stand but I have to say other than it feeling good for him it didn't help much!


Thu Oct 05, 2006 8:18 pm
Post 
Hi Diane again,
I didn't see you previous post until after I wrote the last one sorry but I would like to reply, Denial is Ok for a bit and you will come to terms with it!
LBD is very different than a AD, yes with LBD there are memory issues but not like AD, My Husband knew all of us until the very end, yes there were days he got mixed up and called us different names but for the most part he knew us and I am hoping that will be the same for your Mother. The best advice I can give you is Live for today and try to not to concentrate so much on whats going to happen, your Mother is precious to you and those are the memories I want you to carry with you down the road.


Thu Oct 05, 2006 8:27 pm
Post 
Dear Diane,
Yet another post from me tonight, you said " I only hope someone was around to help you when you were going through all your anquish. "
That very statement is the reason I spend so much time here and at the LBDA answering because I didn't have anyone and that was the positive spin I needed to put on LBD, something good had to come out of , it is the only way I can deal with my loss!
If in the end I help just one person with their journey with Lewy Body then it is all worth it !


Thu Oct 05, 2006 8:33 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
this is a test, I have lost three heartfelt letters to Irene...I can't do it again and have them go off into cyberspace. :-)
diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 9:29 pm
Profile

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Ok, I will try, that went through...
What I said Irene is that you are my Angel already with this LBD. I think the other girls feel the same way, as is exampled in their posts...You are our leader and speaking for myself I can never say thanks enough. You are brave and strong and have a lot of courage. I hope to be able to help someone along the way and down the road also. I will never stray from this LBD Disease. I want to do something with it. I would like to try to start a support group in my area. I am looking into it. I can't let this just go by. Right now I am time limited with Mom....I have the computer and I can do what I can do and glad to do it.
I only wish you had someone along your road to help you.
My best to you,
Diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 9:33 pm
Profile

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post Mom
Hi Diane,
Thanks for the interest in my Mom. She is 72, started getting ill in her mid 60's. She has had a strange progression. First she was depressed. That passed, then she started falling, that passed. Now she has memory loss, she covers well and gives generic answers, so that some people think she is doing really well :roll: She has severe tremors in her hands, shuffles when she walks. she processes information poorly. The good news is (knock on wood) she sleeps well and has no swallowing difficulity. During the day, ice cream takes care of any problem that she has :) . We have rented our house out, and are living in her home to care for her. My husband and I both work, so she has a caregiver during the day and the rest of the time we care for her. I think she likes her caregiver better than us! I read some posting from people who are dealing with incontinence (Depends people!), AND some of the LBD patients are still driving and living alone! Maybe they are not as far into the disease as my Mom. But she could never be alone.
Sallyann


Thu Oct 05, 2006 10:08 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 88 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr