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Joined: Sat Jun 15, 2013 1:23 pm
Posts: 3
Post Hello
My 89 year old mother lives with me and has LBD. She has lived with me for two and one half years. She also has peripheral neuropathy . The neuropathy is the reason she is bed bound. When she first moved in she was able to sit up,and was able to sit in a wheelchair. But due to inactivity she is no longer able to get up or even sit up in the bed. She gradually went down until she is where she is today. It is getting to the point where sometimes I just do not know what to do. In writing this I have erased as much as I have written. It is difficult to talk about her without telling everything that is going on. I hope to read about others who are experiencing some of the same situations where we will be able to help each other.


Sun Jul 07, 2013 10:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Hello
Welcome, Jennifer. This is a community of many people who are or have shared many of your experiences. If you have specific questions or issues you want to discuss, if you write them in the appropriate forum topics you'll be more likely to get responses. Also, if you haven't already done so, I'd suggest reading as much as you can on the forum and elsewhere so you have information that will help you care for your mom.

Are you physically able to help her in and out of bed? If not, do you have aids coming in to help you? Please be careful not to jeopardize your own health and safety by doing more lifting that is good for you. Do you have someone coming in who can relieve you of your caregiving duties a few times a week? It's so important to take care of you as well as you taking care of her.

Don't worry about writing too much! Whatever you need to say is fine. We are all very supportive of one another here and there are also people on here who can help you understand more about other topics too, like which meds to stay away from, or what kinds of adult "depends" work best, or you-name-it. I hope you come back as often as you need to. Lynn

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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.


Sun Jul 07, 2013 11:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello
Welcome, Jennifer! You will write more in time but now would be a good time to read as many old threads as possible. You will see that all of us have been through anguish with this disease. Even if you don't learn anything new--and you probably will--just knowing that others share your situation will be a blessing to you! Hugs and prayers!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 08, 2013 12:18 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 275
Post Re: Hello
I will also say Welcome Jennifer! It sounds like you have a lot on your hands. This is a great place to write what you're thinking and get some great feedback - and lots and lots of experience! Do you have any homecare support?

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Jul 10, 2013 2:03 pm
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Joined: Mon Oct 01, 2012 11:24 pm
Posts: 15
Post Re: Hello
Hello and welcome to LBDA's Forum. I am pleased that you reached out to this online community. You will find that the members are very helpful and provide great comfort and support.

Yours in service-

Toy

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LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator


Wed Jul 10, 2013 2:54 pm
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Joined: Thu Jul 11, 2013 6:25 pm
Posts: 5
Post Re: Hello
Hey Jennifer,
I am new here too hope we can all support each other in fighting and accepting this. Take care and let us know how you are doing.


Sat Jul 13, 2013 3:26 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Hello
Joe, like every one else tells you, "its like a roller coaster ride". I would like to add "a BAD roller coaster ride". (I used to like roller coasters when I was young) To me it seems like about three times a week LO will get confused and agitated. One thing that helps at our house when he gets like that is music. I use this time to put on his favorite music and he will calm down and become very engaged with the music. At this time we are using CD's but I think I will invest in some DVD's also to help him. The other few days each week we function fair. He is still able and enjoys grocery shopping with me. I try to pick a time of the day that I know the store will be slow as he is slow and I don't want to make people wait in line for us, because he still considers taking things out of the grocery cart and putting it on the check out line his job. Also when we get home, he will not let me carry groceries from the car to the kitchen. That's his job. I try hard never to do anything that he is still capable of doing although those things are getting fewer and farther between. Many times it would be easier to do it myself but he still wants to be productive. Hang in there. We all care.
Mary


Mon Jul 15, 2013 12:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Hello
Mary - you are lucky he is still so functional! Carrying groceries - oh my! That means he is still mobile, and that is a BIG DEAL compared to a person who loses their ability to walk, and loses that and all other ADLs literally overnight. Keep him busy with those chores, no matter how small they seem. You will look back on that some day and marvel that he was able to do those seemingly small things, like buttoning his own clothes, walking, carrying things, unloading the grocery cart, etc. Does he help you vacuum? :lol: If so, can I please borrow him? :lol: 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.


Mon Jul 15, 2013 9:02 pm
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