Hi My name is Pam and I am new here. I am a caregiver to my mother-in-law who has been diagnosed with Lewy body dementia. It has been a roller coaster ride with being told 3 years ago she has dementia and then being told no she don't have it. Then after being told she don't have it wondering why they kept her on Aricept. We finally got her doctor to refer her to a specialist who said she was in the beginning stages and also that she has Parkinson's. Just recently we took her for a sleep study due to dreams and not sleeping. This doctor has specialized in Dementia and after discussion and examination told us she had Lewy body and that we needed to start checking into assisted living for her in the next 6 months to a year. Out of a family of 12 kids it is just myself and my husband and 2 siser-in-laws that take care of her. The doctor warned us that she will start getting physical with us sooner than we think. I am not sure how I will be able to handle that so I am trying to prepare myself for that.
My mother-in-law now has loss of appetite and has lost a great deal of weight. Unless we physically sit there with her to make sure she eats she won't eat like she should. She has no energy during the day. We can go to her house anywhere from 9:30 - 10 in the morning and she is already napping. We try to keep her active and make her do excercises but again unless we are there she usually won't do them. She has dreams at night that she says prevents her from sleeping and so now they are going to try taking away certain meds and try a new one. She has fallen and usually it happens in the middle of the night. I am the one who gets these calls at all hours of the night. We usually just have rescue come and help get her up and check her over to make sure she is ok. She is suppose to be using a walker at all times but we have caught her a few times without it. We scold her for that but not sure if we should be doing that.
On top of all of this she has diabetes so we have to monitor her blood sugar which she is able to do and then we just check to make sure it was done.
She has lifeline so she can call for help immediately. We had nursing coming in to help with showering but that ran out and so now because the nurse told my mother-in-law that she could shower alone she does. We told the nurse why we don't want her showering alone. We don't want her doing it alone because she takes her lifeline necklace off while showering and if she falls and can't get help no one know she is in need of help. We had the nurse try to discourage her from showering alone and she won't listen. It's fine for her to shower herself but only when someone is there with her.
Right now most difficulty is dealing with her saying hurtful things about other people and I know that is part of the dementia.
Like I said before I am looking for support to prepare myself for being able to continue to do caregiving for her and what I am about to face down the road. Didn't mean to ramble on but needed to show what we are dealing with right now and the frustrations we have encountered with different diagnoses.
