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 New caregiver from Virginia 
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Joined: Sun Dec 16, 2012 12:05 pm
Posts: 7
Post New caregiver from Virginia
My mother has just been diagnosed with LBD. It was a relief to have a name given to what we were seeing. Mom had a hip replacement Jan 6th complicated by a small heart attack. She came home on Jan 13th and then had a major stroke on the 18th. The next few months, Mom would occasionally see things that weren't there and she also had trouble knowing where she was at. This was attributed to the stroke. Mom had left side neglect (couldn't see anything in the left, wouldn't turn to sounds on the left ... She couldnt see them). The neglect improved with therapy and we assumed she had problems with visual processing. Mom has not regained functional use of her left side. We are now able to use a slide board and a gait belt instead of the mechanical lift to move her between the chair and the bed. This summer, Mom started to have delusions. She thought my father had married someone else, the morning aide was going through her things, etc. She was having periods that she was inconsolable because she was so upset about her delusions. In better moments, Mom would say she didn't think she was 'thinking right' but she couldn't get those thoughts out of her head. Mom has had current UTIs due to incontinence. Each time, we'd see a drop in her mental status We're currently trying to find a medication plan that will keep Mom from being so agitated and upset.

Tomorrow is a big day. Mom will be coming home from the rehab center again. We're excited, but terrified. My 77yo Dad doesn't want to have help in the house at night. ( Two sisters are only 5 minutes away, I'm 25min). Dad hasn't done any of her personal care by himself. When she's angry with him, she won't let him touch her and she won't take meds from him in that mood. We won't be able to keep up the schedule we had when she was home for two months. We all work full time and have families. Two aides covered 8-12 and 230-630 during the week. One of my two sisters would be at the house by 630am to clean her up and give before breakfast meds. Then we would cover from 630pm til she went to sleep - dinner cleaned up, dressing for bed, personal care, etc. and the entire weekend except for Sat evening. When we were doing this, we thought she'd improve and our time would taper off but now we know different. Dad is adament about bringing Mom home but we worry he's not mentally or physically prepared for this. When Mom was home before, she said it wasn't her house. We moved all of her things, she said, but it wasnt the same house. They've lived there over 45 years.

I could go on and on ... We're just going to have to see how it goes and be ready to change our plans. Best case scenario is that Dad will hire the help needed to keep her at home as long as he can and we can keep her calm!

I'm definitely happy to find this website. My family has already learned so much useful information.


Thu Dec 20, 2012 3:37 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New caregiver from Virginia
Welcome to the forum! I found it an incredible help with information but also with having a supportive group of people who, for the most part, can relate to what you are all going through and will be going through.

If you can get your dad to join the forum, or perhaps look over your shoulder and read pertinent postings with you, it may save him a lot of time and anguish. If I were you or your sisters, I'd also be looking NOW for a facility that is suitable and get on a wait list if need be, just in case your dad and you all can't handle your mom at home. From the sounds of where she is now functioning, it may not be feasible to have her at home after some period of time. It's better to check these places out ahead of time rather than in a crisis situation like so many people have had to do.

It's going to be a lot for all of you to handle, even with care coming in for part of the day, which will be a help. I'd be concerned about your dad's health failing if he is also doing a lot of hands on caregiving. And, just the stress of taking care of a sick LO can be really difficult so pleases encourage him AND yourselves to take care of your own health as well.

I hope things go ok when your mom gets back to her house and perhaps they will find some meds that can reduce her symptoms. Sorry for your need to be here and I know how hard it is. 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.


Thu Dec 20, 2012 8:08 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New caregiver from Virginia
Welcome to the LBDA forums and it certainly isn't a place a person wants to be but a great place when needed.
Sounds like the family certainly has a great deal on their plates, even if you were to all continue on what the 3 of you were doing before, realistically how long could you all keep that up? Something will have to give so I hope your Dad see's things clearly before long. I know of a family of 10 children who all tried to pitch in and it became too much for them as like you and your sisters they all had jobs and their own families !

Good luck and I hope you find some comfort here along with helpful information!

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Irene Selak


Thu Dec 20, 2012 9:57 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: New caregiver from Virginia
@AJSUTTER. I am also from Dumfries Va and have lived thos journey with LBD since July of 2008. If Mom is having problems moving have they evaluated her for possible Parkinsonism? My LO was diagnosed with Parkinson's in 2004 and then in 2008 changed to LBD with Parkinson's. She has problems standing and leans all the time. All the information you posted I have been through. I am her husband and she doesn't fight me with the catheter but I have to get her in the right mood. Same with medications. I just now had to start feeding her before the medications. She take Sinement, Seroquel, Exelon Patch 13.3mg and namenda. I don;t see where these medicantions have made much difference. She was on Sinemet 3X daily and when they went to 2X daiy because of hallucinations I did not see a difference in anything. So I wonder if the Parkinson's medication does any good. Also the Exelon patch causes UTI's. When my loved one (LO) has a UTI my life is really miserable. If I can be of any help please contact me here or mariesmac@verizon.net. I'm in the Four Seasons in Dumfries and try to help anyone I can. remember that any advice is based on our knowledge and I am NOT a doctor. Just one who has experienced this terrible journey


Mon Dec 24, 2012 8:30 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: New caregiver from Virginia
Oh yes, there are no support groups for LBD here in the Northern Virginia Area. There is one in Virginia but 4 hours south of me.


Mon Dec 24, 2012 8:31 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New caregiver from Virginia
Has anyone tried to look into Alzheimers to see if there is possible group there and often they will include LBD if they know someone is in need of that type of support !

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Irene Selak


Mon Dec 24, 2012 11:40 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: New caregiver from Virginia
Yes I have, there is only one that has any information about LBD. There was a good one but the group disoved after the leader departed. The one that does have informaton only meets at nights after 7PM which I can't do as I can't leave her with someone else at night. She becomes frightened that I hve left forever.


Mon Dec 24, 2012 11:50 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New caregiver from Virginia
Mac,
Have you told them that the evenings are too difficult for you and perhaps they will keep that in mind and could form a daytime one, we never know until we ask !

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Irene Selak


Mon Dec 24, 2012 2:55 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: New caregiver from Virginia
Thanks I will try that. I think the person running it works in the day. He was aorking for the Alzheimer;s association running the local office but the Alz Org decided we didn;t need him here. He now works for Sunrise Living. I'll ask him.
Thanks and Happy Holidays


Mon Dec 24, 2012 3:38 pm
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