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 Hello new to the forum 
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Joined: Mon Sep 02, 2013 1:41 pm
Posts: 3
Post Hello new to the forum
Hello I am new to this forum and am looking forward to making some new friends and gaining some insite on dealing with LBD. I am currently (2 years) caring for my mom diagnosed with LDB. We are together 24/7 and it is a difficult situation to say the least. She is pretty good for the most part as far as memory (her short term memory is shot) but she does know who I am and what is going on around her. She does get easily confused and is scared of most everything.
I do have brothers and sisters but they have families (I am single with no children) so they do what they can. I handle everything for mom from the house and bills to doctors appts and her daily care. She will not accept any outside help.
I am trying to keep her occupied but she has no outside interests other than TV. She sleeps later and later every day and cares for nothing. I get her to go to a seniors exercise class twice a week and minimal activity in her senior center. She has scoliosis and has a hard time walking but she is so stubborn and will not use her cane or her walker, so she finds it easier to sit and watch TV. I do love her but it is very frustrating. I gave up my home, job, LIFE in order to help her but she is just road blocking me. I am so angry with her and we argue a lot but we also coexsist. I do believe she doesn't thing she has dementia but realizes she cannot live on her own. Lately she has taken to seeing worms and webs and I have tried to persuade her otherwise. I have cleaned and cleaned and showed her there is nothing there but to no avail. She is driving me crazy.
Well that's my sad story. l Know there really is no help but just knowing there are others out there that understand what I am feeling and going through (my siblings really don't get it) makes me feel better.
Hello to all from New York


Tue Sep 03, 2013 11:42 am
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Joined: Thu Aug 15, 2013 5:30 pm
Posts: 7
Post Re: Hello new to the forum
Good Afternoon. As you will see above your post, I am also a newcomer here and also from NY... God Bless you for caring for your Mom on your own. It is not easy to say the least!


Tue Sep 03, 2013 12:56 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 273
Post Re: Hello new to the forum
Hi and Welcome to the Forum,
This is a great place to share your frustrations so feel free to come back any time! And I too must commend you for taking on the role of caregiver for you Mom yourself. It's a very difficult job - especially with your own mother! My mother also saw worms in the carpet. We got new carpet as the one they had, had little coloured specs in it. So we replaced the carpet in the house and cleaned and cleaned. My sister-in-law even took the worms my Mom picked up and put in a jar down to the exterminator - with my Mom - to have him tell her they weren't worms but specs of fluff! Nothing would convince her. So, I would suggest you not worry about extra cleaning, and anytime the topic comes up, do whatever you can to change the subject - that's the only cure for hallucinations!! Hang in there and get your siblings to give you regular nights or days off so you get some recuperation time yourself!

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


Tue Sep 03, 2013 7:06 pm
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Joined: Mon Sep 02, 2013 1:41 pm
Posts: 3
Post Re: Hello new to the forum
Thanks for the warm welcome and words of encouragement. I am taking it one day at a time. Blessings :D


Tue Sep 03, 2013 7:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hello new to the forum
Welcome and I sure hope you can get some help and get some time away. Giving up your whole life doesn't seem reasonable OR healthy for you. At some point your mom may become physically too difficult for one person to handle (if/when she loses her mobility, can't transfer, etc.) At that point you will have to either get outside help or find a suitable facility. None of us wants to have to do either of those things, but it is inevitable with this progressive disease. As for hallucinations and delusional thinking - redirecting, agreeing or finding creative ways of dealing with it will make the situation better than arguing. There are lots of posts on here about dealing with this, so you may want to do a search on "hallucinations" and see some of the interesting ways others have handled similar situations.

Also, I'd suggest you begin looking at some help so that when you need it (and you could literally need it overnight like my dad did), you aren't blindsided and trying to make decisions in a terrible rush. You may want to document what is going on so your siblings get a better understanding, or better yet, whether they are "too busy" or not, get each of them to cycle in for an hour or two every once in a while so they have a better idea of what you are dealing with. Plus, it will give you a break.

Do you belong to a CGs support group in your area? Do you live in the Adirondack region? I live in VT and can recommend some CG support ideas if you are in northeastern NY. Best, 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.


Tue Sep 03, 2013 10:50 pm
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Joined: Mon Sep 02, 2013 1:41 pm
Posts: 3
Post Re: Hello new to the forum
Thanks for all your help LTCVT. I will look into the hillucinations I am obviously handling it wrong.
I live on Long Island, NY about 40 minutes East of Manhattan. I have found some CG support groups in the city and have yet to attend as it takes some rearranging of the scheudele to see that mom is cared for before I venture out for an entire day. Im getting there.......


Wed Sep 04, 2013 4:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hello new to the forum
There is so much helpful info. on this forum if you know how to search. So, I'd recommend finding as many posts that will help you with your most immediate needs first, then move on to other topics. There are a lot of very savvy CGs on here who have great advice and tips. All the best to you on this long, difficult journey. 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.


Wed Sep 04, 2013 7:33 pm
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