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 Hi all, new on here advice would be good - thanks 
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Joined: Wed Oct 23, 2013 6:31 pm
Posts: 1
Post Hi all, new on here advice would be good - thanks
Hi all

I don't want to make this a sad story but well with this disgraceful disease, it is hard not to. Here is the background:

I used to live abroad and in January 2011 my father said my mom was acting strangely at that time she was approx 58 years old. She had all sorts of tests done but all we were told was that her brain shrunk a bit more than it should have for her age. Well things got steadily worse and in April last year I moved home to assist him and provide him with support. Again things deteriorated and by December we had to get 24 hour nurse aids for her as she was unable to cope, I guess we were also unable to cope any more - to be honest dealing with this disease ruined our life.

My father got diagnosed with cancer in the beginning of May and passed away shortly afterwards. I guess watching his beloved wife suffer with this awful disease broke his spirit. So now its just me.

There is no way she could survive without 24 hour nurse aids - as I have to work etc and I refuse to ever put her in a home as this will always be her home. Our medical aid society BUPA refuses to assist with any of the cost even though we are on the top coverage available and have been for years. They claim she needs 'social care' and that they don't class this disease as terminal. How can they expect me to care for her 24 hours a day whilst still earning an income? Anyway I am not here to ask for money and never will as we do ok but isn't that bad? As if things were not bad enough.

Well, she has to be assisted in everything, she can still stand and walk with help but its getting worse and worse. The main problem I have is that she has started getting fits, it will happen like 6 times in one day then wont happen again for a month. Our doctor has said all we can do is put her in a recovery position, can anyone advise on this?

I can honestly tell you dealing with this on my own, seeing her in the shape she is in everyday is very hard. I have a place elsewhere but I refuse to leave her on her own for any extended periods. I'm not sure if she registers that her husband has passed - she cant string a sentence together but I assume she must. Another issue I have is that as soon as I'm away from home for more than a night she gets the fits again, can anyone shed any light on this?

OK, thats enough from me for now, I guess I could write a novel on this. Please if anybody can shed light on the fits she gets, let me know because it does her no good.

Where does it go from here? I wish she would find peace as she is so agitated most of the time.

Tue Nov 05, 2013 12:36 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Hi all, new on here advice would be good - thanks
Welcome Peter, and sorry for your need to be here. None of us has ever wanted to place our LO in a facility, but that is what has had to happen within many of our family members for various reasons. "Never say never" is my mantra on this issue. I wanted to keep my dad at home and have help come in but not knowing how long he would live, I didn't know if he'd spend all of his money on at-home care. I couldn't see spending $14,000 per month (when he was a 1-person assist) let alone double or triple that when he shortly afterwards became a 2-3 person assist. He moved into a very nice ALF which cost about $5,000 a month for the last 16 months of his life. He was in a clean, safe, beautiful place with people who really cared about him, and I knew I could count on them. It actually was better for him than being at home because he liked having lots of people around, and he could afford to live there for many more years than living at home with in home CGs coming in.
If you are trying to care for your mom at home and work, it has to be a lot of stress on you. What will happen to her if you get sick from exhaustion or stress? Are there other family members who can pitch in and relieve you from the burdens of CGing? You need to consider your own health in all of this because it won't do her any good if you become disabled or ill.
I wish you the best and hope my own ideas on this are helpful or at least give you some other things to think about. Come back here often - there's a lot of knowledge and experience among the people on this forum. 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 Nov 05, 2013 2:30 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Hi all, new on here advice would be good - thanks
welcome peter.. my goodness its been a rough two years for you and your family.. so sorry about your dad... and your mom!!!!.. has she been diagnosed with dementia or lewy body or??? if its one of the first two .. it is terminal.. but she could have lots of good years in between..with the right meds and especially the right doc!!!

what are these fits that she has.. could you explain more?? we are not docs, but maybe we can offer suggestions on where to get some help.. if others have experienced similar fits.

as lynn said, never say never.. after 13 years, im at the point of looking for any help i can get with hubby.. running on tired!! considering all options, including future placement.. but trying to do the best i can... and that is all any of us can do... some have more, what ever it takes, some dont.. for many reasons.. amount of family help., age of caregiver, length of time as caregiver,. and disposition of LO.. calm or combative... or?? and on and on..everyone is different and no one is wrong...

an attorney, early on, said to me... dont hesitate.. place as soon as you feel the need.. you can go visit all day, every day, if you want.. but at least you can get a good nights sleep and occasional break... .. with the duties of caregivers.. most times the caregivers go first.. they are just truly worn out.. dont let yourself get to that place...

hope you can find some help and some days away and also some good answers to help your mom and YOU!!
take care and come back often...

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Tue Nov 05, 2013 7:56 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Hi all, new on here advice would be good - thanks
All great advice, Cindi, and being in the midst of it, you know the demands of CGing. It is truly exhausting and there is no sense in this disease taking out more people. Take care, 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 Nov 05, 2013 9:47 pm
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