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 Extremely concerned about my parents ... 
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Joined: Fri Jul 30, 2010 11:59 am
Posts: 2
Post Extremely concerned about my parents ...
Hi,

My name is Beckie and my Dad has LBD and is rapidly declining. He's 66 years old and my 65 year old mother is taking care of him. She currently has 2 visiting nurses visit twice a week, each for 2 hours at a time. She also has a volunteer from hospice visit once a week for a 4 hour stretch. She is very small and frail, weighing only 104 pounds. Due to my Dad's rapid decline it seems that just as they reach a plateau that is manageable, he declines again and she is left confused and helpless. We are in the process of looking for a more available personal care aide that can help my mom more often.

Yesterday my Dad got into his pills (they have since been locked away where he can't find them). My mom discovered that he had taken too many Klonopin and found him almost completely unresponsive. The visiting nurse took his vitals and found that they were ok, but he became increasingly hostile as he awoke from the medication. He was up most of the night and my mother is completely exhausted. I have 3 young children and am not always able to be there with her to help, especially during the evening hours.

My Dad has been telling my mother that she doesn't take care of him correctly and telling the nurses that she doesn't care. This is absolutely not true, and not like my father at all to say such things. He was always extremely protective of her until he became sick and since then his personality has slowly changed to one none of us recognize. I'm afraid for both of them and wondering when it is time for the child to step in and encourage a nursing home or some other solution ...

My father has been saying things like "I'm a dead man walking", "I don't want to live like this", etc. which makes me fear that he is contemplating suicide (if that's even a possibility in his mental state).

I am here in the forum most every day learning from the informative posts - this is my first post. This forum has been such a help in so many ways, thanks to everyone for listening.

Beckie


Fri Jul 30, 2010 12:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Extremely concerned about my parents ...
Beckie,

When you are concerned about the safety of either parent, that's the time to step in. I guess how you step in is the key question. Are there other children who can be involved with you? Can you get a priest or other religious figure to help you? Can you hire a geriatric care manager who is also a social worker to facilitate a family meeting, and find your family a good health care agency to work with?

Is there a local Alzheimer's support group nearby that your mother can join? Are there any caregiver training classes offered on dealing with psychosis and other dementia-related behavior?

This is a bad situation that will get worse unless something is done.

Is your father receiving proper medication?

Are the "visiting nurses" who are coming actual RNs? You probably know that nurses are not necessary at this point. You need sitters or aides.

Robin


Fri Jul 30, 2010 12:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Extremely concerned about my parents ...
If he is on Hospice, is there a social worker connected to that organization you could work with? Sound like a family meeting might be in order. It might be necessary to start looking at dementia care facilities, many of which have long waiting lists. It's probably not something any of you want but it's a decision many of us will have to make at some point. I'm looking at future placement when my husband gets to the point he becomes completely immobile, as I can't move him when he's like that and he has these intervals more and more often. I wish you well! This is a very helpful forum.

_________________
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.


Fri Jul 30, 2010 1:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Extremely concerned about my parents ...
Hi - you are right to be very concerned at this point. You don't want your mother to wear out and your dad has lots of issues. I wouldn't worry about what he says to his nurses or aides - if they have worked with dementia patients they know that lots of things that are said are not reality for the rest of us.
If he is on hospice presumably they think he is in the final stages, however, like others have said, you may want to look for a facility if/when he becomes immobile. One person alone cannot lift and carry another adult generally, and your mother obviously cannot handle that amount of weight. I'd get on that ASAP because with dementia, things can go downhill extremely fast and a facility could be required at a moment's notice. (I have experience with this!)
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.


Fri Jul 30, 2010 1:59 pm
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Joined: Fri Jul 30, 2010 11:59 am
Posts: 2
Post Re: Extremely concerned about my parents ...
I have been reading your posts and can't thank you enough for your responses. Every suggestion helps so much!

We spoke with our social worker today and she gave us the names of a few agencies - we contacted a few home health aides and set up interviews for both tomorrow and Sunday. I'll let you know how they go ...

My father's LBD has gone downhill incredibly fast since the beginning of this year, yet the rest of his physical health is fairly good. They can't confirm a diagnosis that would allow for hospice to step in. We feel my mother really can't handle the brunt of the caregiving anymore physically or mentally, so a full-time dementia specialized caregiver may be our best option at this point ...

Thanks again for your support,
Beckie


Fri Jul 30, 2010 7:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Extremely concerned about my parents ...
Good for you Beckie, sounds like you are getting things even more organized and under control. That will take a big load off to have a skilled caregiver. Sending you lots of good wishes, 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.


Fri Jul 30, 2010 9:00 pm
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