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 I'm a newbie 
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Joined: Mon Nov 24, 2008 3:21 pm
Posts: 9
Location: Melton Mowbray UK
Post I'm a newbie
My Father has Lewy's and I think he is in the final stages of this awful illness. He is in a Nursing Home in Leicester and I don't seem to get any answers from the carers there. I am not in contact with his wife ( my Step Mother) and because I have asked questions about his care on numerous occasions I am considered a bit of a pain.... I have read a lot of the posts on your site and find them very informative and very moving. Up to 2 weeks ago my Dad was mobile, able to feed himself and could recognise myself and my sister on our visits. Since last week he has become a totally different person, unable to walk, finding it hard to swallow and cannot feed himself, the most upsetting thing for me was the total lack of recognition and ability to speak( even though he did not much made sense before) I did get a smile I think...I asked the carers for information on Dads decline but all they say is.. it's a progression of his illness!!!.

I have so many questions.

How long will we have left with Dad.?.

Is he in pain ?

Can he understand what is happening to him? ( God I hope not)

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Helen


Mon Nov 24, 2008 5:27 pm
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Dear Helen,
Welcome to the LBDA forums, I am glad you found us and I hope we can be of some help to you in your quest for some answers, Often when there is a sudden down turn it could mean some sort of infection, LBD'ers don't handle UTI's or pnemonia very well and yes this can be common, those are the things I would be looking for and also if they have been given any Neuroleptic drugs, such as Haldol. Please visit the LBDA the link is below my name there is much information there.
Good Luck!


Mon Nov 24, 2008 5:39 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Helen --

I am sorry for all your grief over what your dad is experiencing. Irene is correct -- check with the nursing home to determine whether he has been thoroughly checked for any type of infection -- urinary tract would be most common, but it could be something as simple as a tooth or gum infection. An infection can cause a major and unexpected increase in symptoms, which can subside once the infection is treated.

Are hospice services commonly available in the UK and can they be arranged for your father?

And, I know this is a sensitive subject, but I will share with you my thoughts about your stepmom (being a stepmother myself to five adults, none of which are in close touch).

Please find it in your heart to reach out to her right now and simply let her know that you feel for what SHE must be going through, and if she needs someone to talk to who loves your dad/her husband as much as she does, she can count on you.

If you don't feel you can call her, e-mail or write her. I guarantee, you will both feel better no matter what does or does not happen between you two, you might find her sharing more information with you, you can join forces to see your dad gets the best care possible at the nursing home, and know how much it would mean to your dad if he knew you had reached out to her this way.

It takes a strong woman to do what I'm suggesting -- I bet you are strong enough.

Our thoughts and prayers are with you!

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Renata (and Jerome-in-Heaven)


Mon Nov 24, 2008 6:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I agree with what's been said already about determining if there is an infection or something that would account for this sudden decline.

You might also contact the Lewy Body Society in the UK for support.

Given the dementia, he is probably not aware of his own situation.

I would assume he's not in pain unless he indicates that he is.

You might spend some time looking at the excellent info on the Lewy Body Dementia Association website.


Mon Nov 24, 2008 8:11 pm
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Joined: Mon Nov 24, 2008 3:21 pm
Posts: 9
Location: Melton Mowbray UK
Post 
Hi ALL
Thanks for your thoughts and words on my Dads situation. I am going to his nursing home again on Thursday so I will definately be asking the questions about any medication that has changed. Dad had a bit of a cough on Saturday so I hope that hasn't got worse, or maybe that accounts for his sudden deteriation and maybe he will get better when it has been treated. Renata - I understand what you are saying to me and beleive me I have tried to reach out to my Step Mother but I can only stand so much and I truly believe she has only her best interests at heart, and not what was best for my Dad. I helped find a lovely Nursing home for Dad with the help of My Mother in Law and younger sister, all was agreed and Dad moved in straight from a hospital stay, it was walking distance from Mother in Laws house and had great facilities... Dad was quite traumitised with the move ( 5 years ago) but we thought it would be his last move. I went to see him a couple of days later with my sister only to be told he was gone....... you can imagine the anguish... what the carer meant to say was he had been removed from the home!.. No explainations I was told it wasn't the right place for him... He was moved to a shabby cheeper place that even though I have tried every avenue to have him moved he remains to this day.. He suffered 3 broken wrists within 3 months and I was told it was because he forgot to use his stick, or he tripped over , or we don't know how or when it happened!!! I know this may sound trivial but i seem to be battling against her all the time, even to get a television in his room apparantly it would be a waste of time he wouldn't watch it! I bought him a new one anyway.. sorry for rambling

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Helen


Tue Nov 25, 2008 4:55 pm
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Helen,
All rambling is welcome here and I am sorry it is such an uphill battle with your step mother. It's a shame she has so much authority over his care and moved him to a not so nice place. I sure as his daughter this has been hard but there really is nothing you can do except be there for him as his daughter. Maybe he would enjoy some music he could listen to!
Just know we are here for you and when you need to ramble agin we will listen and not pass judgement.


Tue Nov 25, 2008 5:06 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Helen --
If THAT'S the way his wife has behaved, then SCREW HER! Continue to love your Dad and be there for him. And trust me, the kharmic wheel turns slow but sure and what goes 'round comes 'round ... she will bring back to herself all that she has wrought on others.
Thinking special thoughts for you today ...

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Renata (and Jerome-in-Heaven)


Tue Nov 25, 2008 5:17 pm
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Joined: Mon Nov 24, 2008 3:21 pm
Posts: 9
Location: Melton Mowbray UK
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Thanks x :) You have given me a smile, the first in a while...

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Helen


Tue Nov 25, 2008 5:28 pm
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