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 FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD 
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Pat,

It's interesting to me that you and I have essentially the same visiting schedule. Two hours in the morning for sure (for us, 6:30 am to 8:30 am) and two hours in the evening for sure (6:30 pm to 8:30 pm). These are the times that my LO and the CGs at the facility need the most help. I wonder if this is true for others?

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Apr 14, 2011 10:54 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
It sure was overload time where my dad lived. There were so many people who had to be lifted or helped out of bed, then dressed and taken to breakfast in the AM and the reverse at night. And then there is shower/bathing time. Can you imagine how long it takes to give our LOs showers or baths and then get them dressed again? I don't know how they take care of that many people in those few hours. The CGs at my dad's ALF also set the tables, served the food, and cleared the tables in the diningroom all 3 meals a day. I think they should be up for sainthood, along with middle school teachers. :lol:

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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 Apr 14, 2011 11:20 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Having worked in a county NH myself I can tell you meal time is a challenge for sure !

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Irene Selak


Thu Apr 14, 2011 2:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Yes, where Derek is there are so many who need to be fed that, literally, the entire staff takes part. I am usually there at least for one main meal and I assist him but when I'm not they wheel him into the dining room. Usually one staff member will sit with two residents--sometimes three--to help them and feed them if necessary. They do a terrific job in the kitchen getting meals prepared and prepared tastily. There are about 150 beds there.

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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.


Thu Apr 14, 2011 4:13 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Yes Pat,
I recall feeding 2 residents at a time ! It is a hard job for sure and I commend the people who do it !

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Irene Selak


Thu Apr 14, 2011 5:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Pat,
I also wanted to say I am sure they are glad you come for meal time, I am sure good help is never refused !

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Irene Selak


Thu Apr 14, 2011 5:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
The CGs loved it when I came in and fed my dad, which was 1-2 meals a day when I was in MD. I dare say they were relieved! They always took very good care of me, serving me lunch and whatever I wanted when I was feeding my dad and cleaning him up afterwards. It made their lives easier and it was a good bonding experience for my dad and me. I was glad I could at least do something for him that he could appreciate.

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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 Apr 14, 2011 5:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Lynn,
I am glad that you had the chance to do this for your Dad, it is a memory of bonding you will hold near and dear to your heart forever!

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Irene Selak


Thu Apr 14, 2011 6:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Yes, it made me cry when I wrote that. It was one of the few things in his last year that felt like I could accomplish something for him, and that he really did appreciate. Even towards the end when he'd say "I want a hamburger for lunch" so I'd get him one and he'd refuse to eat it and ask "why didn't you get me a grilled cheese?" Then I'd ask him if he wanted ice cream, and he'd eat one bite. I still felt like I was doing something useful for him that he sort of enjoyed. I miss my daddy......

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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 Apr 14, 2011 8:49 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Big hugs to you Lynn :( xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Apr 15, 2011 5:29 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Thanks Ger. As the weeks pass now, the horrors of his last 18 months are being replaced by more and more fond (& hilarious) memories of my dad. I really miss the dad I had for the first 58 years. Even my kids, who were really shaken by his death, are laughing at so many of the memories they have of their grandfather. He left us with a load of humor and so many memories. He couldn't have been a better grandfather or dad. Lynn

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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 Apr 15, 2011 9:28 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Lynn,
Those are the good memories that eventally come through and last us a lifetime, I am glad some of the bad stuff is becoming less and less in the fore front for you.

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Irene Selak


Fri Apr 15, 2011 1:46 pm
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Joined: Thu Jan 31, 2008 11:47 am
Posts: 88
Location: England
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Hi all, im feeling down with mixed emotions. Since my last post my FIL hasnt improved at all, the care home rang me this morning and told me that they were waiting for the doctor to visit. My FIL has been sleeping nearly all the time and only waking if someone tries to feed him. He has been drinking very little and hardly eating anything and not taking his medication. If he does eat it is now pureed foods. I have just had a phone call from the doctor, she told me that he was being admitted to hospital, if he were to stay in the care home he would just die. The doctor found him unresponsive, his heart rate was up, chest sounded like the chest infection was still there.

Oh what do I do now? I know my FIL would utterly hate being tube fed, shall I tell the hospital that we dont want them to do this. I feel that by him refusing his food, meds etc, he wants to just go. Ive known him for 24 years, he has no quality of life, I dont want them to prolong this. I have a picture of my FIL's mum in my living room and I speak to her and ask her to take him so then he can be back with her.

I feel my heart might break...........


Thu Apr 21, 2011 11:04 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Lee - it sure sounds like he is ready to go. I cannot imagine why anyone wants to prolong his suffering. If it were my LO I would NOT let them take him to the hospital. Is he not receiving hospice services? It sounds like calling in hospice would be a good idea, and getting them there asap will help you family members as well as your FIL. Lynn

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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 Apr 21, 2011 11:25 am
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Joined: Thu Jan 31, 2008 11:47 am
Posts: 88
Location: England
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
The doctor arranged for my FIL to be taken to hospital to be checked out and medically accessed. Im not sure if we could have asked for him not to be taken to hospital. This is what always happens he goes to hospital and then comes back when feeling a bit better. We have never had to deal with anything like this before, I would of preferred him stay at the care home where he is relatively happy and feels safe.


Thu Apr 21, 2011 11:52 am
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