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 FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD 
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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
I may have missed it, but did you state whether or not he had signed an Advance Directive prior to his illness? You are really between a rock and a hard place and I feel for you and your family. Probably, sending him to the hospital was a bad decision but unless he specifically requested that no life-prolonging measures be taken if he had a terminal illness there's not much you can do unless you have medical power of attorney for him [I'm sure the laws in England are somewhat different from ours--I'm just suggesting what we do here]. Do you have Hospice care 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 21, 2011 12:19 pm
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Joined: Thu Jan 31, 2008 11:47 am
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Location: England
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Hospice care is for terminally ill patients, i.e. cancer patients. I suggested this to the care home and they said he isnt terminally ill. No nothing was signed regarding his care at later stage of his illness, but the gp said if he goes back to the care home we can have a meeting and discuss what would be in the best interests of my FIL. Also we dont have power of attorney so really we are going to have to leave decision making to the professional medical people.


Thu Apr 21, 2011 1:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
What a shame that your Hospice services do not apply to dementia which, in the end stages, is obviously terminal. Leaving the decisions to medical care providers puts them between a rock and a hard place and you can assume they will use a 'CYA' approach.

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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 21, 2011 2:09 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
Lee - sorry I didn't read that you were in England, and all these things do vary from one place to another, even in the US they are not the same everywhere. If the family members of your LO have strong feelings about how he should be treated or not treated medically, I'd certainly encourage you all to speak up, if he never appointed a medical power of attorney. Surely, he'd look out for YOUR best interests if it were the other way around. Even if you have no legal papers stating what he wanted I'd think you have every right to say what you think should happen. And, I'd hope the medical folks would listen.
Perhaps you can find some postings here on the forum or elsewhere that you and other family members can relate to, print them out, and present that to the doctors.
In the poem I posted yesterday - the phrase "keeping someone undead" - I thought that was a very poignant way of describing our LOs in the final stages. All the best to you in helping your FIL, 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.


Thu Apr 21, 2011 2:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Lee,

How is it that you/your husband don't have power of attorney? Does another family member have this?

Does any family live near enough to visit your FIL in the hospital, and talk to the medical staff there?

Robin


Thu Apr 21, 2011 2:56 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
Lee,
I literally speak with dozens of families and I think many of you would be surprised that there is nothing legal in place, many people don't believe they will ever need it !

I for one have everything in place for myself in the event that I need to have someone else make decisions with my care.

When my husband first became sick neither one of us had anything in place either, I hussled to get it done !

Sad lesson we have to often learn through illnesses such as this !

At least if your FIL goes back to care facility they are willing to include you in what's your FIL best interest .

I wish you well !

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Irene Selak


Thu Apr 21, 2011 5:06 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Irene, you are right. So many people don't think of advance planning. I'd say over 75% of the clients who come to me for estate planning are thinking only of wills, and I have to explain to them the importance of POAs and advance directives. Once they understand, they are always on board. Lots of people only learn when a LO has a serious illness or accident. It probably just seems obvious to this group because we have been through it.

Julianne


Thu Apr 21, 2011 5:27 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Julianne,
At least the people that come to you are doing some sort of planning, the people I talk with aren't even thinking along those lines and are fairly advanced with their LO's illness. It's sad!

Also the adult children I talk to that a parent has remarried and they are totally excluded from health matters.

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Irene Selak


Thu Apr 21, 2011 6:30 pm
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Location: SF Bay Area (Northern CA)
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Or that the ex-wife is the healthcare proxy! That's a fun one.


Thu Apr 21, 2011 6:43 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Thats right, I had 2 sisters yesterday that thought their Dad had everything in place, well the step Mother made sure things were in place alright, just to her advantage !

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Irene Selak


Thu Apr 21, 2011 7:18 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
irene selak wrote:
Thats right, I had 2 sisters yesterday that thought their Dad had everything in place, well the step Mother made sure things were in place alright, just to her advantage !

Lee, I hope you don't mind that we are digressing a little here, about POA issues, etc.

I seem to be playing a contrarian role sometimes lately. Here I go again.

As the step mother (that is, person the father has freely chosen to cast his lot with, till death do us part) in our own scenario, I don't always immediately side with the children in these kinds of conflicts. Our local support group includes a wonderful caregiver in a second marriage. Each had gone through painful caregiving experiences in the death of their first spouse, and were willing to risk it again by remarrying relatively late in their lives. We saw this lovely, caring person struggle with the changes in her husband's abilities and personality, finally face the need to have him placed, and her continued devotion to his care right up to his death. If that wasn't enough for her to deal with, his grown daughters made her life miserable. They felt that only they had the right to make care decisions. They treated her as an interloper instead of as their father's chosen helpmate. It was pitiful. I've seen other examples from the spouse's viewpoint. Out-of-state daughter who is in contact on holidays and birthdays makes first visit in three years, sees how poorly parent is doing and immediately tries to take charge, totally disregarding the step parent's role. How very sad.

Coy and I have been married 37 years. Neither his daughters nor my sons have been anything but supportive of my role as his caregiver. Among the five of them I am sure that there is not unanomous agreement about how to handle caregiving or end-of-life issues. But (so far) they respect their father's right to make his decisions, and my ability and intention to honor those decisions. For this I am very grateful.

Every now and then I try to do my bit to put the wicked-stepmother myth to rest. :roll:

But, back on subject, Lee I wish you had the advantage of Hospice support in your situation. I sincerely hope that the GP will take your concerns and your views of what is best for FIL very seriously. I don't imagine that the medical profession welcomes the responsibility of making these decisions alone.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Apr 21, 2011 10:32 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
Jeanne,
You are so right, and I certainly didn't want it to sound like all step mothers were evil as I know for a fact that they aren't, my own daughter is a step mom and a wonderful one at that and then there are the evil step children in some cases but again not all of them.
When I mentioned the 2 sisters it was just one case and there was fault on their part for not checking sooner before the Dad passed away.

So please don't take it personally as it was not intended that way ! And yes we need to get back to Lee's orginal post

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Irene Selak


Fri Apr 22, 2011 9:36 am
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Lee,
Are you and the family given any time frame as to when your FIL might go back to the care facility yet?

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Irene Selak


Fri Apr 22, 2011 9:38 am
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Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
Hi, Ive been to the hospital, he has been admitted to a ward. He is still unresponsive, has been put on a drip and is on antibiotics again for a chest infection that hasnt cleared up yet. He is also being treated as NIL by mouth. I only stayed briefly as he is just laying down and sleeping, and didnt know I was there. I dont know when he will be discharged or if he will be discharged back to his original care home, if he stays like this for any time then I think he will need to go into a nursing home instead of a dementia care home. I have requested that he is not tube fed as I know he would not agree to this if he was able to voice it himself.
Thanks for all of your replies guys, I will keep you updated. xx


Fri Apr 22, 2011 11:51 am
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Joined: Thu Jan 31, 2008 11:47 am
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Location: England
Post Re: FIL NOW IN RESIDENTIAL CARE. PARKINSON DISEASE/LBD
My husband and I went to the hospital again today. Was able to speak to a nurse who is caring for him today. She told us that he has Pneumonia and also two bed sores. He is so thin, I moved the sheet to cover his legs and omg they are so thin. Even though we asked them not to they have put in a feeding tube but havent started feeding yet as they need to do a chest x ray to make sure the feeding tube is in the right position. Today my FIL seemed to recognise us, he couldnt talk though but he tried to whisper but I couldnt really understand much of what he said. I swabbed his lips, his mouth is dry and his tongue had a yellow discharge on it, he seemed to like me doing that. He has oxygen and is on antibiotics for the infection. He is nil by mouth, but if the feeding tube is in the correct position, Im sure they will try and feed him. I asked him if he was hungry and his mouth looked like it said yes, though im not too sure if he understood my question.


Sat Apr 23, 2011 5:37 pm
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