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 dad recently diagnosed 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: dad recently diagnosed
Of course you are sad! That is perfectly appropriate.

It doesn't sound like either your mother or your sister can make the most objective decisions for your father. Do you know what his own wishes have been? My husband has said repeatedly, and in writing, that he does not want a feeding tube and cannot imagine any circumstances that would justify it. All five of our children know it, and everyone knows it would be going against his wishes if they tried to insist on a feeding tube. If you know from things your father has said or ideally from his healthcare directive, that makes the decision easier.

If Dad is refusing to eat, rather than just having difficulty doing it, that seems to me a kind of statement in and of itself.

Can you talk to a hospice worker?

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


Fri Dec 09, 2011 11:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: dad recently diagnosed
Those are great questions, Jeanne!

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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.


Fri Dec 09, 2011 11:33 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: dad recently diagnosed
Terry, this is about feeding tube. You can go to "search" and find much discussion about the feeding tube and our loved ones with end of life issues. Please forgive me if I am adding extra burden on you with all the sadness you have and not knowing which way to turn or how you can help but please consider what others think about the subject of feeding tube and dementia. Make your decision about what to do and be done with that thought.. Put it behind you. Each thought, one at a time. Decide and check it off.

You cannot be all things to all people so try to set priorities. You have so many worries. Go slow. We all care.

Dorthea

viewtopic.php?f=4&t=2747&p=24622&hilit=feeding+tubes#p24622


Sat Dec 10, 2011 2:25 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: dad recently diagnosed
Terry - the situation between your mom and dad seems untenable. Is there some way you can get POA and take over for your poor dad? If he is crying every time your mom comes in the room and is scare of her and she is emotionally abusive to him, that sounds like elder abuse. Can you get someone from their local agency on aging to come in and assess the situation?
It is so difficult when you are a member of the sandwich generation, especially with little kids who need you. And their events and development don't stop because you are CGing a parent. It is so hard. Was the kids' event this past Thurs.? I hope you got to it and now can get away to take care of your dad's care for a few days.
Hospice is a great suggestion if he has stopped eating, and if his body is shutting down and he does not need food, that is a clear sign. If he truly is not getting food or water he doesn't have more than a few weeks UNLESS someone insists on a feeding tube.
You need lots of support, so I hope you have friends and/or relatives to help you through this. Hospice is also very helpful to the family of the patient. Come back here as often as you need to. That's what we are all here for! 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.


Sat Dec 10, 2011 9:33 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: dad recently diagnosed
Your mother could be suffering from caregiver burnout. In any case, it sounds like some counseling for the whole family is necessary here. Unfortunately, circumstances like this seem to open up all kinds of old family tensions. Hopefully, the medical professionals at the hospital will be able to accurately assess the situation and help your family find the best course of action.

_________________
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.


Sat Dec 10, 2011 9:49 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: dad recently diagnosed
Welcome to the forums Terry. Sorry that you need to be here along with the rest of us. My mom had a very scary downturn in Sep because she was in renal failure. At the time I really thought that she was going to die but once her kidneys were functioning correctly again she came back to her usual baseline with a slight decline. For the past three weeks she has been in another decline because she has an infection in her leg that doesn't want to heal. The hardest thing for me to deal with is this fluctuating cognition. She seems fine on day and then totally confused the next. It really is like a very stressful roller coaster, and I can't make any plans at all beyond the day that we're in. We had to cancel our Thanksgiving plans and I have no idea what to do about Christmas yet, but that's another issue.
I don't know your family or your situation but be careful about believing everything that your father says. They believe what they are saying but that doesn't make it true. Once when my mom was in the hospital she told everyone that I just "dropped her off in the parking lot" which was absolutely untrue! She also called 911 once and told them we were holding here her against her will and she wanted to go home, but she was home. I'm just saying that our LO's perception of reality is different than ours, so be sure to take that into consideration when he tells you things.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sat Dec 10, 2011 1:44 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: dad recently diagnosed
Terrykoz ~ It is such a terribly sad, frustrating, frightening, heart-breaking disease that anyone involved including the patient should be crying non-stop IMO. Unfortunately I recognize what your mom is feeling. Whatever love we once had, Lewy has killed it. I feel terrible, but it has been going on for so many years, it really ruined our relationship & shattered dreams not to mention any future hopes. I truly believe this disease has been operating on my husband for many years in subtle ways. This will sound weird, but to me it is like an "infectious" disease as it affects everyone around it - no one should have to endure its torture. My heart goes out to you and your mom & dad. I am praying very hard for God's mercy for all of us.
Roxanne [crushed by lewy]

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Sat Dec 10, 2011 5:24 pm
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Joined: Thu Dec 08, 2011 5:24 pm
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Post Re: dad recently diagnosed
Thank you everyone for your words of support and knowledge. I bought a plane ticket for Sat to Wed. I hope I am not to late. He did eat a little bit yesterday. I am dreading seeing him in this condition and the real possibility of him not knowing who I am. Any advice on getting through that and how do I handle his paranoia about everyone out to kill him? Do I just go along with what he says if he says anything at all? What is the appropriate way to interact with him?


Sat Dec 10, 2011 6:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: dad recently diagnosed
I'd just reassure him that you are doing everything possible to help him. He doesn't need to know the details of that and may not have the attention span to listen to details anyway. If you haven't seen him in a while, he may look very different from your last visit (very frail, very thin, unable to form coherent thoughts and words, etc.) Just be prepared that he may be a mere shadow of his former self.
Without knowing him and exactly what's going on, it's impossible to tell you how to react, other than be supportive to your dad, let him know you love him and will go to bat for whatever he needs. (if that means YOU have to be the one to say "no feeding tube" if that is still an issue, or whatever the issue is, as long as you are doing it in his best interest you just need to say you are doing everything to help him because you ARE)
If you've always had a good relationship with him, he will trust you and believe what you say. It's dealing with your mom and sister that I think may be more of a challenge. I'd probably find a good counselor who deals with families in this sort of situation, let them know your concerns and help you practice responses and behaviors that would reduce stress and help the situation become more positive, at least for you and your dad. You cannot control what your mom and sister are thinking, so just do the best you can for him and for you and maybe they'll come along! Good luck, 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.


Sat Dec 10, 2011 7:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: dad recently diagnosed
Quote:
If you've always had a good relationship with him, he will trust you and believe what you say.
There are exceptions to this. Capgras delusion, for instance, where the afflicted person believes their spouse/caregiver is an identical impostor. We went through that a couple of years ago. Not fun. :cry: One thing I had handy was the phone number of my SIL whom I referred to as 'Deputy Smith' and phoned when my husband became agitated and thought I was an impostor and there were other people here who were out to get him. He would talk to 'Deputy Smith' [he didn't recognize the voice!] about what was going on. My SIL was very cooperative and very skilled at dealing with such situations and my husband would usually be comforted.

_________________
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.


Sat Dec 10, 2011 7:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: dad recently diagnosed
Very good point, Pat. My dad rarely exhibited capgras, and never did it with me, but that is something to watch out for in case that happens. Since it was so infrequent and only happened towards the very end, I tend to forget that. It was mainly with my sister and one of my kids, never with me. 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.


Sat Dec 10, 2011 9:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: dad recently diagnosed
It's almost always a spouse.

_________________
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.


Sat Dec 10, 2011 10:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: dad recently diagnosed
Wow - I wonder why that is? For my dad, my youngest son was the main person. He referred to him as "my nephew J____" and when asked how he was related, my dad would say "well you know, he's just my nephew". He thought that J lived down the hall at the ALF sometimes for a week at a time but wouldn't come visit him in his room and he'd get really mad about that. Picture a 21 year old college kid living in an ALF! My son just took it in stride and didn't try to argue with him or correct him, he'd just go along with the nephew designation. 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.


Sat Dec 10, 2011 11:21 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: dad recently diagnosed
Terry,
I think the best resource on dealing with delusions is the Alzheimer's Association. In particular, this information sheet is helpful on this topic:
http://www.alz.org/national/documents/t ... epsych.pdf
Robin


Sat Dec 10, 2011 11:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: dad recently diagnosed
Lynn, Derek sometimes would think his son was his grandson, etc. but that's not Capgras. From 2008-2010 off and on he would think I was an impostor posing as his wife. That's what Capgras is. Weird.

_________________
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.


Sun Dec 11, 2011 12:01 am
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