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 My Dad's rapid decline. 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Jill, I am so sorry for what you are going through with your father. You will certainly remain in my thoughts and prayers. And a big cyber-hug to you, too!

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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.


Mon Jun 28, 2010 6:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
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Jill - please take care of yourself through this emotionally-draining time. It is very difficult to see our parent(s) in such a state. I feel much the same way about seeing my dad - he looks and acts like a stranger. He has lost 95 lb. in a little over a year. He is gaunt, his hands are always like ice, lots of scary physical changes. I know he appreciates seeing me, so I go every day I am in MD. Some days it is so hard to force myself to see him, but I go for him and sometimes I just sit and cry in my car when I leave his ALF.
The transition from being child to being our parent's "parent" is a huge change. I dealt with that for quite a while last year and then I just had to get used to it. I had to take over for him because he couldn't do all he'd always done. It takes a while to make that switch in your mind and heart but you'll get there. Be strong for him, be strong for you and your other LOs. Lynn


Mon Jun 28, 2010 8:58 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
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Hi, Jill. I'm going to ask you to look at the other side of the fence. I know it's hard, at 35, to find blessings in your situation, but I'd like you to try.
Yes, most of us are dealing with "the long goodbye." And one of the worst things about it is that we know how it will end, but it a long torturous road to get there. Yet, this time is a blessing, too. We have time to get our LO's affairs in order. We have time to say the things we've always wanted to say but thought they would sound too dorky. It doesn't matter if our LO can understand or not, though they understand a lot more than we'd like to think they do. They do understand your tone, much as a young child or infant can. Much of what you want to say can be said through the tone of your voice or a touch.
My Mom is 88 and still at home with me. I'm hoping to keep her here until she doesn't know where she is. She lost her parents to dementia - her father to Alzheimers and her mother to some sort of traumatic dementia. My other grandfather also spent the last years of his life with dementia. And his wife, my other grandmother, died of cancer - also a long drawn out battle. But I didn;t recognize the value of the time that was given to us. I never said those dorky things.
My father died very quickly, of a ruptured aorta. He was 48. He didn't have time to have dementia. He was literally there one day working to winterize the house, and gone the next. While this is the way I hope it is when it is my time, I still, after 40 years, resent that I didn't have the time for that one last talk with him.
If it is your father's time, make the most of what is left. His eyes may be closed and he might have trouble with the words, but I believe he will understand. He's not gone, only occasionally hiding from this awful disease. I know this for a fact. A few months before my grandmother passed, a light in her eye told me she was there as she did something I hadn't seen since I was a child. She winked at her 2-year-old great-granddaughter. I thought I had lost her, but she'd been there all along - just masked by the dementia.
Don't give up. Look for the blessings of this time and you'll have your father with you even after he has passed.

By the way, learning all I can about LBD and other dementias is helping a lot. I strongly recommend "The 36 Hour Day" (I don't remember the author, as I've given this book to other family members) and "Caregivers: Drowning in a Sea of Cognitive Challenges" by Delaune Pollard.

My very best wishes to you, Jill, and to your family.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jun 28, 2010 11:24 pm
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Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
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Thank you for all of your kind words and support...my Dad lost his battle with Lewy Body Dementia last week. It was about two years exactly since his diagnosis, but had been showing symptoms of "something" for about 5 years. He died in his sleep and appeared to be pain-free, never needed morphine, etc...He just stopped eating and drinking and slept. His vitals were still good even the day before he died per hospice.

Good luck to everyone on this site. I pray for a miracle of some sort for all of you.

Jill


Mon Jul 05, 2010 5:14 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
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Jill,

I'm so sorry to hear the news of your father's death, but so good to know he went peacefully. Your post made me cry because I'm on my way to see my family again shortly and can hear the decline in my dad's voice.

Hugs and hopes for peacefulness.

Amanda


Mon Jul 05, 2010 5:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Jill, I'm so sorry to hear of your father's death. Losing a parent is always difficult, even when it is expected. It is indeed a blessing that he didn't endure much suffering nor many years of torment from this dreadful disease. God bless you and your family.

_________________
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.


Mon Jul 05, 2010 5:47 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Jill,
I'm so sorry for your loss. Your father has died much too young and as a result of a terrible disease. The pain must be intense. My wish for you is that in time, the good memories will overshadow the recent past.
Garnet


Mon Jul 05, 2010 6:39 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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Jill,
My condolences on your loss.
Robin


Mon Jul 05, 2010 9:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
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Jill - sending my condolences too. I'm glad he wasn't in pain and that he didn't have to endure this awful disease for many, many years like some LOs have. He was very young, which makes it even harder. Take care, Lynn


Mon Jul 05, 2010 10:56 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
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JIll
I feel so very sad for you and your family. You will be in my thoughts and prayers.

Take care.

Karen


Mon Jul 05, 2010 11:39 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Jill,

I am so sorry for your loss. My husband recently died similarly, without pain, or drugs. We sometimes forget that all our loving care must sometime come to an end, and that the loss will be painful. Please take care of yourself and your family, knowing that you did what you could to ease his passing.

Doris

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Bay Area, CA


Tue Jul 06, 2010 1:40 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Doris,
My deepest condolences to you also on the loss of your dear husband.
Robin


Tue Jul 06, 2010 12:47 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
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Jill,

I'm sorry for your loss. It's a blessing that he passed in his sleep without needing more meds for pain. May God bless you with His peace and strength and may He flood your mind with wonderful memories of your dad.


Wed Jul 07, 2010 12:15 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
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Jill,

I'm so sorry to hear of your father's death. I hope the fact that he passed peacefully is a comfort to you and your family. Take care of yourself and your family during this difficult time.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Fri Jul 09, 2010 2:56 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Jill, Sorry to read about your dad, I'm always sadden when a LO dies, but it's the only way they will be relieved of this horrible disease.
Take Care,
Gerry


Fri Jul 09, 2010 9:35 pm
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