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 The Long Goodbye 
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Re: The Long Goodbye
long goodbye...last goodbye..goodbye. There is no easy way to say goodbye. No matter how you look at it, it still hurts those of us left behind. Have peace in your mind that you took such loving care of your mother..you are a wonderful daughter. I know if she could, your mother would tell you how much she appreciates your care. Your lives have gone full circle: mom taking care of baby daughter and now daughter taking loving care of mom.
I pray your mother will be out of pain for the duration and will exit this world to the next in peace. My heart is with you...with all of you still on the path.

Blessings
Dianne

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Dianne C.


Fri Jul 30, 2010 12:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: The Long Goodbye
This long goodbye is just so painful. I asked that one of my dad's caregivers help him call me today, and one of them called me back and said his voice is so weak I probably wouldn't be able to hear him. I know when that happens he gets very frustrated that I don't know what he's saying, so I told her not to bother because the last thing I want to do is get him all agitated. She said the last few days no one can hear what he's saying. He's now down to 127 lb, from 235. He's barely eaten in about 3 weeks but the last 2 days he's eating more again. Yet, the hospice nurse doesn't think he's within weeks of dying. His agitation level has increased again, the CNP refuses to change any meds, and I was unable to get his primary changed after yet another attempt. The new head nurse tells me he yells for help on and off most days, and he just wants to see a human face most of the time, but he refuses to be in the dementia unit where there are people all sitting around doing activities with each other. This is such a hopeless, helpless situation. 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.


Sat Oct 09, 2010 4:21 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: The Long Goodbye
Lynn,
I can only imagine how very hard to is on you being a distance away, when are you going for a visit again ?

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Irene Selak


Sat Oct 09, 2010 7:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: The Long Goodbye
Will be with my dad a week from today. I hate that we can't even talk on the phone anymore. Last year this time he was calling me constantly on his cell phone (one night in Oct. last year he called me, my sister and my husband a total of 27 times in about 2 1/2 hours). Now he can't even HOLD a phone or talk, let alone dial the phone or speak loudly enough for us to hear him. I just hate this.

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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.


Sat Oct 09, 2010 7:39 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: The Long Goodbye
Lynn.
I know you do and sadly it is all part of his illness,I am glad you are going soon, seeing him will help you get through all of this ! I often say we can't
look to far ahead but I think you also can't look to far back either!

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Irene Selak


Sat Oct 09, 2010 7:46 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: The Long Goodbye
Lynn, I'm so sorry. Please remember that you are doing the very best that you can for him.

Annie

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


Sat Oct 09, 2010 8:07 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: The Long Goodbye
I am so sorry. You and he have gone through so much together. You have been a stellar daughter and I wish you were my own. Bless you, and may you all have a peaceful night. Nan


Sat Oct 09, 2010 10:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: The Long Goodbye
You all touch me so deeply. Thank you for all your kind words and support. This is such an amazing community of wonderful, kind people. Some day I hope we can all get together! I wish everyone a good night's sleep tonight. 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.


Sat Oct 09, 2010 10:30 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: The Long Goodbye
Lynn, I can't even imagine what it would be like to be so far from my mother and still try to care for her. I know it's heartbreaking. You are an amazing daughter and I'm sure your dad knows it.

Would he just listen on a phone call and not talk? You could just talk with him - actually to him. If he can't hold a phone, maybe the staff could work an inexpensive speaker phone so that he can easily hear you.

Mom's voice hasn't faded, just the words she looks for. It's worse, of course, in the evening, which is when my sisters call. So I just ask them to do all of the talking (letting Mom try but knowing that most of the talk needs to come from them). They can get their news to her and she has the joy of hearing her daughters tell her that she is loved and admired.

Maybe your dad could just listen?

Thinking of you often.

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]


Sat Oct 09, 2010 11:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: The Long Goodbye
Thanks Kate for the ideas - I have tried having him just listen but he always wants to ask questions and really tries to have a 2-way conversation. His CGs dial the phone and hold it for him when we try to have conversations, but he gets exhausted and frustrated. It's not like you can tell him to just listen and he'll do that.
Sometimes I get him during a good day, or good hour, but those are getting fewer and fewer. During his good times, his thinking is somewhat clear, his speech is somewhat clear, and his voice is louder than a whisper. I just have to be patient I guess. I'll see him next weekend, but it would be nice if I can catch him on a good day before then.
I appreciate all your support, everyone. 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.


Sun Oct 10, 2010 7:47 am
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