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 some advice please 
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: some advice please
Glad the visit turned out to be good. Hope the wedding celebration is full of joy.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Fri Jun 22, 2012 8:42 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: some advice please
I love chances to dress up, too! I don't get many of them these days. Only one niece and one nephew left to marry off and we're in no hurry.

I could be wrong, but my take on visits is that they do more good for the visitor than they do for the visitee. I think they are important, though, for those who will be left behind. Mom's sister visited her regularly, though I'm sure some of those visits were very difficult. And Mom had what I know both of them knew was their final visit with one of her brothers last fall. Pictures from that visit meant so much to her. But by the time we realized we were in Mom's last year, it was too late to get the brother who was closest in age to her in for a visit. At Mom's funeral, it was obvious that his own dementia would have made things terribly difficult. I came to the conclusion that "final" visits should only be for those people your LO is closest too - close family and even closer friends. And that the visitor needs to be prepared for the experience. And, even if the visit is upsetting, the upset won't last forever and the chance the visitor has to say goodbye makes a huge difference to him/her. Exception: for family and friends who are very ill themselves, not only do I think that these people don't really need to visit for your LO to know he/she is loved, but I also believe they will see each other soon enough on "the other side" and that that meeting will be ever so much better.

Just my 2-cents worth.

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]


Fri Jun 22, 2012 10:14 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
Kate, you are so right.
I feel Dad is holding on out of fear and also some unfinished business that we don't yet know of. The video 'Gone from My sight' by Barbara Karnes gave me some great insights into what I think is going on with Dad. He is definitely afraid to go, but he is also waiting to finish something, so I thought maybe part of this is that he needs to say goodbye to his nearest and dearest, and he was extremely close to this uncle. It was very difficult to watch, but better than I thought it would be. It was worse when my aunt (my mother's sister), visited, as I think he saw my mother in her (she looks a lot like her). He hasn't seen my mother in almost 12 months, but we told him she is in a bed upstairs from him in the nursing home, and he settled much better. My poor mother is finding it quite difficult knowing that they have seen Dad, and she cannot (has decided she could not cope with seeing him there, and also is physically not strong enough to go see him - it would take an ambulance and she is a 3 person lift). That old saying 'so near and yet so far' is a very appropriate saying in this circumstance. We feel it would not be good for either of them to meet up again, as heartbreaking as it is to know they are physically so close to each other. She says she would prefer to remember him as he was, and he has no sense of time and thinks mostly that is only a few weeks since he has seen her. I sometimes wonder, though, if maybe he is waiting to say goodbye to her.

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


Fri Jun 22, 2012 7:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: some advice please
wow Ger - that is an interesting and also heartbreaking thought. Is there any way he could get to see her via Skype or something? Maybe he IS waiting to say goodbye to your mom. 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 Jun 23, 2012 3:57 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
not going to happen Lynn. My mother is adamant that she does not want to visit him - she says she has bid him farewell a long time ago - it is just so hard to be torn between them - I think he really wants to see her, but she doesn't want to see him - what do you do?!!!!! My mother won't even go on the phone, not to mention skype. She has told me that she has said her goodbyes to Dad, so I have to go by her wishes also.

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


Sat Jun 23, 2012 11:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: some advice please
Ger, that's so sad! :cry:

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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.


Sun Jun 24, 2012 12:39 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
its heartbreaking Pat, as I just want to do what is right for both of them. Being caught in the middle is driving me crazy, but I can't choose one over the other.

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


Sun Jun 24, 2012 8:23 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: some advice please
You are between the proverbial rock and a hard place, aren't you? I just want to send you a big hug. There doesn't seem to be a good answer for the situation, so I wish you peace and the ability to hang in there doing your best like you always do. 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 Jun 24, 2012 3:27 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: some advice please
Oh, so painful, Ger. At some point, if you can, let this be between your mom and dad. This is not your responsibility. Try to let yourself off the hook in this.

I don't know if these ideas will be useful or not, but thought I'd pass them on...

If, when your mother's sister visited, your dad saw your mom in her, is it possible that your dad would believe that your aunt is your mom and say what he needs to say? That's kind of far fetched, and you don't want to tell him she's your mom. But if he reacts to her by believing in the identity switch, maybe you could make use of it.

Or, maybe you could help him write a note to your mom? You don't really have to give it to her if you think it would be worse for her. He may just need to express what he is feeling.

Worse case, if the moment is there, tell him that your mom knows he loves her and that she loves him, that he has done well with his life and that he has nothing to fear. (At least this type of thing worked for Mom.) You could tell him that your mom will join him soon - that things will be what they once were between them...

Maybe it is not so much that he hasn't had a chance to say these things to her. Maybe he is afraid that he never will. The assurance that he is loved on this side and the next and that he will have a chance to share with her on the other side may be enough. I don't know, of course, if we retain our own essence when we pass or become part of something larger. But I am very certain that knowing that the end here isn't the end and believing that you will continue to share with those you love goes along way toward finding the peace needed to pass.

Take all of this with a grain of salt, Ger. These are my ideas from my perspective. Only you will know if any of them will be useful (or possibly harmful) in your situation. But most of all, recognize that this is not your responsibility. If you can't fix it, you can't. You don't have to. This is between them.

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 25, 2012 12:55 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
Quote:

Worse case, if the moment is there, tell him that your mom knows he loves her and that she loves him, that he has done well with his life and that he has nothing to fear. (At least this type of thing worked for Mom.) You could tell him that your mom will join him soon - that things will be what they once were between them...
Quote:

Kate, thank you for your suggestions.
Yes, I did this with him, and he cried and cried. I told him how much my Mom praised him for looking after him for so many years, and that she could not have coped without him and that she missed him and loved him very much. He said 'We misses each other you know'. We both cried like the rain. It is difficult, but I have distanced myself somewhat and just do what I can do to make them both as comfortable as is possible in their situation.

Thank you all so much for your kind words of comfort and understanding. I honestly don't know what I would do without you all.

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


Tue Jun 26, 2012 11:24 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: some advice please
This is beyond difficult, no words are enough. I wonder if your mom would make a video of herself, maybe just speaking loving words and doing something ordinary? Would it comfort your dad to be able to see it?
I can certainly feel with her. I am strong and healthy (aside from a little brush with breast cancer 3 years ago), and my hb and I thought we had many years left to be active and travel together. Watching him gradually fall to this dreadful condition is torment. I'm so sorry you're in the middle of all this. Your folks are lucky to have you!


Thu Jun 28, 2012 11:24 pm
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