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 Another big decline 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Another big decline
Today my dad couldn't remember that he has a close friend named Lorraine, and he had no idea that he has 2 grandsons. This is a totally new thing, and very, very sad for me. He hardly talked when my sister visited. He usually is really mad at her and quite verbal. Throughout his degenerative brain issues the last year, he has never forgotten people that he has known a long time or even a relatively short time. 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 Jul 25, 2010 8:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another big decline
I'm sorry to hear about this. It may be a temporary thing. I think your only choice is to adapt, and to realize that it's a problem for you (and perhaps other family members) but not a problem for your dad or the caregivers at the facility.


Sun Jul 25, 2010 9:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
Yes, it could be that he was having a particularly bad day with his cognition and his speech. However, when new symptoms have appeared he usually doesn't regain whatever he just lost, and he loses several things at once. At least that has been the pattern since last July. It's going to be really hard on my kids when they call him if he has no idea who they are. I don't know whether to tell them this might happen or just let them find out on their own. 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.


Mon Jul 26, 2010 8:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another big decline
There are quite a few children's books along the lines of "grandpa has Alzheimer's" or "grandpa can't remember." You might look to one of those for guidance. Probably the less upset you are about it the less upset they will be.


Mon Jul 26, 2010 11:08 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
I'm not sure I mentioned this before, Lynn, but Derek's older son phone on Father's Day evening and spoke with him for a while. The next morning, Derek said, "Paul called last night". I replied, "Yes! I know, I answered the phone." Derek: "Who exactly is Paul, anyway?" "He's your son." "Oh.....I guess that makes sense."

With the constant Capgras, I'm accustomed to his not knowing who I am [but perceiving me as an impostor] but it was a shock to have him not know his own son.

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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 Jul 26, 2010 11:23 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
My kids are adults but they are very sensitive when it comes to their grandfather. I think the 26 yr. old has just been sort of in denial since he hadn't seen my dad for a year because of distance. When he came back east in June and saw him he took it very hard - it was a real shock since he'd been living independently and driving the last time he saw him prior to this summer. I know it will be devastating for them so I guess I should break it to them gently before they call him and he has no idea who they are.
Thanks Robin and Pat. 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.


Mon Jul 26, 2010 12:22 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Another big decline
Lynn, You never know, your dad may remember the boys. When Frank was first dx he didn't know his family, children and grandchildren, so I put pictures of them with their names under and have had that hanging in the kitchen ever since. He recognizes everyone, but me, but can't always come up with their name immediately. This is "our" life and I've learned to accept what is, but when I give myself time to think of Frank as our girl's dad, I get very emotional. He was/is a great father, always there to help with any project, be a 4th for a game or just pull pranks. Now they come out to the car to help me get him in and then wipe his drool. (now the tears are coming) They keep reminding me that it's their turn to HELP him. Our girls, their husbands and our grandchildren, 16 & 20 are great with him, still tease him and try to get a smile. Nana, I don't know how you do it without support.
Stay well,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jul 26, 2010 6:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
I will be back in MD next week and will show him pictures of his family and see how he responds. It is really hard to believe he'd forget his grandchildren.

Different topic - have any of your LOs been diagnosed with possible ALS too?
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.


Mon Jul 26, 2010 9:03 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
Hi, Lynn. I'm really sorry about your Dad's decline. I have similar experiences with Mom. Sometimes I get a confused "who in the blazes are you" look. This past weekend, I tried to tell her that her sister was coming to see her on Sunday. It took several attempts for what I was saying to register. I don't think it registered who her sister is. But today, she's fine. I even had a short conversation with her. I have to get directly in front of her for her to hear, or notice, me. (sometimes I don't think it's the hearing that is the problem. It's that tunneled attention span. With Mom, it goes in and out, depending on how she feels. If she's tired or sick, she doesn't do too well with understanding things said to her or who people are. So when it's a bad day, I try to shelter her and keep people away.
OK. Your boys are having a tough time of this and you're worried about how they would handle the whole story. I have a sister who characterized her sons as being very sensitive, too. As they were growing us, and even now when they are both in their 30s, one married and the other eagerly anticipating the birth of his first child (another story, but with their lifestyle, they may not marry) anyway, as they grew up we were told by their mother not to talk to them about family crisis because it may upset them.
I think that, maybe, their are some parts of their children that Moms don't see as clearly as others do. Trust that you have prepared them for crisis. They'll have them all of their lives. Honor their adulthood by letting them hear the whole story and be better able to support you. You are lucky enough to have these men in your life. Help them to understand and they may become your rock you can count on. Of course they'll be upset. Aren't you? Anyone who isn't upset about this disease can't possibly be paying attention. Let them go through the earlier stages of letting go and, dollars to donuts, they are going to be a great help to you. I was in high school when my grandfather went through Alzheimer's. At first, his long-ago memories were wonderful things that he shared with us, his grandchildren. Later, when it had gone much further, it was a pleasure just to sit with him quietly. Just sit and rock. And I know he appreciated the attention. I was under 30 when my grandmother and my other grandfather went through their own brand of dementia. I'm pretty sure that we were sheltered from some of Grandpa's Alzheimer's. But by the time Grandma and my other Grandpa were showing their dementia, I think we were prepared enough to get through it ourselves and help our Mom (and aunt and uncles) do what they needed to do. (Though my cousin was in his hobo stage and told Grandma that he would come home and take her out of the nursing home and take care of her (this, though she had no legs - diabetes).
Lynn, I'm sharing the experiences of my youth to illustrate that young people can come through with tremendous strength - even though they need to grieve first. Or because they grieve first. Give your sons an opportunity to help you. I honestly believe they will become men you can really lean on after they've absorbed the situation.
And Gerry's idea of the pictures is great. I thought of doing a "family wall," myself. I just haven't gotten around to it.
Best wishes for you and 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]


Tue Jul 27, 2010 1:37 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another big decline
Lynn,
Other than you, I've never seen anyone here mention that ALS was a diagnosis that an MD considered at any point. The disorders are so vastly different it's really hard to even understand how an MD could say "ALS or LBD."
Robin


Tue Jul 27, 2010 1:50 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
Kate - thanks for your stories and encouragement. I did call my oldest son last night and talked with him. He took it better than I thought he would. He said, "well, if he doesn't know me, it won't be much different than the conversations we've been having the past few months. It's not like we really have deep conversations anymore." My 21 year old will be home tonight and I'm going to talk with him too. I'm going to see if he can take a few days off work next week, drive to MD with me to spend some time with his grandfather and then he can fly home while I stay for a while. Since my kids and my dad are sports nuts, the boys don't mind sitting for hours watching whatever sports are on ESPN with him. Thanks again for your advice. 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.


Tue Jul 27, 2010 9:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
Robin - the last appt. I took him to, the neuro. said he didn't think my dad had LBD because of his Babinski reflex (his toes went up and splayed instead of being curled under.) I have absolutely no knowledge of this sort of thing, so I just asked him what he DID think was going on with my dad. That's when he said "possible ALS, possible CBD, possible fronto temporal dementia, possible vascual dementia, ventricular assymetry, and spastic paraparesis possibly caused by spinal arthritis or a tumor pressing on his spine. He has at least 2 or 3 degenerative brain disorders, but without more testing we won't know what he has."
Since my dad refuses any more trips to the hospital for anything, that's where we are. I'm going to do some reading about ALS since I only know one person who's had it and her progression was not at all like my dad's. I'm just a curious, need-to-know person and find this sort of thing fascinating as well as heartbreaking. I hadn't seen anyone else mention this but thought it was worth asking about. 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.


Tue Jul 27, 2010 10:03 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another big decline
I don't think the MD very carefully considered the list he was giving you. Sounds more like a list from exasperation.

Of course, regardless of what sort of additional testing were done at a hospital, there's only one way to confirm the pathology in the brain -- post-mortem brain tissue analysis.


Tue Jul 27, 2010 10:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Another big decline
Love that phrase - list from exasperation! I can tell people when they ask me what's wrong with my dad that he has "a non diagnosis of neurology exasperation"! At least it gave me a little laugh this morning! 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.


Tue Jul 27, 2010 11:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
Lynn, perhaps he was just rattling off a litany of disorders that could cause a positive Babinski reflex? Just a thought.

_________________
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.


Tue Jul 27, 2010 3:37 pm
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