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 Time to place him in an ALF? 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time to place him in an ALF?
Jeanne and Lynn are so right! This is your decision to make and you have made the only viable one for both of you. Your children may have various reasons for not wanting placement, including denial, concern about assets and the widespread belief that care facilities are horrible places to be avoided. Move forward boldly and ignore their inconsideration. I feel blessed that I did not have to face such opposition. God knows, it was a hard enough move to make! You'll be in my prayers.

_________________
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 Apr 10, 2012 9:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Time to place him in an ALF?
I've been thinking a lot this morning about Jeanne's comment:
"certainly Mom, Superwoman, Indestructable Mom, who has always held everything together, certainly she can't have a serious health problem. Maybe their behavior is self-protection rather than a lack of caring for you."
I think so many of us moms have had to play the role of super-mom - working full time, raising kids, keeping a household running, flexing our work schedules so we could get to kids' games, performances, dr. appointments, and hardly ever getting sick in the process! They truly DO think we should be able to "handle it", whatever "it" is. And, if they haven't been up close and personal with the LO for longer than a few minutes or an hour here and there, they really don't have a clue what either is experiencing. They have seen us "do it all" for so long, it's just not in their reality that we are (a) older so it is more stressful in many ways (b) what we are now dealing with as CGs is way harder than raising babies, kids & teenagers (although that might be argued by some! LOL) (c) many things in our lives have changed since they were home and probably being waited on by mom!
Anyway, I hope you do what you need to do for your LO as well as yourself, and the kids will just have to get with the program.
One of my kids, who lives 2,000 mi. from where my dad lived, hadn't seen him in about a year. The last time he'd seen my dad before he moved into the ALF, his grandfather was living independently in his own home, driving, fixing his meals, going out to dinner at restaurants, carrying on normal conversation. The next time he saw him, his grandfather had lost almost 100 lb., was lying in bed 24/7, barely able to converse, wearing adult diapers, barely eating, etc. It took that visit for him to truly understand what was going on, why my dad had to be in an ALF, and why my life was so stressful, trying to do CGing from 500 mi. away and driving there every few weeks.
My son left the ALF shocked & devastated at the deterioration in his best buddy, and had a new appreciation for his mom.
Sorry for rambling, this just really took me back to a few years ago! 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 Apr 10, 2012 10:21 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Time to place him in an ALF?
Sounds like you've found a wonderful place. I would disregard the opinions of your children. What you need is most important.


Tue Apr 10, 2012 10:34 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Time to place him in an ALF?
Thanks for the support everyone, I feel so blest. All of our children are involved in their dad's care. When I get away they come spend the night, I can truthfully say they know the reality of their dads condition when he is with them. Thing is, he can still turn on a feeble imitation of Showtime for them. With me he is cranky, resistant,and demanding. With them he is compliant and engaging. I just can't contemplate living the rest of my life with my kids mad at me, especially as one is convinced the placement would shorten their dad's life.
The idea of a conference with my doctor is intriguing, I'm going to talk to her.


Wed Apr 11, 2012 2:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Time to place him in an ALF?
It sounds like at least some members of your family have no idea what this disease is, how it progresses and the devastating effects it has on everyone. IMHO, they need some education and insight into the ravages of this disease, then perhaps they won't be worried about it shortening anyone's life. Sending a big hug, 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.


Wed Apr 11, 2012 7:20 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Time to place him in an ALF?
When my mother first came to live with me, no one seemed to believe the crazy stuff that she was doing except for my husband (who also lived with me - thank goodness). When she went to Assisted Living at first everyone said that she was in great shape and they didn't know why she had been in the psych hospital or any of the things that led up to the ALF, but after awhile, they became aware that she wasn't the average ALF patient (and she was asked to leave). She is now near my sister and my sister and my sister's care giver have finally seen mother the way she is when she isn't trying to "cover up" for herself. I think your kids might need to take care of their dad for a longer period of time than they have been so that he gets comfortable enough with them to let them see him when he isn't in performance mode.

I also want to agree with the idea that your kids do care, they just either don't see or don't want to believe that things are as bad as they are. Watching this happen to their father forces them to look at a lot of issues including their own aging and mortality, the beginning of a serious change in the nature of their family - these things are hard.

Good luck and please take care of yourself!

Liz


Wed Apr 11, 2012 11:36 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Time to place him in an ALF?
Yes, these things are hard. I agree that some family members just don't want to believe what is happening. My brother lived in denial of our mother's issues for quite a long time. But she couldn't do "showtime" forever and now even my brother can see the truth. It is very sad but everyone seems to handle this transition in their own way. My sister has been open all along to believing what I reported, even though she is just as far away as my brother. But she doesn't want to know the details of what is coming, doesn't want to come to this site and learn, says it is too painful. It is easier for her to digest it in smaller bites as the changes come over our mother. I think one has to let people find their own way through this.

Julianne


Wed Apr 11, 2012 12:51 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Time to place him in an ALF?
edited by author

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Last edited by BayouCajun on Thu Apr 12, 2012 12:21 am, edited 1 time in total.



Wed Apr 11, 2012 1:14 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Time to place him in an ALF?
Julieanne,

I apologize for the previous post….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Last edited by BayouCajun on Thu Apr 12, 2012 12:22 am, edited 1 time in total.



Wed Apr 11, 2012 5:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Time to place him in an ALF?
We have had a slight snag here and I would like everyone to just move on please!

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Irene Selak


Wed Apr 11, 2012 5:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Time to place him in an ALF?
Challenged, I agree that going the rest of your life with your children mad at you or judging you would be very, very sad. I hope you can both do what you need to do, and continue to have the support of your children. If you do have a a conference with your doctor, be sure to bring up any unspoken questions your children might be thinking. "Doctor, does placement in an LTC typically shorten the lives of people with dementia?" Get all the issues in the open.

Many LBDers can showtime for a brief period, perhaps overnight. So perhaps your children have not really seen the true reality. A few months after my husband was diagnosed I was hospitalized with no warning -- no time to prepare. Suddenly my two sons and three stepdaughters had to take over complete 24/7 care of Dad. They all work (as I do) and had lives (as I used to) and coming up with a schedule of who could do what when was an enormous logistics task. Even though I was in ICU I got calls from them about how to handle various issues. There was some question as to whether I'd be able to go back to caregiving, and they immediately began exploring nursing homes (crying as they did so). It was a nightmare for all concerned. But I'll tell you this: not one of those kids would ever question my judgment for their dad. They are just grateful I got well enough and that he improved enough that I could continue to care for him at home, and they all understand the day might come when I can't.

Believe me, I don't wish you a trip to the emergency room! But it might be a real eye-opener for your children to see a real week in the life of their dad.

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


Wed Apr 11, 2012 11:17 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Time to place him in an ALF?
Julianne, what you say about your sister reminds me of something from the book Loving Someone Who Has Dementia. A caregiver is accused by her husband's doctor of being in denial, of not listening to him. She says she does hear what he says, but she "puts in in her pocket" to deal with later, when she feels strong enough to take it out and deal with it (and perhaps has privacy to react to it). The author (Pauline Boss) says this short-term functional denial is a perfectly acceptable way to retain control. "When the news is shocking and things aren't going your way, you need time to take it in."

Of course it is not fair that you, as the local caregiving daughter, don't have the luxury your sister does of accepting this in bits. And it certainly isn't fair that your mother has no say in the rate she has to take things in. But we know life isn't fair, don't we? That you can find a way to make this work for everyone is to your credit, Julianne.

I think that if your sister were making your life as a caregiver miserable or neglecting her mother as a result of her need to be somewhat sheltered from reality, that would be a different matter. She doesn't want to do the research, but she believes what you find out. Sounds like it is working in your family.

People who have to make decisions, and people who sit in judgment of those decisions, by necessity have to get up to speed pretty rapidly, whether that would be their natural style or not. I think that Challenged's children need to be brought up to speed on the realities of Dad's disease and Mom's limitations, lest there be a rift in the family. How to achieve that is the practical problem.

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


Wed Apr 11, 2012 11:51 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: Time to place him in an ALF?
Jeanne, you hit it right on the head. Our children still are looking for "the light in dad's eyes", and rejoicing when it surfaces for two minutes. The next time one of them says that, I'm going to wonder aloud if, in that two minutes, he is aware that he is in diapers with drool on his shirt. Does he winder what happened to the strong body he had three years ago? A shortened life span is what I pray for every day for him, all the while his children still try to figure out how to increase his life span. And when I try to bring the subject up they're "not ready" to talk about it. They're fighting for themselves, not their dad, and they don't realize it.


Thu Apr 12, 2012 2:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Time to place him in an ALF?
Very, very good point - "fighting for themselves"! I prayed for a shortened life for my dad for 18 months, so I know exactly where you are coming from. I knew he was miserable and I knew he would have preferred quality over quantity of life. Doing anything to prolong the misery he was in would have been the meanest, most selfish thing anyone could have done. Afterall, there was good reason he and my mom had ADs and we discussed this as a family. Hope you have a peaceful day today. 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.


Thu Apr 12, 2012 8:08 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Time to place him in an ALF?
Challenged,
In my experience with the local support group, it's usually the spouse fighting to keep the neurodegenerated spouse alive, and the children more willing to see the situation for what it is. Interesting that this is not the case for your family. Is there anyone who could speak to your children? Close family friend, another relative, religious person, social worker, counselor? Perhaps a family meeting is needed.
Robin


Thu Apr 12, 2012 10:48 am
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