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 Moved my parents to Assisted Living: worth the hassle? 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Moved my parents to Assisted Living: worth the hassle?
We moved my parents to the assisted living wing of their retirement community 3 weeks ago. You'd think moving to a similar-sized two-bedroom apartment on the same floor of same building would be straightforward, but it took 5 or 6 weeks of intensive packing and organizing beforehand, a day of absolute chaos, and then several more weeks of stressful adjustment before we could start to see daylight. The final verdict is not in, but it is starting to look like it might be worth the hassle and the added cost.

The planning and packing were bad enough (scavenging boxes, arguing over what might be given up, trips to Goodwill and Salvation Army drop-offs, navigating around the Sierra Nevada of boxes, designing and revising floor plans scaled to the inch, negotiations with the renovation coordinator...) But the actual day of the move was chaos, beginning at 7 am when I went to check on the new apartment and found it had no appliances, thermostats in the wrong places precluding putting furniture there, carpeting not finished, a foot shaved off the bedroom floor plan by placement of an hvac unit - frantic rundown of the coordinator, who blithely assured me that the movers - due at 9 am - could work around the appliance installers and the construction crew! Luckily I had arranged a parent-sitter for the day, and my husband helped to shuttle clothing and lamps on the "trolley" with a rack. And they brought a wet-vac right away to fix the Niagara Falls and Lake Erie that developed when someone tested the dishwasher that hadn't been hooked up right. By the end of the day, we did have a functional set-up (albeit with its own mountain range of boxes.)

Then the fun of adaptation began. My mom alternated between packing up her vital necessities in her walker basket before "They" came to move her to dementia care, and trying to herd all the rest of us outside because the building was on fire. They missed several meals because of confusion about times (they now get 3 meals a day, with various options of location.) My dad had fits because my mom would wake him up in the night worried about fires, or boxes, or whether i had been carjacked on the way home, or she'd take off faster than he could catch up, headed for the old apartment to see if something had been left there. He had to meet with the head nurse about their needs - 3 or 4 times.

But we finally seem to be settling down. My neurology buddies and I decided to try doubling the seroquel dosage from 12.5 mg 2x/day to 25 mg 2x/day, still a low dose but magically effective in improving sleep and making the delusions go away again. The CNA's turned out to be lovely people who helped my parents with their daily needs. The boxes gradually got unpacked (my niece came to visit and helped with the last few.) My mom has concluded this is where she lives, and my dad, who was about to send her off to the dementia care unit, says she is now doing better than she had for quite a while. She and I even had a great political discussion the other night - she made a passionate case for equal pay for equal work, and made her plans for voting in November crystal clear, in case I had any doubt about her wishes if her vision requires help with the absentee ballot.

So at least for the moment, the extra help and lighter burden and greater social contact at meals are helping to improve their lives, and we are hoping we can stall off the need for dementia care or skilled nursing that much longer. With parents who are 96 this year, it's all guesswork, and all (in some sense) for the short term. But we do our best.

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jun 08, 2012 5:05 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Moved my parents to Assisted Living: worth the hassle?
Oh, Laurel, it sounds like it's going to work out well! Good work getting it all organized and implemented!

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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.


Fri Jun 08, 2012 6:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Moved my parents to Assisted Living: worth the hassle?
Laurel,
You are such a fine writer that even disasters can sound so interesting! So glad to hear that things may've turned the corner and you're actually seeing *improvements* rather than further decline. Good work!
Robin


Fri Jun 08, 2012 6:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Moved my parents to Assisted Living: worth the hassle?
Laurel - Your story sounded like you were probably very frazzled through a lot of the chaos, but managed to keep a sense of humor and luckily it sounds like things are working out now. It reminded me of getting my dad's stuff ready to move from his house to the ALF. In the 2 weeks I had gone back to my home, despite the color-coded sticky notes that I had given my dad and very clear instructions on how to use them, he had put a hot pink label (which meant this absolutely needs to go to the ALF) on just about everything in his house. Then the day he was moving from rehab to the ALF there was his locking the car with the keys inside, his walker and his wheelchair inside, while I propped him up against a post so he wouldn't fall while I ran into the ALF to call AAA to come unlock his car. Oh, those moves can be SO interesting and challenging, can't they?
I hope things continue to improve for both your parents and you and they like their new place and are settled soon. It helps if you can laugh at some of this stuff! 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.


Fri Jun 08, 2012 9:52 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Moved my parents to Assisted Living: worth the hassle?
I'm so glad to hear from you. I've missed you, Laurel. But I can certainly understand you being a tad preoccupied lately! I hope it is absolutely worth the hassle, but that is always a gamble, isn't it?

Now you can say, "so far, so good" -- but I doubt you would have said that at 8:15 am on moving day.

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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


Sat Jun 09, 2012 12:49 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Moved my parents to Assisted Living: worth the hassle?
As everyone here has observed many times, LBD is an up-and-down process! Jeanne is right - starting about 7:30 AM on moving day and continuing until probably 7 pm two days later, I was not just frazzled, I was beside myself. Several times I was tempted to declare myself an orphan and walk out. "Parents? What parents? You must have me confused with someone else - my parents were eaten by crocodiles/ lost at sea in the Antarctic/ carried away to Oz in a tornado..." Lynn, of course, is right that a sense of humor is the saving grace in such situations. Though I might have been tempted to feed someone to the crocodiles, if a few of them had been nearby, when the dishwasher erupted in a torrent of water just as the movers arrived with two more carts piled high with boxes.

I don't know that my parents are taking full advantage of the CNA support yet, but they are clearly getting more help, consistently. The assisted living staff took care of their transport to and from their dental cleaning appointment, and will schedule their dermatologist visits and take care of transport. The CNAs found my mom's hearing aid (under the bed). They found the lost coffee mugs (in the dishwasher, apparently put there by another CNA.) And every day they help my mom pick out an outfit - I have all her clothes color-coordinated in the closet - and get a shower before breakfast, and put my dad's compression socks on, and make up their beds. Maybe they can help my mom start going again to water aerobics - she loves that, and the indoor pool is now just steps away from the elevator closest to their apartment.

I know my mother's improvement is likely very temporary. But it's still nice to come by after their dinner and find her watching Wheel of Fortune and guessing the phrases, and my dad working in his study on his stamp collection without fear that she'll head out to the parking lot to escape the fire.

Laurel
PS, thanks, Robin, for kind words on my writing! It's a nice change from writing for work...

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Jun 09, 2012 3:24 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Moved my parents to Assisted Living: worth the hassle?
Laurel, it sounds like they are really settling in. And you actually survived the move, too! Great job.
I'm with Robin. When are you coming out with your book? We a need a good one on laughter with LBD and you have the talent and the wit to write it. ;-) And be sure to include the moving day story. :lol:
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Jun 09, 2012 5:56 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Moved my parents to Assisted Living: worth the hassle?
Well, Pat, I do keep a sort of journal and good notes on what happens. And it has to reflect the humorous aspects because that helps me to cope and to maintain my patience (at least as much as I succeed in that regard). If I ever get time and motivation to compile any of this into a book, I know where to turn for advice! Your book was wonderful. Thanks!

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Jun 13, 2012 3:00 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Moved my parents to Assisted Living: worth the hassle?
Laurel- I have to agree with everyone, you can definitely tell a story!
It helps to have a sense of humor when dealing with this disease, I think. I know many times if I didn't find the humor in things I'd be crying. Good to hear that your parents are getting settled in. As ill as my mom was last fall (from Sep thru Dec), she has been doing remarkably well since the end of January. I have no idea why, but just enjoy the reprieve. She is on page four hundred and something of a thousand page book that she's reading,( she tells me what page she's on once or twice a day :lol: ) and I'm so thrilled that she's able to enjoy reading again.
Ellen

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Wed Jun 13, 2012 3:16 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Moved my parents to Assisted Living: worth the hassle?
That's wonderful, Ellen! I wish my mom could read again. She is good for getting through some of the newspaper and skimming some magazines, but no more 1,000 page books. Sad, because she has always been an avid reader (like her parents and her children). But her visual perception is just too poor.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Jun 13, 2012 3:21 pm
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