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 Incompatible Goals? 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Incompatible Goals?
I've heard for, oh I suppose more than 8 years, that caregivers should "get help," "find help," "ask for help," "involve the family," and "get help." I've done some of that in various ways. I'm making a more concerted effort to do it now.

I signed Coy up for weekly massage therapy, which he loves. I took him for six weeks. I don't mind this at all, but it does take up a big chunk of my work day, which I then try to make up for at night, after Coy goes to bed. Many an assignment has been sent in electronically at 2 am. :P I'm having some health issues and I don't think that I can keep that up forever. I put out an email request to all family. A daughter and two granddaughters volunteered, and I worked out a schedule through January.

But I've also heard that following a consistent routine is important. In another post Craig explains how difficult any deviation in a routine can be. This can be as little as usually offering the left sleeve first in helping with putting on a jacket, and one time offering the right sleeve.

So here I am inserting different people into this massage routine, and in some cases different times of day, to fit their schedules. Sigh. Sometimes we just can't do it all, eh?

I wrote our routine down, from where we hang our coats, all the way up to helping Coy dress after the massage, and sent it to the 3 helpers.

The first turn came today. The daughter who volunteered lives in a distant suburb and we don't see a lot of her. Coy enjoyed seeing her, and I know he'll enjoy the two granddaughters, too. I hope that offsets the disruption to his routine.

As a person who has always valued flexibility, I'm finding the consistent routine thing a bit of a challenge!

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


Tue Dec 13, 2011 9:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Incompatible Goals?
I'm a 'routine-loving' type, myself and my husband has always been fanatical about routine but I don't think you need to carry it to those extremes. Good grief, Derek hasn't even been able to tell night from day for years and certainly doesn't know what time it is!

_________________
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 Dec 13, 2011 9:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Incompatible Goals?
Just do the best you can do, knowing that perfection probably isn't attainable anyway, and remember that you cannot afford to compromise your own health by the constant giving and demands of caregiving. You are only human and need to take care of you 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.


Tue Dec 13, 2011 9:51 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Incompatible Goals?
jeanne...big hugs.. i hear you trying so hard... and hope it all pulls together for you...

ive been trying so hard to do the same but im finding i need to start bending, for my sanity...if nothing else... and like folks said, a few minutes here are there is hopefully not going to be that devastating for coy.... im making some small changes, a few at a time, little by little, that when complete will hopefully give me a few hours a week to do a few fun things... that i had completely given up this last two years...

i need that social time.. online and phone calls just arent cutting it... so hopefully it will work for me and it will work for you..

please take care of you... you are important too..

cindi

please let us know how assigning times, works out.. my counselor says not to wait till they offer..ASK!! so i just started doing that and asked if i could have a 3hours a month, from each of my family.. there are only three adults, ds, dd and dil.. so that isnt alot but its a start.. fingers crossed...for both of us...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Dec 13, 2011 10:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Incompatible Goals?
And don't forget to ask close friends. They were a Godsend with my dad! Also, the local hospice, before he was approved for hospice medical services, sent a volunteer who visited and talked with him a couple of times a week, which kept him occupied and gave him something new to look forward to. 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 Dec 13, 2011 10:35 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Incompatible Goals?
Ah, Jeanne. He'll get used to the new normal and might even enjoy it. Also, it is good for him to get used to multiple caregivers. Hopefully no time soon, but there is very likely to come a time when you will have no choice but to bring in additional help or even move him to a memory care facility. Getting him used to having help from more than one person, especially for those very personal tasks, will pay off in so many ways. I hope that's way in the future. But I can't tell you how many times I've wished I'd made a change when Mom was more cognizant and could understand and participate in the change. It's smart to make any changes you can, setting yourself and Coy up for what may be needed, as early as you can and it is reasonable to do.

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 Dec 16, 2011 2:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Incompatible Goals?
Good point, Kate. Thanks.

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


Fri Dec 16, 2011 8:17 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Incompatible Goals?
Jeanne…

remember everything I say is suspect…

while I was relaying how even a small change in routine can be disruptive…

I know that is reality….over and over….

I was not trying to say one has to provide absolute uninterrupted routine….
(it would be nice) but, impossible…..
come to think about it….it would not be nice….no variety? that stinks….
…I think the goal should be to get the best overall experience for everyone…on both sides

rather, my explanation of what I experience and what I think….is to show why I get frustrated and have trouble when things change….

so, when people around me are having to change my routine…they will have a better understanding of why it becomes a problem for me now….when it didn't a few years ago…..

……

let me give another example that was talked about at mayo…that I could relate to….
patient sits in the same recliner chair every day….
he sets his coffee cup and retrieves it from the side table that he has placed in a comfortable spot for a few weeks….
his loved one, one day moves the table 'ONLY' a few inches for a more 'pleasing' look in the room….
the next day….the patient spills his coffee and is very frustrated…then becomes super frustrated that the room has been 'MADE' over…
….seems like a mountain over a molehill?
not when put in context….
the procedural memory was set….and then a change….
the patient, won't even know why they are frustrated….but, they will be…because their brain isn't doing what they want it to do and they can't figure out why….
that little thing is preventable….if understood….
….I RELATED TO THAT EXAMPLE….I LIVED IT…I NOW UNDERSTAND WHY

this end table thingee….seems to me something that should be preserved if understood by all….
keeping everyone healthy by rotating caregivers and the changes built in with that….seems to be something that has to be okay….but understood that it will cause problems…


everything about this stinking disease is a problem….

_________________
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


Fri Dec 16, 2011 8:53 pm
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