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 what to say and when and how?? 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post what to say and when and how??
my husband is 66 , was diagnosed at 60 with ad.. and this year with lb.. i have noticed symptoms for way over 10 years!! he is in denial, altho i do believe he sees somethings are not as easy or even possible, like before.. he has never been a talker, or a communicator.. very private, very silent and keeps things to himself.. he also has ptst!!

and then comes lewy..

in the beginning i tried to involved him with everything, docs, attorneys, ideas concerns.. etc.. he listened, but it was obvious he didnt want to talk about it and seemed fine in just letting me do what i wanted to do about this.. so i have! made doc appointments, fought for va benefits, ss benefits, did the trust and he just signed.. built a fence ...over1000 ft, drew it, figured and ordered all supplys and helped gkids put it in... had a gate built, to keep him safe, when he started to wander... he is a contractor and never once offered to step in.. not complaining, just mentioning thats why i think he realizes, he couldnt do it... it feels like there is a huge elephant in the room and we walk around it all day..

i read a post recently that talked about discussing and sharing ideas... while you can.. maybe its already too late?

recently i have put the request in with the va, for a day care . its its been mentioned at the docs.. ive talked about how the docs feel social stimulation would benefit him and he nods.. and talks about calling a friend, which doesnt happen.. we are getting close to implementing this day care and i'm stumped.. how do i go about it?? do i wait to the last minute?? do i just talk about the socialization and off we go.. i am mentioning that occasionally, the pt that is being recommended, for his leg.. and this place has it.. but the logistics are scary.. i want to do this right, if there is a right.. i want him to be comfortable.. and if there is a big NO.. how do i handle that??

i have to mention this day care is for both of us.. got a lot going on, with other family members, right now and i'm feeling spread a bit thin...

thank you for any thoughts you might have!!!

_________________
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..


Last edited by cdw on Thu Oct 13, 2011 8:21 pm, edited 2 times in total.



Thu Sep 29, 2011 9:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: what to say and when and how??
Oh Cindi, how hard.

I think you are probably right that he realizes more than he is willing to talk about.

You are presenting this as something good for him. Social stimulation, other adults to interact with besides you, a good place to get his PT, etc. And since he has gone along with whatever you've decided so far, perhaps he'll just go along with this. If you are matter-of-fact about it, perhaps he'll trust you to take care of it, just like you did the fence.

I don't know if you should play the do-it-for-me card if he resists. I did and it worked, but Coy is not totally in denial. I've told him that I simply need some time each week that I can count on him being in a safe comfortable place, cared for and fed, while I take care of my own appointents, do work things, etc. I've said that I am doing everything I can possibly think of to keep him at home, and this is one thing he could help me with.

Now when we go to a care conference and the first question is Why are you here? Coy answers that it is so Jeanne can have some time to do her things, or that it is respite for Jeanne. I wish he felt it is good for him, but I'll settle for him going for my sake. I have no idea if that would be a good approach for you.

I wish you much success. Day programs are sanity-savers.

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


Thu Sep 29, 2011 10:31 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: what to say and when and how??
Cindi,

First, take a breath and try to settle your own thoughts. You are not doing this just for you. You are doing it for him. Like taking a child to school. He will benefit from it. No need to feel any guilt. It's a good thing.

Talk to the director at the daycare about this. They are experienced in easing people into the program and will help you both with this transition. They may suggest starting with short visits. As if he is just going there for PT, but since you might not be there exactly when his PT is done, he might want to sit in on another program, snack or game. You could tell him it is for an exercise class. Then, as he gets used to it, he could stay a bit longer. Even though my mom had to be there all day, she'd get mad at me if I picked her up too early. She didn't want to miss a thing. It'll grow on him, too.

Rely on the daycare staff. They will know what they are doing and how to make this easier for both of you. It's what they do.

Kate

_________________
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]


Thu Sep 29, 2011 11:31 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: what to say and when and how??
thank you jeanne and kate..

yes there is a feeling of guilt involved... its hard to know what to do and when, on this journey... but i feel that i need a break to be good caregiver and not burn out...or get sick... but it does feel selfish, at times!! ..but my counselor is helping me see, its very important..
thank you for your feedback.. what would i do with out you all??!!!
((hugs))
cindi

_________________
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..


Fri Sep 30, 2011 2:53 pm
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