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 What happened to me? 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What happened to me?
kmp wrote:
Hi. I'm not sure this will fit in with the thread of the posts, but I'm going by the title. Anyway, I finally got a CNA to come in twice a week. Primarily, to give me a break and to get Tom used to care from someone other than me. Also, to get established in our healthcare group insurance system. Bottom line--getting out is almost worse than just staying home :cry: When I make the turn into our subdivision this feeling of dread almost overwhelms me. Tom will be pacing the room waiting for me. He will not have taken his nap or been to the bathroom, so, the stress level will be very high. I really like his CNA, he's very quiet and reassuring, but so far that hasn't helped. Some days, I stay home while he's here just to avoid the stress of leaving. I know it sounds silly. I never had problems with getting sitters for our kids when they were little. But the repercussions of their anxiety didn't last hours either. I'm hoping his anxiety and mine will eventually lessen. I'm sure it will, when he no longer recognizes me as his wife--how sad. Any thoughts about the time being? Kathy

Kathy, we went through the same thing when we got a CNA to come two mornings a week. At first, when I arranged an interview with the director, Derek would not even allow it so we abandoned the plan for months. Finally, I realized I HAD to do this and went ahead. Of course, he was very unpleasant about it at first but once he realized I was going to do it, regardless, he settled down. You need this to survive!

_________________
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 Aug 01, 2011 10:24 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What happened to me?
i'm just getting to this place and thank you all for your suggestions..

i am doing counseling and she keeps telling me its going to be rough in the beginning.. and i need to stand firm, for me and for him... i cant go forever , especially if i dont get a few breaks.. i wont last..

he is with his family now, for a week and im seeing such a difference from last year when he called every second for me to come get him.. this time he is going with the flow alot better and those come get me times, are very few and short lived.. he is actually close to enjoying himself..

that helped me realize, he needs other folks around, even if he fights and kicks in the beginning... its not healthy for either of us, to be together 24/7... so when he gets back its the first priority, to set the stage, to get a couple hours a week, for us both... i think im realizing its more about my fear of what might happen, than what will really happen, for long..

good luck kathy.. hang tough... hopefully the cg will have some suggestions to get thru this rough time and you'll not feel all that emotion on coming home...
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..


Mon Aug 01, 2011 11:22 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: What happened to me?
Thanks Cindi and Mockturtle. When folks like you, who can really relate to these cg problems, tell me we can work through it, it gives me a boost. Otherwise, it's just more pressure from family and friends who have no clue about the 24hr picture (and don't really want to know more) and tell me "you should just get out more." R-I-G-H-T! :lol: I know I've got to stick with it--for both our sakes--and this week my goal is to do something other than grocery shop, pick-up meds, etc. then rush home. I've always been the person in the family who tried to make things right for everyone, but with Lewy, I guess I'll have to take a step back. I am sooo grateful for this website! Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Mon Aug 01, 2011 12:45 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: What happened to me?
I don't know if this will be helpful but I have found that things go more easily when I state plans as a fact and not as a proposal, because then there is no suggestion that the LO has room to disapprove. Not to demean the LO, but I approach it more as I would with a small child, simply announcing what we are going to do. It certainly cut down on the debates and dissents.

Julianne


Mon Aug 01, 2011 1:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What happened to me?
Julianne, your comparison to small children was apt. I thought about using that reference, too, but was afraid someone would think I was demeaning my husband. But it is SO much like leaving a toddler with a baby sitter. My younger would scream her head off but as soon as we were out the door, she was quiet. :lol: I'm so glad we didn't think, 'Oh, dear. We can't go out and leave her with a baby sitter--it makes her so unhappy!'

_________________
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 Aug 01, 2011 2:58 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What happened to me?
wow been there done that.. the first few times i tried this having someone being here.. (family..) it felt like it wasnt even worth going out after going thru all the fussing prior to leaving.. sure popped my bubble.. but the last few times i didnt leave any wiggle room and just made a flat statement and off i went.. i even have had daughter show up 5 minutes after i left to pick up some and then she talked him into an outing and dinner and that worked out well.. just mentioned she'd be by to pick soemthing up and showed him where it was to give to her... and i didnt get this babysitting talk and how it was unnecessary.. we both felt better.. i just need to be creative and hang tough..

yes i understand the child like thing.. so similar.. so sad.. but true..
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..


Mon Aug 01, 2011 3:21 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
Oh my goodness Kathy, I can soooo relate. As I said at the beginning of this thread I feel at times as though I have no life anymore. Dad is attached to me at the hip. I finally got to go out to lunch with my husband this weekend. Yay! We used to do that all the time. I soooo miss it and him. We dropped my Dad off at my Aunt's house for a short visit. We were so thankful. I'm just starting to get some home health help. PT started last week. Problem is Dad isn't very cooperative. He thinks she's doesn't really do anything, she just collects a pay check. In reference to an aid, "I don't need anyone like that to help me or babysit me. I'll go be with the Lord first." Dad is generally a very friendly man. But, lately his mood are really swinging. Getting very argumentative and angers quickly. Very hard to deal with. I guess another part of Lewy. Hang in there ... they need us ... we love them ... but we need to remember to love ourselves also!!! I keep forgetting ...


Mon Aug 01, 2011 5:55 pm
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