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 Incessant phone calls 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Incessant phone calls
Some thoughts on where lost glasses have been found.
1. If your LO is in a facility, sometimes other residents who are mobile wander in, take people's glasses or false teeth, then move them around to other people's rooms. Check with the staff and see if this might have happened to your LOs belongings.
2. Looking through the sheets and blankets has been productive for us a few times, when everyone said they'd done it, another person comes along and finds the object, like glasses, mixed up in the bed clothes.
3. If a trash can has been near where your LO sat or was lying down, that could be the depository and hopefully the trash with the glasses hasn't been emptied.
Can you call the optometrist and just have them make up a new pair of glasses with the same prescription so you don't have to take her twice? Since their vision can come and go, having the most current prescription may not be as important as it was when their vision was stable with or without glasses. Sometimes my dad couldn't tell a football game from a soap opera on tv when his eyes weren't working. Hours or a day later his vision was back to normal but he couldn't read anymore.
Good luck, 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 Jan 12, 2011 7:01 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Incessant phone calls
Good suggestions, Lynn. The staff swears they have looked everywhere, even turned the recliner over to make sure they didn't fall in. I really suspect she threw them in the waste basked when the lens fell out. I have confidence that they have done their best. And if any other resident went into my mother's room (which she never leaves), trust me, I would have heard about it. She'd have a fit.

I called the optometrist and they insist on seeing her because while they have replaced lenses, they have never done frames for her there (last ones were done before she moved here). They say they need to measure to do frames. I figure it will be just one trip--I will just pick them up when they are done and take them over to my mother and not take her back unless she has problems with the new ones. Her eyes were just tested this past summer (at her insistence, swore her glasses needed to be changed but as I figured it was LBD at work). So the prescription will be fine. I know her perception of her vision will come and go.

Thanks,

Julianne


Wed Jan 12, 2011 7:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Incessant phone calls
A friend of mine whose dad is in an ALF in NYC says her dad wanders from room to room and changes dentures and glasses. The ALF finally had to have everyone's names or initials engraved on the dentures and names put on the glasses so they could tell whose was whose. They just can't keep her dad out of the rooms of others. I'd be pretty upset if I had a LO there. 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 Jan 12, 2011 8:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Incessant phone calls
One time, in another facility, my husband lost--all at once--his glasses, his TV remote and his flashlight. I finally found them in his roommate's closet in a box with my husband's name on it. He had apparently 'hid' them up there for some reason that seemed logical at the time. I knew the roommate had not taken them, although I'm sure my husband would have blamed him rather than admit he had done it. :roll:

_________________
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.


Wed Jan 12, 2011 8:58 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Incessant phone calls
We have the missing glasses problem, too. We found out that my Mom hides things in her kleenex box. I've also put a piece of tape with her name on the glasses and the ALF recommended that I photograph them and add it to the "glasses file" they keep. Still, sometimes there is nothing that can be done. Our current problem is that my Mom throws her underpants in the wastepaper basket if she sees them and they keep getting tossed out. On the other hand, since her weight fluctuates so much maybe the panties don't fit anymore and she knows what she's doing.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Wed Jan 12, 2011 9:15 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Incessant phone calls
I have a feeling that my mother's glasses are history, but probably as soon as we buy a new pair, they will reappear! But I can take a photo of the new ones and then if they disappear, everyone will know what to look for.

Today, we went through a big drama because my mother apparently was mixing up her denture adhesive and her toothpaste, but none of that was her doing, either, of course. I am learning not to argue because she believes that she does not make mistakes! She got mad at me for trying to clarify which product was for what purpose, but the upside of that is she has not called me the rest of the day! I am grateful for some peace and quiet.

Julianne


Wed Jan 12, 2011 10:46 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Incessant phone calls
Peace and quiet sounds good. :lol:

When Coy was confusing objects I labeled things with pictures. The pump bottle of hand soap had a clip art of hands holding a bar of soap and in large type soap on it. The toothpaste had a clip art of a toothbrush on it, etc.

If he had made a mistake like your mother's I could honestly have laughed and said, "Oh honey! This reminds me of the time I brushed my teeth with Preparation H. It is easy to get distracted and be confused, isn't it? No major harm done, but let's put this tube in my office and you can come and ask me when you need it." (Yes, I did that. When I called the poison control center to ask about it I found out that a lot of people -- not all of them with dementia -- unintensionally brush their teeth with the weirdest stuff!)

About the only thing I fuss at Coy about is his earing aids. He has lost a pair, microwaved a pair, and lost the replacement pair. I joke about it. I scold. I get stern. I praise him when he puts them away correctly. I try every way I can think of to make an impression. Those things are EXPENSIVE and they really do impact his quality of life (which isn't true for everyone.)

Our daughter works at an ALF and tells of the resident who swallowed a hearing aid, thinking it was a cashew sitting on his tray.

I'm sorry about the lost glasses and the inconveniece involved -- but I'd trade you for a lost hearing aid. :roll:

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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 Jan 12, 2011 11:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Incessant phone calls
Jeanne - I had to laugh at the hearing aid mistaken for a cashew! I hope the poor person didn't choke on it, but it did seem humorous when I read it. BTW, I put either sunscreen or moisturizer on my toothbrush a few months ago by mistake. Luckily I realized it before it went in my mouth because it smelled perfumey instead of minty! LOL

_________________
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 Jan 13, 2011 3:19 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Incessant phone calls
Jeanne, those are good suggestions. Maybe I will try putting signs on her toothpaste and denture adhesive tubes. It is hard for me to know what really goes on because she is in an SNF and I am not around to see her ADLs. But she resists assistance from the nursing staff, so I don't know how much they supervise her. (She blows them off when they try.) As a matter of fact, I wonder how it is going to work as she becomes increasingly confused but refuses help or supervision. I did consider asking the nurses to keep the denture adhesive somewhere and then take it to her when she requests it. That way the worst thing she could do is use toothpaste to put in her denture! It's the part about brushing with denture adhesive that is the big mess.

Interestingly, there has been no mention of getting new glasses for the past couple of days. Apparently the backup pair are adequate, thank goodness. One less thing to do this week, anyway.

Thanks,

Julianne


Thu Jan 13, 2011 3:37 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Incessant phone calls
One of the seminar/workshops we attended at Mayo had separate sessions for caregivers and patients. Part of the caregiver session helped me have a somewhat different perspective. The facilitator asked us to list activities we liked and she wrote them down on the board. Then went through the list and asked us what our loved ones could do, and crossed off the things they couldn't. Couldn't drive. Couldn't take long walks. Couldn't tolerate cool swimming pools. Couldn't focus attention on television shows. Couldn't read. Etc. etc. It is a wonder to me that any of them ever get past huge anger and sadness and frustration. Coy was devastated that he had to give up driving, and that was a sore subject for probably 3 years, but for the most part he has adjusted to his situation.

And I can't imagine the fear and sadness and worry that would accompany recognizing my own decline. (As my sister says, if I ever go ga-ga, please let me just get there, and not be aware of the journey!) Would I accept help graciously from other people, or would I try to hang on as long as I could to the illusion that things haven't drastically changed? Would I believe people who told me I had dementia or would I try to prove them wrong? If I wasn't sure I recognized the people who claimed to love me, would I trust them? This is such a sad, sad, situation. I don't know how anybody that this happens to gets back to a pleasant disposition, but it does happen.

When Coy annouces his intention to do something it is no longer safe for him to do (or I find him in the garage rummaging aound for a roof rake), I say, "You've done that for many, many years, and you always did a good job. You've earned your retirement from that kind of chore and we have someone else who will do it now. But could you please empty the dishwasher for me?"

It would be awful to feel useless! It would be frightening to think you can't even take care of your own dentures without help. And it is very, very hard for us caregivers to deal with those practical matters and also figure out how to maintain the LO's dignity. Lewy is a hard roommate!

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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


Thu Jan 13, 2011 4:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Incessant phone calls
When Derek would complain about no longer being able to drive [and he still does, occasionally] I would say, "For all those many years you did most of the driving--and you were a great driver, too! Now you get to have a chauffeur!

_________________
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.


Thu Jan 13, 2011 4:59 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Incessant phone calls
Jeanne, you made some excellent observations. I can't imagine being in my mother's situation. She is still struggling against everything. Two or three months ago, before her most recent big decline, she told me that she didn't see the point of living if she couldn't do anything meaningful.
Who could blame her? And now she is just about there. I'm sure she would agree with your sister, but Lewy hasn't given her a choice. So sad.

Julianne


Thu Jan 13, 2011 5:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Incessant phone calls
My dad told me the same thing for the last 8 months of his life. It was so, so sad. 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 Jan 13, 2011 6:05 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Incessant phone calls
Quote:
She told me that she didn't see the point of living if she couldn't do anything meaningful

Quote:
My dad told me the same thing for the last 8 months of his life

In the early days, when Coy was very severely impaired, he would also have periods of clear lucidity. (These often came at 3 am. Sigh.) In one such lucid period he said, "I feel cheated! All my brothers and my father and even a sister got to die of heart attacks. It is not fair that I have to go through this!" Not fair indeed.

It is very sad. I suppose our own religious views and life outlooks will color decisions we make during the end stage. I know quite clearly what Coy's wishes are and what they were long before Lewy came to live with us. I think (who knows?) that will make it easier for me when the time for difficult decisions comes. But there will still be gray areas. Right now Coy has decent quality of life. I would certainly have him treated for pneumonia, for example. But in the end stage, it might not be a bad way to let him go. Other people have different attitudes and I certainly respect that.

I guess we've digressed a bit from how to deal with repeated phone calls. :P

_________________
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 Jan 13, 2011 6:51 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Incessant phone calls
from a patients view…what a thread! and the timing for where I am…

a lot of reality is setting in…not pretty…on this end either

there are things I want to say…I don't want to hurt anyone feelings…if and when I say them…you can choose…either I am saying them out of love or I am after all sick…

I remember my Grandmother at the nursing facility…she originally went in with osteoporosis…she was crumbling in her nineties…..sharp as a tack…almost made it to 97 years…she would fumble with the phone and manage to turn off the ringer….it was very frustrating….phones or other things should only do what they should do…now whose responsiblity would it be to make sure that things only do what they should do? whew…really hard to write these things…so many will probably take things the wrong way…

I have some fresh ideas on delusions…I will post in a delusion thread…I am beginning to believe that delusion is a progressive state that the brain is using to compensate away the inability to control the steady progression of attacks on self determination…similar to the body producing shock to deal with unbearable pain….delusion may be self preservation…

Jeanne…you asked me to write about the mayo caregiver seminar experience….I need to do that too…on another thread….I enjoyed (?) reading your account and your views

the point…how do you take away all of my independence (you will) and at what time, stage (your decision)…and deal with my frustration, fear, anger or blank stare (not going to get many thank yous) (and which of these reactions do you really want?)

I thank all of you for your sharing and caring…and your LO's do too…you are all they have

_________________
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


Sun Apr 10, 2011 12:34 pm
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