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 A little bedtime confusion 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post A little bedtime confusion
Normally after Coy takes his night pills he is out like a light within 8 minutes, and doesn't stir for a couple of hours. Tonight I heard him back in the family room in about 15 minutes.
"What do you need, Dear?"

"To hook up the phone alarm."

(the medic alert system? hmm) "What do you need it to do?"

"Wake me up in the morning."

(ah, the alarm clock) "I can help you set your alarm clock."

(rummaging through his day program bag, which contains tissues, reading materials, a change of underwear, sunglasses, etc.)

"What are you looking for?"

"A three-way socket."

"Well, lets go into the bedroom and see what we can find in there."
...
"See, this cord from the lamp, and cord from the alarm and that cord behind the night stand all need to be connected."

"OK. You get into bed and watch while I check it out."
(gets in bed)
"I see that your alarm is set for just the right time. I'll turn it on so it will wake you in the morning." (Actually, that is not true. The alarm is at a pitch he cannot hear. The alarm wakes me and I wake him and tell him to turn it off. Works, just not as directly as it sounds. :lol: ) "And the sliding switch on the lamp cord is working just fine. See? I can dim the light."

"Is the clock tick-tick-tick?"

"Yes. It is running just fine. I see that it shows the same time as the clock on my side of the bed. It doesn't make a ticking sound, though. It is digital."

"I know."

"Are you all set to sleep now?"

"Yes. Thanks for your help. Good night."

:lol: Definitely not a crisis situation, but kind of strange that this kind of confusion visits him out of the blue. Normally he can set the clock just fine on his own. But tonight it needed a 3-way-socket that he expected to find in his day program bag. At least he was very accepting of my help.

Life with Lewy is never dull.

_________________
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 Jul 26, 2011 12:51 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: A little bedtime confusion
It might have been interesting to produce a 3-way socket and see how he connects it to the alarm clock. Could it be one of those for people with hearing loss that turns on a 3-way light? :P

Thank you for that wonderful story. I'm glad Coy can still be so much fun.

G'night!

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]


Tue Jul 26, 2011 1:01 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: A little bedtime confusion
Hi Jeanne,
I'm sorry to hear of this unexpected change- do you think it possible it might still be related to the day his meds were mixed up? For me it takes a long while for my body to re-equilibrate from the smallest changes in my meds - even down to the time of day that I take them.....

I really hope everything is back to what is was very soon......Did you tell Dr. Boeve about this?

Thinking of you.....

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Jul 27, 2011 12:05 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A little bedtime confusion
Tonight shortly after I tucked him in, Coy appeared in my office doorway. He asked if I had figured out where .... where the shoes were. He paused in the middle like he was trying to remember what he was looking for. I really had no clue what he might mean. I asked which shoes. He looked at me like he was hoping I'd know.

Well, I said, I see that you put your bowling shoes and your ball by the back door. That is good. You won't forget them tomorrow. And I helped you take your new shoes off in the bedroom, so that is where they are. Is that OK?

He seemed glad to have an answer, and I lead him back to bed. He struggled to get in, which doesn't surprise me, since I'm sure the seroquel was kicking in. We were lucky he could walk back to bed.

If night confusion continues, I'll bring it up to Dr. Boeve, but I'll wait and see a little longer. He had a perfectly normal day. We saw the speech therapist in the morning, came home and he ate a decent lunch, watched baseball on tv, went and picked up his replacement hearing aid, came home and watched the news, and went out to supper with me. No obvious confusion during the day.

Ah, one thing that is different is that he fell yesterday and has a bruise on his bottom. Maybe the low-level pain has something to do with it.

Thanks for your concern. I'm used to ups and downs with Lewy and we may just be in a little valley right now.

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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 Jul 27, 2011 1:14 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: A little bedtime confusion
Dear Jeanne,

I do hope it's just a little one of the ups and downs of Lewy....You sound so kind and reassuring when you talk with him....I'm sure it means the world to him!! I know it would to me - the dignity that you give him and the comfort are so compassionate! You both inspire me!! I wish you both all the best.....

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Jul 27, 2011 12:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A little bedtime confusion
Tonya, for a couple of years, before budget cuts, we had a visiting nurse once a week, who took Coy's vitals, asked some questions, made suggestions and filled his weekly med boxes. She once said to me that she really enjoyed seeing how respectful I was of Coy and hearing us interact. I thought that strange. Why would I stop treating him with respect just because he is sick? Didn't she see this at every house she visited? But hearing other people talk about their parents, I realize that not every marriage is based on mutual respect, and if it wasn't there before the illness it is pretty unlikely to develop with Lewy in the mix.

I hope your own marriage is sound, Tonya, and that it will continue to be a source of comfort and strength for both of you throughout the journey. Being as aware and motivated as you are, you can do much to help your care partner now and in preparation for the time when you may be more dependent on him.

I want to say also that as much as I wouldn't wish this role on anyone, being a caregiver to someone you love and who loves you is extremely rewarding. It adds a new dimension to love. I'm not sure that I can articulate this, but there is a bond that developes that is deeper and richer than what was there before. I don't know how it feels from Coy's side, but I feel a peace in our relationship that transcends all the day-to-day frustrations.

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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 Jul 27, 2011 6:52 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: A little bedtime confusion
that is beautiful to hear Jeanne, xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Jul 27, 2011 7:07 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: A little bedtime confusion
Thank you Jeanne.....

I can feel it already deepening between us - I really need to be more respectful my my husband....I have a very bad habit of nagging and correcting.....I wish I didn't because it will be harder to break that habit now - but maybe it will dissolve in the new way our relationship is changing...already I have immense respect for him, and the way he has stepped up to take over so many things and the kindness, devotion and unconditional love he is showing me.......I pray I will always be kind and loving to him....no it certainly isn't that way in every home.....but thank you so much for sharing that.....it's so beautiful and hopeful..........

Best always,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Jul 27, 2011 9:16 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A little bedtime confusion
Well, Coy's been in bed more than 2 hours and he hasn't reappeared with odd questions. I'll take that as a good sign.

Today seemed pretty ordinary for him. As he left this morning I said, "With that bruise on your hip and your slight limp please don't be disappointed if you only score 60. Try to have fun." He came home with the best scores he has had in a couple of months -- he was so pleased. Go figure. I offered to kick him in the seat every week, but he didn't think good scores would be worth that. :lol:

We multi-tasked tonight, with me coaching him through his speech therapy homework while he soaked in the whirlpool bath. I've been wondering where I'm going to find the extra time to do these voice exercises with him. I guess this is one solution.

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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 Jul 28, 2011 2:09 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: A little bedtime confusion
Jeanne,
Glad to hear this news! Thanks for sharing it!!
Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Jul 28, 2011 5:27 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: A little bedtime confusion
Jeanne,
Glad things are back to Coy's normal , I hope it stays that way !

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Irene Selak


Thu Jul 28, 2011 9:08 pm
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