Are we having FUN yet?
It's a rough world out here for folks...especially those who aren't dealing with a full deck! That includes both the 'rents lately. Wintertime is hard on the circadian rhythm, which I am certain negatively impacts those with dementia. Mom's sleep cycle is way off, which means Dad is even further off. Never having the most patience, when Dad doesn't get his 10-12 hours, his levels of patience go down significantly. Mom, of course, has no idea what she is doing at night to keep him awake.
She pokes him...with her finger, people! "We're late for church...We have to go down...it's time to get up...when is it time to get up..." From about 1 a.m. till 6 a.m., if Dad is to be believed. Dad's memory these days is a bit off, too, although he is keeping a journal these days. It gives him an outlet - something concrete to do. To give Dad the opportunity to sleep a bit, I have started to take Mom with me more often - on a regular basis, as well as on that contingency basis. Monday seemed to be a bit of a necessity for both of them. Dad actually brought her here, after complaining loudly about her to me on the phone. So I told him I would pick her up at 9 a.m. (just like she was going to the Baldwin Center for CARES), take her to breakfast, and keep her with me till her doctor's appointment at 1:30 that day.
We had a great time at the diner...she ate 3 whole pieces of soggy french toast, drank a full glass of water (skipped the coffee!). I took her with me to Trader Joe's. TJ's is small enough to be less confusing than a big grocery store, and usually people are forgiving of her obsession with children there. Other than some corralling, and a knowing catching of the eyes with a mom of a little one who Mom waved at continually, it went quite well. Mom loves being in the car, so we took the scenic route through Milford, and back home to our house.
She helped with grocery schlepping and unpacking, then on to my office upstairs. I'm never sure if I'll be able to get any work done with her here, so I will take what I can get. "Roseanne" reruns kept her laughing for about an hour till lunch time, and I did some gallery work (YES!).
While she isn't a soup fan, that's what I had so that's what we ate, well, what I ate and she picked at. Some nice finish baking rolls from TJ's at least got her to dip into the broth of Progresso Italian Wedding Soup, and I cajoled her into eating the mini meatballs, and some of the ditalini. She made the faces of a 3 year old eating something horrid for the first time, but she ate enough for me to be satisfied I covered lunch. No bogus crackers for lunch...winning!
Off we went to the neurologist appointment...10 years ago this year, Mom got the initial dementia diagnosis, and Dad thought she should get an updated MRI (yeah, no reality check there...). Also, he really wants to dose her up so she'll sleep, and he continues to take her behavior personally. She has had some significant losses this past year, so I understand his concern, but not his insistence on a magical pill that will cure what ails him (yes, I said him...he wants a pill for her that will allow him to do what he wants to do). Turns out that the initial diagnosis did say this was primarily a vascular dementia. Could have knocked me over! Never saw this particular report...don't know where he dug it up from...been arguing with gerontology guy for 3 or 4 years about this! Doesn't matter at this point, however it would have helped with pushing for ultrasound for blockages of arteries when she stroked in 2012. Also gives me hope that perhaps the big bad A isn't in my own future, or that of our kids.
For those of you who are regulars here, remember, Dad can't go to an appointment with Mom without mentioning his own troubles within the first 5 minutes. He did not disappoint here...he went on about his own broken (chipped) bone in his shoulder for quite some time (as the reason why he didn't know what happened to Mom after the admission to the FL hospital post stroke).
So, neurologist told Dad point blank that there is no mystery here to solve...the brain function (brain loss) continues its path, and the best thing we can do is to roll with it. He offered "placement", which Dad never heard, as an option. That would entail putting Mom in a facility, which Dad won't do...I mentioned to Doc that the "facility" would then get Mom's Social Security and tiny pension, which would impact Dad significantly - why do the doctors NEVER think of these things?
He also suggested a new drug - a Namenda derivative that also works with behavioral/anxiety challenges. Doc also said Mom was not on a high enough dose of Namenda at all (Dad had her dose cut in half 3 years ago - said she was too shaky - however that turned out to be her BP meds!).
Doc did the standard neuro exam - push against "my hands", look at "me" while he moved his fingers out of her direct vision. Mom has NO peripheral vision at all - up/down/right/left. Imagine having blinders on all the time - cut the bottom of a shoebox out, and walk around with that in front of your eyes...uh huh, that's what she sees. Has to be an issue with understanding, processing, crowds, personal space. I have to actually do this TO Dad as he says she is combative when she doesn't follow a conversation. I would be too, if I had no peripheral vision in addition to all of the other challenges she deals with.
As we were walking out of the office, Dad actually turns to me and says, "So, Mom can go with you and you can bring her home around 5 or so, and give her a shower?"
"No, I can't do that today" was all I said, seething inside. I know he needed a break, and he got one. It doesn't help to say I actually have a few jobs, that I work, that I have other family members in need (more needy right now, I wanted to say, than he is!!!). None of these words are heard. "I'll see you at 5:30", and I left to go on to the next, very important part of the day, visiting another family member in hospital. I did take about 30 minutes for me...while walking my dog, I also walked me!
What made this all worth doing on Monday was looking forward to giving Mom a shower that night. I get to speak loudly to her (hearing...), and tell her to get naked...I get her to the bathroom, in the shower, in the seat, and fix the water to her liking. They have one of those hand held showers, so I get to squirt her down, much like she tortured us when we were kids. "WASH YOUR HAIR...CLOSE YOUR EYES SO I CAN HOSE YOU DOWN." Yup! That part is fun for me, and she laughs but gives me evil looks, too. "GET THE SOAP...WASH YOUR FACE...ARMS..." I soap up her back, and it feels good to do something nice for her as I feel her relax under my hands. "NOW DO YOUR BOOBS"...this is my weekly haranguing of her...this week, when I said to do her boobs, though, she went back to her arms with the soap..."NO YOUR BOOBS". She looked at me funny and said, "I am" so I had to touch her boobs and say "THESE"..."Oh, why didn't you say so...", she laughed, and we finished up the shower. I bundled her up in 2 big towels, got her dried off and into her nice fluffy nightgowny thing and into the living room...said goodnight and left, chuckling all the way home.
She pokes him...with her finger, people! "We're late for church...We have to go down...it's time to get up...when is it time to get up..." From about 1 a.m. till 6 a.m., if Dad is to be believed. Dad's memory these days is a bit off, too, although he is keeping a journal these days. It gives him an outlet - something concrete to do. To give Dad the opportunity to sleep a bit, I have started to take Mom with me more often - on a regular basis, as well as on that contingency basis. Monday seemed to be a bit of a necessity for both of them. Dad actually brought her here, after complaining loudly about her to me on the phone. So I told him I would pick her up at 9 a.m. (just like she was going to the Baldwin Center for CARES), take her to breakfast, and keep her with me till her doctor's appointment at 1:30 that day.
We had a great time at the diner...she ate 3 whole pieces of soggy french toast, drank a full glass of water (skipped the coffee!). I took her with me to Trader Joe's. TJ's is small enough to be less confusing than a big grocery store, and usually people are forgiving of her obsession with children there. Other than some corralling, and a knowing catching of the eyes with a mom of a little one who Mom waved at continually, it went quite well. Mom loves being in the car, so we took the scenic route through Milford, and back home to our house.
She helped with grocery schlepping and unpacking, then on to my office upstairs. I'm never sure if I'll be able to get any work done with her here, so I will take what I can get. "Roseanne" reruns kept her laughing for about an hour till lunch time, and I did some gallery work (YES!).
While she isn't a soup fan, that's what I had so that's what we ate, well, what I ate and she picked at. Some nice finish baking rolls from TJ's at least got her to dip into the broth of Progresso Italian Wedding Soup, and I cajoled her into eating the mini meatballs, and some of the ditalini. She made the faces of a 3 year old eating something horrid for the first time, but she ate enough for me to be satisfied I covered lunch. No bogus crackers for lunch...winning!
Off we went to the neurologist appointment...10 years ago this year, Mom got the initial dementia diagnosis, and Dad thought she should get an updated MRI (yeah, no reality check there...). Also, he really wants to dose her up so she'll sleep, and he continues to take her behavior personally. She has had some significant losses this past year, so I understand his concern, but not his insistence on a magical pill that will cure what ails him (yes, I said him...he wants a pill for her that will allow him to do what he wants to do). Turns out that the initial diagnosis did say this was primarily a vascular dementia. Could have knocked me over! Never saw this particular report...don't know where he dug it up from...been arguing with gerontology guy for 3 or 4 years about this! Doesn't matter at this point, however it would have helped with pushing for ultrasound for blockages of arteries when she stroked in 2012. Also gives me hope that perhaps the big bad A isn't in my own future, or that of our kids.
For those of you who are regulars here, remember, Dad can't go to an appointment with Mom without mentioning his own troubles within the first 5 minutes. He did not disappoint here...he went on about his own broken (chipped) bone in his shoulder for quite some time (as the reason why he didn't know what happened to Mom after the admission to the FL hospital post stroke).
So, neurologist told Dad point blank that there is no mystery here to solve...the brain function (brain loss) continues its path, and the best thing we can do is to roll with it. He offered "placement", which Dad never heard, as an option. That would entail putting Mom in a facility, which Dad won't do...I mentioned to Doc that the "facility" would then get Mom's Social Security and tiny pension, which would impact Dad significantly - why do the doctors NEVER think of these things?
He also suggested a new drug - a Namenda derivative that also works with behavioral/anxiety challenges. Doc also said Mom was not on a high enough dose of Namenda at all (Dad had her dose cut in half 3 years ago - said she was too shaky - however that turned out to be her BP meds!).
Doc did the standard neuro exam - push against "my hands", look at "me" while he moved his fingers out of her direct vision. Mom has NO peripheral vision at all - up/down/right/left. Imagine having blinders on all the time - cut the bottom of a shoebox out, and walk around with that in front of your eyes...uh huh, that's what she sees. Has to be an issue with understanding, processing, crowds, personal space. I have to actually do this TO Dad as he says she is combative when she doesn't follow a conversation. I would be too, if I had no peripheral vision in addition to all of the other challenges she deals with.
As we were walking out of the office, Dad actually turns to me and says, "So, Mom can go with you and you can bring her home around 5 or so, and give her a shower?"
"No, I can't do that today" was all I said, seething inside. I know he needed a break, and he got one. It doesn't help to say I actually have a few jobs, that I work, that I have other family members in need (more needy right now, I wanted to say, than he is!!!). None of these words are heard. "I'll see you at 5:30", and I left to go on to the next, very important part of the day, visiting another family member in hospital. I did take about 30 minutes for me...while walking my dog, I also walked me!
What made this all worth doing on Monday was looking forward to giving Mom a shower that night. I get to speak loudly to her (hearing...), and tell her to get naked...I get her to the bathroom, in the shower, in the seat, and fix the water to her liking. They have one of those hand held showers, so I get to squirt her down, much like she tortured us when we were kids. "WASH YOUR HAIR...CLOSE YOUR EYES SO I CAN HOSE YOU DOWN." Yup! That part is fun for me, and she laughs but gives me evil looks, too. "GET THE SOAP...WASH YOUR FACE...ARMS..." I soap up her back, and it feels good to do something nice for her as I feel her relax under my hands. "NOW DO YOUR BOOBS"...this is my weekly haranguing of her...this week, when I said to do her boobs, though, she went back to her arms with the soap..."NO YOUR BOOBS". She looked at me funny and said, "I am" so I had to touch her boobs and say "THESE"..."Oh, why didn't you say so...", she laughed, and we finished up the shower. I bundled her up in 2 big towels, got her dried off and into her nice fluffy nightgowny thing and into the living room...said goodnight and left, chuckling all the way home.
Thank you for sharing these moments.
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