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Archive for February, 2012

I walked to the mailbox today and what did I find – a jury duty notice for Uncle C! For some reason I just found that hysterical. I can just picture this 93-year-old man, hunched over, back in the shape of a C, walking into the courtroom pushing his three-wheel walker with his caregiver in tow. I didn’t even know he had registered to vote in our parish, but apparently he did. Once you are a registered voter you are fair game.

Actually Uncle C would probably go just to get out of the house and have something different to do other than sit around all day watching the stock market and listening to his caregiver yell into the phone. Her voice is rather LOUD and she is on the phone constantly! But I can’t pass up the opportunity to call up the Court and tell them about Uncle C. The conversation might go something like this:

“Hello, I’m calling on behalf of Uncle C. He has been called to jury duty. I’m afraid he won’t be able to make it unless the judge agrees to hold court in our home. And the good judge will have to agree to many small breaks so Uncle C can go to the bathroom every 15 minutes. Oh, also, he needs to lay down at least once an hour. That back of his, the one that is shaped like a C is very bothersome and he must lay down to help with the pain. Hope the judge doesn’t mind having a juror on pain killers, lots of painkillers, very strong painkillers.  One other thing, Uncle C doesn’t hear very well.  You can ask him to put in his hearing aids, but he’ll only agree to wear one.  He thinks he doesn’t need one in his “good ear”.  Heads up, he can’t hear in either ear so you’ll have to talk very loud.  If you notice him just sitting there grinning at you, that means he can’t really hear you nor understand you.  And by the way, if the trial goes on past 5:00 p.m., you will have to furnish Uncle C with a toddy otherwise he will begin to shake and walk around aimlessly.   You see, Uncle C is 93 years old, but he’s willing to do it. In fact, he would probably love it. My house really isn’t large enough to hold court, but I do have a nice patio and backyard. Maybe we could set up there. Hope the weather is good. Anyway, just let me know and we’ll try to accommodate everyone, otherwise Uncle C won’t be able to make it.   🙂

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Dad took mom to have her nails done this week and then drove directly to my house afterwards. When they arrived mom still had on the little foam flip-flops and the toe separators she was given at the salon. I noticed it was taking them a long time to get out of the car so I walked out to see if there was a problem. Dad was struggling to get mom’s feet into her normal sandals as mom wiggled her fingers and toes at me, as excited as a child about her freshly painted nails. She had gotten a French mani/pedi which was so darn cute! She has had her nails done in the past but never a French manicure and she was tickled pink about it. As we sat on the patio mom kept wiggling her toes and admiring her hands, asking me repeatedly, “Don’t they look good?” “They sure do mom. Now don’t go and do dishes, that might mess up your nails,” I replied. “Oh, I won’t!” she said. Well, mom hasn’t done dishes in at least a year and a half, but she seemed excited at the prospect of being relieved of dish duty.

When they came by the next day mom had her feet in closed-toe shoes, but the minute she sat down on the patio she removed the shoes and again proceeded to wiggle her fingers and toes at me. “Oh good, I see you haven’t done any dishes. Your nails still look perfect.” Mom just beamed!

Such simple things make her so happy now and I’m thankful for that.

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Funny thing about dementia – it eats away at the short-term memory, but leaves the long-term in tact. Why is that? Does the brain have a black hole that sucks in memory of present day events? Perhaps memories of the past are far enough away from this hole that they are safe and can resist the pull. Mom can recall the names of people that she has not seen or thought about in years, but can’t tell you if she had breakfast. She can remember the names of far away random towns that they visited 20 years ago, but can’t remember that her great-granddaughter has been in Georgia all week visiting her other grandparents. Every day when I drive up mom is looking, looking, looking, “Is that a little blond head I see in your car?” she asks. “No, mom she’s still in Georgia. She won’t be back until Sunday,” I respond. The very next day, “Oh, here comes Peanut!” “No, mom, she won’t be back from Georgia until Sunday. I miss her too.”

Where does it all go? How is the memory of something here one minute but gone the next? I’m thankful that mom still remembers that she has a great-granddaughter, but how does the memory of her being away for the week just disappear?

Through it all mom continues to hold on to that stubborn pride of hers. For once I am thankful. At times she is still aware enough of her situation to play along, acting like everything is okay, that she can still remember simple things or making it up as she goes if she has to. “Did you watch American Idol last night mom?” I asked. “Oh yes, we watched it,” she responds. “I missed it. Was the girl who fell off of the stage okay? Did she make it through to the next round?” I ask. After a brief pause Mom answers, “Oh she was fine. No, she didn’t make it.” A couple of days later I asked dad about Idol, “So you and mom have been watching Idol dad?” “No, we keep forgetting to watch,” dad responds. “You haven’t seen any of them?” I ask. “No, not one.” So mom just made it all up, just played along when I ask her about it. It was so strange. I guess she just couldn’t remember so it was easier to go along than to admit that she couldn’t remember.

I wonder how many other things she is making up? How many other things is she covering up? I have friends tell me often that they have seen mom at the store or doctor’s office and that she looks good. They are always surprised that she still remembers them. Of course she remembers them, she hasn’t seen them in 30 years! If she had only met them yesterday she probably would not remember. And what they don’t know is that when mom is around people she knows she puts her game face on. She will chat and act like all is well. I don’t know how she walks that tightrope between normal and completely lost, but somehow she manages. She does such a good job of it at times that I wonder if she really has dementia. But then I take a step back and look at the whole picture – the hallucinations, the questions asked repeatedly, the lack of memory of current everyday events and as much as I hate to admit it, yes, my mother does have dementia. And it sucks.

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When I arrived to visit my parents recently, dad was in his workshop with my son working on a project. Mom was inside alone, sitting in her Lazy Boy watching GAC. The minute I walked in she perked up. Since dad was occupied with other things it was just mom and me, hanging out. She seemed genuinely happy and excited at the prospect of having me all to herself. We drank coffee and chatted – like old friends – like old times. And I really enjoyed it.

Since all of this began with mom we haven’t had much time together, just her and I. We used to go shopping and have lunch together often, but she no longer cares to do that. I don’t think she can, physically or mentally. In the past mom was the big talker and dad said little. Now, mom sits quietly while dad does the talking. I never knew he had so much to say! Even when I direct a question at mom, dad will usually jump in and answer for her. So she and I just sitting and chatting over coffee was very special. Dad rarely leaves mom alone so we don’t get much time together, just the two of us. But I need to figure out a way to make that happen. I think it would be good for both of us.

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Uncle C has been with us for almost a year. He arrived at our home on February 28, 2011, two days after the death of his beloved wife. At 93 years old he is a simple man, not wanting for much. He is kind. He is gentle. He doesn’t ask for a lot. We are very lucky in that aspect. If we had to have an elderly loved one living with us, he’s about as easy as it gets. But (here’s the but) – he is passive aggressive in his own sweet little way. Sometimes it’s kind of funny. Actually I kind of play with it a bit just cause it’s so cute. In the afternoon as 5:00 o’clock nears, if I am busy and haven’t brought Uncle C his “toddy”, I can hear his walker clanking down my hall as he makes his way to the kitchen, grin on his face. He doesn’t say a word, doesn’t ask for his drink, just circles – smiling. Just stands there – smiling, never giving up. “Are you ready for your toddy Uncle C?” I finally ask. Looking at his watch with a look of surprise on his face he exclaims, “Oh, I guess it is that time!” as he heads back down the hall to the living room, grin still on his face, in anticipation of the toddy that he loves so much. He does the same when it’s time for his breakfast – and his lunch. Just circles, smiling, waiting for someone to notice that it is time. That’s harmless enough. But there’s more.

He can be as stubborn as he is kind, in that same passive agressive way. Since he has been with us, Uncle C has seen almost every type of doctor around. There’s always something he wants to have checked out. “I think I need to see a foot doctor. My toes look like little blocks of wood. They don’t hurt, just look like wood”, or “I think I need to see the eye doctor again, my glasses have gone bad.” He has a lot of free time on his hands and plenty of it is spent thinking about his health or little things that are bothering him. He has been in and out of the hospital several times in the last year. Sometimes it is just a run to the emergency room. Sometimes they keep him for a few days or a week or two. It’s always the same – shortness of breath, weakness, dizziness. A couple of times pneumonia which goes along with the shortness of breath, weakness and dizziness. When he gets scared enough he pushes his magic little “I’ve fallen and I can’t get up” button in the middle of the night and away we go. Uncle C has been diagnosed with congestive heart failure and has a pacemaker, but doesn’t believe there’s a thing wrong with his heart. “I have the heart of a 17 year old!” he likes to tell people. What? Are you kidding? And the troubles Uncle C keeps experiencing are mostly of his own doing. You see, he HATES taking his fluid pills. He HATES going to the bathroom all the time. He HATES the incontinence – “It’s gross!” he says. So, when he starts feeling good he simply refuses to take the pills, usually in his passive aggressive way. Sometimes he doesn’t tell us, just discretely slides it off of the table onto his lap then flushes it or down the drain it goes. Sometimes he crushes it in the little bit of oatmeal he has left in his bowl, proclaiming he is full and cannot eat another bite. And sometimes he just flat out says, “I’m not taking that pill today. Who wants to go to the bathroom all the time.” What are we to do? He’s a 93 year old adult. It’s not like I can hold him down and shove it down his throat or wrap it in a piece of weiner and give it to him like you would a dog. Oh, he knows exactly what he’s doing. He knows the consequences. When his breath gets too short, when he gets too weak and dizzy and his ankles look like fat sausages squeezed into his socks, he begins taking them again. Only sometimes it is too late, the damage is done and away we go, hospital bound.

As he goes about his content little life with everyone scurring around waiting on him, he doesn’t seem to realize how his actions, or lack of, affect those around him. Yes, he’s not going to the bathroom as much, good for him. But what he doesn’t realize is that every time he pushes that magic little button in the middle of the night my husband and I are startled out of a deep sleep to the sound of “Your Life Alert has been activated” screaming at us. We race to his room to check on him. With a 93 year old you just never know… Sometimes it’s just, “Can you get me a pain pill and by the way is the coffee ready?” at 4:00 in the morning. Other times he is in a panic, so filled with fluid that he can’t breath and off to the hospital we go. Whether it is simply that he needed something or we end up calling for an ambulance again, when it is all said and done, my husband and I have to continue with life as usual. We still have to go to work and be productive, I still have to tend to my parents daily, still have to come home and cook, clean, do laundry, etc., on very little sleep. It’s exhausting, both physically and emotionally.

And then there are the medical people, doctors and nurses, lecturing to us about the importance of him taking his fluid pills as prescribed. Oh really? Like we don’t know that. I’d just once like to tell them, “Hey, why don’t you come over every morning and force him to take it? And good luck with that.” It’s not like Uncle C is mentally incompetent. He’s really still very sharp. He sits all day, watching the financial channel, following his stocks, selling and trading. He just had me order him the newest Dell laptop computer to replace his old Toshiba so he can research his stocks easier. How many 93 year olds are doing that? So, yes, we do know the importance of the medication being taken as prescribed. And yes, we have stressed to Uncle C the importance of him taking his medication regularly. But beyond that, it is really out of our hands. I do, however, resent him a bit when his choices affect me and my husband so drastically. But what are we to do? We have made a commitment to care for him. But damn, Uncle C, just cooperate a bit!

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Dad asked me to stay with mom while he had some work done on their car.  I readily agreed.  He thought he’d be gone the entire day and knowing that mom sleeps most of the morning I planned to clean their house while she was asleep.  Dad always refuses whenever I offer to clean it for them.  It’s that stubborn pride thing.  But knowing the house really needed a good cleaning this was my opportunity.

The day before dad took me aside and gave me a crash course on caring for mom, i.e. how to change her ostomy, how to empty the ostomy if it got full again, when to give mom the tons of pills she takes daily, etc., etc.  Then he gave me directions to the beignet/coffee shop in case mom awoke before he returned and insisted on going for beignets as she does every single morning.  “What time should I get her up dad?” I asked.  “Oh, just let her sleep.  Getting her up is almost impossible,”  he replied.

I arrived at their home at 7:15 with cleaning supplies in hand.  Dad was already gone and mom sound asleep.  I dove in, happy to finally feel like I was doing something helpful for them.  I scrubbed the old food stuck like cement off of the kitchen counters. Neither seemed to notice things like that anymore.  I washed dishes, dusted the dining area, mopped the floors, I was feeling good about it all.  Then I got to the living room – the room filled with pictures of the past, of my mom and dad when they were much younger, pictures of them holding the grandchildren as infants, mom bright eyed and excited.  This room whose shelves hold numerous souvenirs from the hundreds of trips they have taken together over the years, reminders of a better time.  There are wedding pictures of mom and dad, of my husband and me, of my sister and her husband, all of us much younger and carefree.  Never would any of us have imagined that my parents’ lovely life together would end up like this, dad caring for mom as she slowly forgets all of the things she loved so much and held so dear.

It was such a bittersweet day – sweet because I was doing something productive, doing something concrete to help them and happy to do it.  Bitter because of the sadness I felt going through the things mom held precious, touching the items she lovingly placed on display only to no longer recall much of why they were so special.

Who knows what the future will hold for me.  Who knows whether or not I will end up just like my mother, slowly losing memory of everything that I love and I hold dear.  I try not to dwell on it.  There’s not much I can do to change the future. I’ll keep working at staying healthy, keep working at keeping my mind sharp. I loathe the thought of my husband or my children one day having to care for me as they watch the slow demise of my mind.

My prayer for today – Lord, please keep me strong. Keep me strong in both mind and body. There are so many relying on me and I can’t let them down.

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