I would like to ask my fellow caregivers if they struggle with giving medications to the patients in their care. Possibly because the patient in our care is also a doctor, his daily meds are a constant battle. Every visit I have to think of new responses to his irritation at being given medication that he, himself did not prescribe. Dad makes what I have called his "asshole" face. It is a combination of irritation, condescension and victimization. He uses it in response to the process of taking care of him or if we are watching some interesting movie or program and does not want to admit he has gotten lost in the plot or forgotten the topic. I will put his meds next to his plate and he always pics up the Pradaxa (a blue and white capsule) first, gives me the asshole face and irately demands, "What's this??"
Answer #1: "It's your punishment for having children"
Answer #2: "It's a gift from the three wise men"
Answer #3: "It's a Smurf turd"
He is rarely amused and I get his standard response..."Wiseass!" I understand that the last thing he wants is to feel dependent on us, since that would be admitting that he can't take care of himself. Better to deflect his annoyance with an ill received joke then to get angry and try to force it on him...probably less dangerous, too.
Getting the asshole look during a movie or program is more challenging and far less amusing. It is better if he gets confused before the program really gets going. One time we started to watch City Slicker's 2, a movie he has enjoyed on clearer days, and as the opening credit cartoon continued he got lost and thought we were watching the actual movie. "This is CHAOS!!" he said angrily after staring me down with the asshole face didn't work. "Dad, it's just the opening credits!" I said exasperated. "The movie hasn't even started! Can you just wait?" He sulked through the first ten minutes of the movie, although I doubt he even remembered why he was angry. Over time I have found that movies with too much movement lose him pretty quickly and if the subject is not interesting enough to him, sometimes it is better to just turn it off and pop in a Columbo to save the evening.
No matter how hard we try as caregivers, we are human and bound to feel overwhelmed and angry. I can tell you for a fact I have had days that I am not particularly proud of as a caregiver...days that I would like to just wash my hands and be done with it all. I can tell you not to beat yourself up, that you are not a bad person for blowing up from time to time or wishing it was over, but without having contact with others who can relate, words are meaningless. In my own experience I have had days so low that as I turned the door knob to enter Dad's house, a part of me hoped I would find he had had some issue to put him in the hospital for a while just to give us all a break. Of course this never happens, he is always there in his chair ready to start hurling frustration and veiled desperation in my direction all night. Many would consider my position unusually lucky, with so many siblings directly involved in the care rotation, and for the most part they would be correct. On the other hand, it is also something of a forced march to look after Dad since he is an extremely stubborn, closed off person.
I can't help thinking if it had been Mom who had survived only to develop Alzheimer's, I think she would have been far easier to deal with and much more flexible about activities. Actually just thinking about the "what if it had been Mom" scenario, ideas for activities, hobbies and games flood into my head. Her interests were so broad, most of them could be simplified as the disease progressed.
Dad's interests are a focused few and trying to get him to venture into new territory is next to impossible. He has always been a bit of a hermit, never particularly social (his best friend lives 300 miles away and has seen him once in the past 10 years) with no regular friends or visitors other then family. Mom was the polar opposite; she participated in Garden Club, had a friend with whom she would power walk 3 miles a day, took her grandchildren to the park or the splash pond, basically loved getting out and seeing people. She was also a gifted seamstress, gardener and decorator, doing her own ceramic tile work in the master bathroom, sewing all the drapes and some of the upholstery, even dabbling in making simple stained glass windows for their home and Dad's office . How I wish Dad had this many outlets; It would make finding enjoyable outings and activities for him so much easier.
Recently Hillary brought an easel, large drawing pad and art supplies to Dad's house. As she was setting up a spot for Dad to draw he immediately began to protest, "This is yours? No, you should keep this, I don't need it". I could hear in his voice the translation, "I didn't ask you to bring this, nor do I want it. Take it back", but he was doing his very best to be polite about a kind gesture. Later I did some checking around online and discovered that drawing is highly recommended for Alzheimer's patients...the problem was getting him to try it. The next day when I came over I saw no new scribbles or sketches. Maybe we could try a sneaky approach. Certainly we could not rely on him to just naturally become inspired to draw...but perhaps setting up a subject he would find interesting would be enough of a nudge to get him in the chair. I grabbed a bar stool and one of his bird statuettes, a red parrot, and set it up next to the chair and easel. "What are you doing?" he asked. I replied, "Setting up a subject for you to draw. Hillary brought over her easel and art supplies to give you something interesting to do during the day". "Oh, she should take her things home. I don't want to take her things", he protested. Shortly after that, I sent Hillary a text letting her know what I had tried. She was so excited to know I had taken her attempt seriously and started thinking of other ways we could get him to the easel. The biggest obstacle, we felt, was that he would feel pushed if it was not his original idea. Perhaps we could tell him a little white lie and make him think it was he had expressed some interest in drawing. It was a possibility but probably would not work. Then Carrie had a truly inspired idea. Dad had been a professor and enjoyed teaching. Perhaps we could acquire a second easel and allow him to feel he was instructing us. It could work! But the next time I came over all of the art supplies were packed up. Bummer. I asked Hillary if she had had any luck but her answer was a short, "Not yet." Hillary is a talker, so a short answer is probably best left alone. It may be that the easel idea was doomed from the beginning but it sparked other ideas. Perhaps the real problem is not that he lacks motivation but the activities we are attempting hold no interest for him. Drawing and painting without a purpose might seem pointless to him. After all, when he was a surgeon he would do very complex, accurate drawings of bone and muscle structures. When building aircraft, his sketches were for the purpose of completing his project.
Perhaps puzzles would be worth trying or some other building activity. Maybe we could do some simple science experiments to see if he they would peak his interest. (This is a new idea and has not been tested. Time will tell.)
Something that definitely stimulates conversation is talking about new technology. A topic I recently brought up was the new water vapor/electronic cigarettes that people are using to quit smoking. One of my closest friends, Sara, effectively quit after almost 30 years of smoking using the e-cig. She updates me regularly on her progress. She had talked to me about quitting a few times before and I would tell her, "To be totally honest, the smoking worries me. I kinda like having you around." Although I have tried to subdue my enthusiasm, concerned that she might backslide, I really do believe she has quit for good. I was so excited for her, I told Dad about it. He was amazed and had lots of questions about the vapor cigs. Although the conversation looped a few times, Dad was thoroughly captivated by the subject, particularly since he had such a hard time getting patients to quit before surgery. It was wonderful to see him so engaged and brightened up with interest. It is so hard to find things that captivate him that way.
Before I became a caregiver, vacations were not a high priority. Not that we never took trips, but they were just fun getaways, not escapes from reality. It seems, now, like part of my mind lives for those escapes, looking up new places to go, making plans sometimes even years in advance. They are not just important but absolutely crucial in order to maintain sanity. Without them, I might eventually give in to the urge to drop everything, scoop up my husband and kids and flee from this life permanently. After a couple trips I learned it was better to rack up some dad care IOU's rather then come back from vacation to a week long stretch of visits. I find the latter defeats the purpose of going away in the first place.
Recently, I took the girls to visit Sara in Colorado. It was a fantastic, activity filled vacation. We drove to the top of Pike's Peak and the girls had a chance to see the world from the top of a mountain; what an awe inspiring view it was! We also visited the cliff dwellings in Manitou Springs. I know the kids enjoyed it even if it was a little like a class field trip in the middle of our vacation. Probably the most amazing thing we did, though, was climb to the top of Helen Hunt Falls. It took real effort to hike up the trail, being very careful with our footing because the gravel covered path could be treacherous in steep places. The view looking down from the top of the fall was breath taking. Of course hundreds of pictures were taken on the trip, not only of the scenery but of our youngest daughters bonding and her 19 year old son, Jake, and my Kelly playing on a playground like they did when they were little and Sara lived in Texas. They have always had a chemistry that just seems to spark as soon as they reunite. Jake and Kelly are both equally attractive and it may be that part of the electricity between them is that, after being friends for so many years, they know they can comfortably be themselves around each other. Sara and I always notice and try not to fire too many knowing smiles across the room as we watch the sparks ricochet all around them. Our not-so-secret wish is that one day that sweet chemistry develops into something more...so we take lots of pictures and keep our fingers crossed. The best part of the vacation, by far, was just hanging out with old friends. I didn't want to return home and often called Mike, jokingly telling him to pack his bag, sell the house and join us. It was very hard to leave and all the way home I thought about when we might go back.
Short, two or three day breaks can sometimes be as beneficial as long ones, much like a power nap in the afternoon can be as important as a good night's sleep. Mike and I sometimes will take one night stay-cations just for a change of scenery and a little private time. For our twelfth anniversary we took a two day trip to Eureka Springs, Arkansas and stayed in a cabin with a jacuzzi tub. It was incredibly romantic and relaxing, probably the most we have ever gotten from our travel dollar. The beautiful and peaceful scenery as well as the in-town sights were a fantastic "power nap" vacation. Again, we were not yet home before we began planning to return.
I know I am getting frustrated when I start browsing vacation sites in my free time. When my mind is preoccupied with escape, it is probably time to do just that, however brief the trip may be. Then again, it may also be a sign that I need to try a fresh approach to my responsibilities as a caregiver...or maybe it's both. Nerves as well as coping mechanisms can wear thin without the occasional change of scenery. Vacations are easy. Refreshing an attitude is considerably more challenging.
(to be continued)
Answer #1: "It's your punishment for having children"
Answer #2: "It's a gift from the three wise men"
Answer #3: "It's a Smurf turd"
He is rarely amused and I get his standard response..."Wiseass!" I understand that the last thing he wants is to feel dependent on us, since that would be admitting that he can't take care of himself. Better to deflect his annoyance with an ill received joke then to get angry and try to force it on him...probably less dangerous, too.
Getting the asshole look during a movie or program is more challenging and far less amusing. It is better if he gets confused before the program really gets going. One time we started to watch City Slicker's 2, a movie he has enjoyed on clearer days, and as the opening credit cartoon continued he got lost and thought we were watching the actual movie. "This is CHAOS!!" he said angrily after staring me down with the asshole face didn't work. "Dad, it's just the opening credits!" I said exasperated. "The movie hasn't even started! Can you just wait?" He sulked through the first ten minutes of the movie, although I doubt he even remembered why he was angry. Over time I have found that movies with too much movement lose him pretty quickly and if the subject is not interesting enough to him, sometimes it is better to just turn it off and pop in a Columbo to save the evening.
No matter how hard we try as caregivers, we are human and bound to feel overwhelmed and angry. I can tell you for a fact I have had days that I am not particularly proud of as a caregiver...days that I would like to just wash my hands and be done with it all. I can tell you not to beat yourself up, that you are not a bad person for blowing up from time to time or wishing it was over, but without having contact with others who can relate, words are meaningless. In my own experience I have had days so low that as I turned the door knob to enter Dad's house, a part of me hoped I would find he had had some issue to put him in the hospital for a while just to give us all a break. Of course this never happens, he is always there in his chair ready to start hurling frustration and veiled desperation in my direction all night. Many would consider my position unusually lucky, with so many siblings directly involved in the care rotation, and for the most part they would be correct. On the other hand, it is also something of a forced march to look after Dad since he is an extremely stubborn, closed off person.
I can't help thinking if it had been Mom who had survived only to develop Alzheimer's, I think she would have been far easier to deal with and much more flexible about activities. Actually just thinking about the "what if it had been Mom" scenario, ideas for activities, hobbies and games flood into my head. Her interests were so broad, most of them could be simplified as the disease progressed.
Dad's interests are a focused few and trying to get him to venture into new territory is next to impossible. He has always been a bit of a hermit, never particularly social (his best friend lives 300 miles away and has seen him once in the past 10 years) with no regular friends or visitors other then family. Mom was the polar opposite; she participated in Garden Club, had a friend with whom she would power walk 3 miles a day, took her grandchildren to the park or the splash pond, basically loved getting out and seeing people. She was also a gifted seamstress, gardener and decorator, doing her own ceramic tile work in the master bathroom, sewing all the drapes and some of the upholstery, even dabbling in making simple stained glass windows for their home and Dad's office . How I wish Dad had this many outlets; It would make finding enjoyable outings and activities for him so much easier.
Recently Hillary brought an easel, large drawing pad and art supplies to Dad's house. As she was setting up a spot for Dad to draw he immediately began to protest, "This is yours? No, you should keep this, I don't need it". I could hear in his voice the translation, "I didn't ask you to bring this, nor do I want it. Take it back", but he was doing his very best to be polite about a kind gesture. Later I did some checking around online and discovered that drawing is highly recommended for Alzheimer's patients...the problem was getting him to try it. The next day when I came over I saw no new scribbles or sketches. Maybe we could try a sneaky approach. Certainly we could not rely on him to just naturally become inspired to draw...but perhaps setting up a subject he would find interesting would be enough of a nudge to get him in the chair. I grabbed a bar stool and one of his bird statuettes, a red parrot, and set it up next to the chair and easel. "What are you doing?" he asked. I replied, "Setting up a subject for you to draw. Hillary brought over her easel and art supplies to give you something interesting to do during the day". "Oh, she should take her things home. I don't want to take her things", he protested. Shortly after that, I sent Hillary a text letting her know what I had tried. She was so excited to know I had taken her attempt seriously and started thinking of other ways we could get him to the easel. The biggest obstacle, we felt, was that he would feel pushed if it was not his original idea. Perhaps we could tell him a little white lie and make him think it was he had expressed some interest in drawing. It was a possibility but probably would not work. Then Carrie had a truly inspired idea. Dad had been a professor and enjoyed teaching. Perhaps we could acquire a second easel and allow him to feel he was instructing us. It could work! But the next time I came over all of the art supplies were packed up. Bummer. I asked Hillary if she had had any luck but her answer was a short, "Not yet." Hillary is a talker, so a short answer is probably best left alone. It may be that the easel idea was doomed from the beginning but it sparked other ideas. Perhaps the real problem is not that he lacks motivation but the activities we are attempting hold no interest for him. Drawing and painting without a purpose might seem pointless to him. After all, when he was a surgeon he would do very complex, accurate drawings of bone and muscle structures. When building aircraft, his sketches were for the purpose of completing his project.
Perhaps puzzles would be worth trying or some other building activity. Maybe we could do some simple science experiments to see if he they would peak his interest. (This is a new idea and has not been tested. Time will tell.)
Something that definitely stimulates conversation is talking about new technology. A topic I recently brought up was the new water vapor/electronic cigarettes that people are using to quit smoking. One of my closest friends, Sara, effectively quit after almost 30 years of smoking using the e-cig. She updates me regularly on her progress. She had talked to me about quitting a few times before and I would tell her, "To be totally honest, the smoking worries me. I kinda like having you around." Although I have tried to subdue my enthusiasm, concerned that she might backslide, I really do believe she has quit for good. I was so excited for her, I told Dad about it. He was amazed and had lots of questions about the vapor cigs. Although the conversation looped a few times, Dad was thoroughly captivated by the subject, particularly since he had such a hard time getting patients to quit before surgery. It was wonderful to see him so engaged and brightened up with interest. It is so hard to find things that captivate him that way.
Before I became a caregiver, vacations were not a high priority. Not that we never took trips, but they were just fun getaways, not escapes from reality. It seems, now, like part of my mind lives for those escapes, looking up new places to go, making plans sometimes even years in advance. They are not just important but absolutely crucial in order to maintain sanity. Without them, I might eventually give in to the urge to drop everything, scoop up my husband and kids and flee from this life permanently. After a couple trips I learned it was better to rack up some dad care IOU's rather then come back from vacation to a week long stretch of visits. I find the latter defeats the purpose of going away in the first place.
Recently, I took the girls to visit Sara in Colorado. It was a fantastic, activity filled vacation. We drove to the top of Pike's Peak and the girls had a chance to see the world from the top of a mountain; what an awe inspiring view it was! We also visited the cliff dwellings in Manitou Springs. I know the kids enjoyed it even if it was a little like a class field trip in the middle of our vacation. Probably the most amazing thing we did, though, was climb to the top of Helen Hunt Falls. It took real effort to hike up the trail, being very careful with our footing because the gravel covered path could be treacherous in steep places. The view looking down from the top of the fall was breath taking. Of course hundreds of pictures were taken on the trip, not only of the scenery but of our youngest daughters bonding and her 19 year old son, Jake, and my Kelly playing on a playground like they did when they were little and Sara lived in Texas. They have always had a chemistry that just seems to spark as soon as they reunite. Jake and Kelly are both equally attractive and it may be that part of the electricity between them is that, after being friends for so many years, they know they can comfortably be themselves around each other. Sara and I always notice and try not to fire too many knowing smiles across the room as we watch the sparks ricochet all around them. Our not-so-secret wish is that one day that sweet chemistry develops into something more...so we take lots of pictures and keep our fingers crossed. The best part of the vacation, by far, was just hanging out with old friends. I didn't want to return home and often called Mike, jokingly telling him to pack his bag, sell the house and join us. It was very hard to leave and all the way home I thought about when we might go back.
Short, two or three day breaks can sometimes be as beneficial as long ones, much like a power nap in the afternoon can be as important as a good night's sleep. Mike and I sometimes will take one night stay-cations just for a change of scenery and a little private time. For our twelfth anniversary we took a two day trip to Eureka Springs, Arkansas and stayed in a cabin with a jacuzzi tub. It was incredibly romantic and relaxing, probably the most we have ever gotten from our travel dollar. The beautiful and peaceful scenery as well as the in-town sights were a fantastic "power nap" vacation. Again, we were not yet home before we began planning to return.
I know I am getting frustrated when I start browsing vacation sites in my free time. When my mind is preoccupied with escape, it is probably time to do just that, however brief the trip may be. Then again, it may also be a sign that I need to try a fresh approach to my responsibilities as a caregiver...or maybe it's both. Nerves as well as coping mechanisms can wear thin without the occasional change of scenery. Vacations are easy. Refreshing an attitude is considerably more challenging.
(to be continued)
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