My father has Alzheimer's. He has had symptoms for about nine yrs, and, although his illness has become noticeably advanced in the past two years, he would still be considered in the moderate stage of the disease. The frustration of a caregiver differs from person to person as do reactions to new challenges. I suppose I am writing this as a form of self therapy and maybe in hopes of reaching out to others who have gone through or are in process of caring for someone with Alzheimer's. I want to write this as it is, without sugar coating or suppressing the natural feelings and emotional responses as I experience them. By doing this, maybe someone out there who needs it will understand that any feelings they have are normal and not to beat themselves up when things get overwhelming. This relentless disease has the power to bring people together as well as strain relationships. Our family has experienced both of these effects.
Perhaps the most difficult part of the progression of my father's condition has been witnessing the slow deterioration of a brilliant mind. My father was a genius, a plastic surgeon, building and flying airplanes, dabbling in experimental aircraft, active in the care and rehabilitation of injured birds of prey. I always said, of all of my friends I had the best "dad stories". He was also husband to a beautiful and loving wife and father of five children. He always looked out for us, although he could be hard and closed minded on the subject of worthwhile career choices. Dad made it very clear to each of his children that the only career choices worthy of consideration were engineering and medicine. The pressure was difficult for most of us. As a result, only my brother graduated with an engineering degree. I earned my degree in Accounting in my 30's. By then, my parents were willing to accept and assist with any degree with a future. My oldest sister also earned a degree in her 50's and the second oldest has a degree equivalency in medical knowledge and is a paramedic. High intellect is pretty common in my family...and makes a diagnosis of Alzheimer's even harder. About two and a half years ago, it became apparent that just visiting Dad a couple times a month was no longer sufficient. He would get lost driving to and from the grocery store, lose whole days and continuously repeat himself. He couldn't manage his own meds, even if you called to remind him to take them. Dad does not like being told what to do, especially by his children. I started noticing about this time that he even started to look different in photos. Something about his expression changed. The sharp intellect was starting to fade and the fear and frustration he must have been feeling began to appear.
I will be talking about my siblings frequently but don't wish to use their real names. For simplicity, here are the names I will use in order of birth: Hillary, Paula, Jenny, Tom and Erin (me).
Dad had always been there for me, for all of us, in hard times so when the call to regular duty as caregivers came, for the most part we all were ready and willing to step up to the plate. We all volunteered two to three meal shifts a week at between two and four hours each, depending on when we were available. Between five children with the help of spouses and grand children these were fairly easy to manage...at first. Unfortunately life has a way of throwing curve balls. One of my sisters was in advanced stages of liver failure. It is not necessary at this point to detail how she got there. The important thing is that she was in and out of the hospital for several years until her body just could not bounce back anymore. She was a key figure in my dad's life, the funny girl who could always make him laugh, the beloved Mothers Day baby, so loving and sweet, with hidden problems of her own. By the time she died, Dad had to be reminded frequently of things that just happened. We had to remind him at family gatherings why she wasn't there. It seemed cruel, like he had to relive the pain of losing her over and over. Since she was the closest daughter to my age (I am the youngest) he often mistook me for her when I would visit, asking why I didn't bring my dog. I would remind him that I rarely brought my dog and ask if he meant Ego, Jenny's dog. I could see he was disappointed, not that he wasn't glad to see me but he was sad to be reminded that Jenny wasn't coming back. Eventually he stopped asking about her. Oddly, he sometimes still thinks my mother is alive although she died ten years ago. I will be sitting in a recliner beside him watching a movie and he will see the chair on the other side of me and think Mom is in it and has fallen asleep. He will chuckle and motion to the chair "Looks like, Mom is down for the count". That's hard. I don't even want to move out of the way so he can see the chair is empty. We all felt the gaping hole Mom left. Losing Jenny left another gaping hole and meant an extra shift for everyone and added tension in the family.
Having a routine is very important. We each have our visitation habits.
Hillary works from home so she covers most weekday lunch shifts. She watches news shows with him and usually brings her boxer to play with dad's Australian shepherd. This is great for his spirits and gives his dog a playmate and the opportunity to run around. She loves to talk and tell Dad what new thing she has discovered, read about, or is up to.
Paula takes him to church, does much of the handling of his bills and filling his med containers. Tami is the person to contact about things regarding Dad, his house or his care. Since mom's passing she is unofficial head of the family. I think most families have a person who is "the responsible one". In our family it's Paula. She is so in control that from time to time Dad has mistakenly referred to her as his wife. She carries a heavy burden but she does it with a smile. Paula also has a grown son, Bradley, with a wife and child of his own. Bradley helps taking a two or three shifts a week. He is a wonderful help.
My brother, Tom, shares his family with dad, bringing his wife and daughter with him to visit, sometimes bringing Dad to his house for a home cooked meal. In addition to being a mechanical engineer he also builds and flies planes in aerobatic competitions. He and Dad never have a shortage of conversations. Tom also has his own responsibilities complicating visitation. His wife, Anne, has MS and has had extensive problems with treatment. Of all of us, Tom probably has the hardest time coping with the tremendous responsibilities on his shoulders.
Finally there is me. I have a husband, Mike, a seventeen year old daughter, Kelly, and an eleven year old daughter, Allison. My nights are usually movie nights. I have come to learn the types of movies that are a sure thing, the ones that are a gamble and the ones that are a sure disaster. On the one hand, when I discover a movie or series that he enjoys is great because he retains little if any memory of the plots and I can often repeat the same discs several times without him getting tired of them. On the other hand, once he latches on to an idea he will start something I call looping. He will repeat the same statements, jokes or ideas over and over. He loops every time I visit him but some days are worse then others. Some days he will only loop five to ten times. Bad days he might loop between twenty and fifty times....not an exaggeration. The best thing I have found to do to end a loop is give him a response that nudges him in a light hearted way. For example, we were watching the movie Tombstone. This is a great movie for him as he likes westerns, it is current enough for him to recognize the actors but not so complex that he gets lost in the middle, and he kind of knows the back story. Invariably when watching this he will start looping on Doc Holliday's illness, informing me over and over, "He has TB". Before the Alzheimer's really got a foot hold, Dad always took great pride in being the smartest person in the room and even greater delight in rubbing it in. Knowing this, I don't want to hurt his feelings but after about the tenth "He has TB" I want to scream "I KNOW HE HAS TB!!! I PROBABLY KNOW MORE ABOUT HIM THEN YOU DO!!!"
Of course I don't say that. I just wait for it again..."He has TB." to which I fire back "Or NOT TB!" with a smile. He shoots me a look that's as much to say "Wiseass!!" A minute or two later he has forgotten and..."He has TB". "Or NOT TB!" (giggling). "You just think you're so funny!" ....this one made a little bit of a dent because it only took one more "He has TB"..."Or NOT TB!" to end the loop. That was one of the most fun loops. Not all are that fun but I like to make the most of the good ones.
(to be continued)
Perhaps the most difficult part of the progression of my father's condition has been witnessing the slow deterioration of a brilliant mind. My father was a genius, a plastic surgeon, building and flying airplanes, dabbling in experimental aircraft, active in the care and rehabilitation of injured birds of prey. I always said, of all of my friends I had the best "dad stories". He was also husband to a beautiful and loving wife and father of five children. He always looked out for us, although he could be hard and closed minded on the subject of worthwhile career choices. Dad made it very clear to each of his children that the only career choices worthy of consideration were engineering and medicine. The pressure was difficult for most of us. As a result, only my brother graduated with an engineering degree. I earned my degree in Accounting in my 30's. By then, my parents were willing to accept and assist with any degree with a future. My oldest sister also earned a degree in her 50's and the second oldest has a degree equivalency in medical knowledge and is a paramedic. High intellect is pretty common in my family...and makes a diagnosis of Alzheimer's even harder. About two and a half years ago, it became apparent that just visiting Dad a couple times a month was no longer sufficient. He would get lost driving to and from the grocery store, lose whole days and continuously repeat himself. He couldn't manage his own meds, even if you called to remind him to take them. Dad does not like being told what to do, especially by his children. I started noticing about this time that he even started to look different in photos. Something about his expression changed. The sharp intellect was starting to fade and the fear and frustration he must have been feeling began to appear.
I will be talking about my siblings frequently but don't wish to use their real names. For simplicity, here are the names I will use in order of birth: Hillary, Paula, Jenny, Tom and Erin (me).
Dad had always been there for me, for all of us, in hard times so when the call to regular duty as caregivers came, for the most part we all were ready and willing to step up to the plate. We all volunteered two to three meal shifts a week at between two and four hours each, depending on when we were available. Between five children with the help of spouses and grand children these were fairly easy to manage...at first. Unfortunately life has a way of throwing curve balls. One of my sisters was in advanced stages of liver failure. It is not necessary at this point to detail how she got there. The important thing is that she was in and out of the hospital for several years until her body just could not bounce back anymore. She was a key figure in my dad's life, the funny girl who could always make him laugh, the beloved Mothers Day baby, so loving and sweet, with hidden problems of her own. By the time she died, Dad had to be reminded frequently of things that just happened. We had to remind him at family gatherings why she wasn't there. It seemed cruel, like he had to relive the pain of losing her over and over. Since she was the closest daughter to my age (I am the youngest) he often mistook me for her when I would visit, asking why I didn't bring my dog. I would remind him that I rarely brought my dog and ask if he meant Ego, Jenny's dog. I could see he was disappointed, not that he wasn't glad to see me but he was sad to be reminded that Jenny wasn't coming back. Eventually he stopped asking about her. Oddly, he sometimes still thinks my mother is alive although she died ten years ago. I will be sitting in a recliner beside him watching a movie and he will see the chair on the other side of me and think Mom is in it and has fallen asleep. He will chuckle and motion to the chair "Looks like, Mom is down for the count". That's hard. I don't even want to move out of the way so he can see the chair is empty. We all felt the gaping hole Mom left. Losing Jenny left another gaping hole and meant an extra shift for everyone and added tension in the family.
Having a routine is very important. We each have our visitation habits.
Hillary works from home so she covers most weekday lunch shifts. She watches news shows with him and usually brings her boxer to play with dad's Australian shepherd. This is great for his spirits and gives his dog a playmate and the opportunity to run around. She loves to talk and tell Dad what new thing she has discovered, read about, or is up to.
Paula takes him to church, does much of the handling of his bills and filling his med containers. Tami is the person to contact about things regarding Dad, his house or his care. Since mom's passing she is unofficial head of the family. I think most families have a person who is "the responsible one". In our family it's Paula. She is so in control that from time to time Dad has mistakenly referred to her as his wife. She carries a heavy burden but she does it with a smile. Paula also has a grown son, Bradley, with a wife and child of his own. Bradley helps taking a two or three shifts a week. He is a wonderful help.
My brother, Tom, shares his family with dad, bringing his wife and daughter with him to visit, sometimes bringing Dad to his house for a home cooked meal. In addition to being a mechanical engineer he also builds and flies planes in aerobatic competitions. He and Dad never have a shortage of conversations. Tom also has his own responsibilities complicating visitation. His wife, Anne, has MS and has had extensive problems with treatment. Of all of us, Tom probably has the hardest time coping with the tremendous responsibilities on his shoulders.
Finally there is me. I have a husband, Mike, a seventeen year old daughter, Kelly, and an eleven year old daughter, Allison. My nights are usually movie nights. I have come to learn the types of movies that are a sure thing, the ones that are a gamble and the ones that are a sure disaster. On the one hand, when I discover a movie or series that he enjoys is great because he retains little if any memory of the plots and I can often repeat the same discs several times without him getting tired of them. On the other hand, once he latches on to an idea he will start something I call looping. He will repeat the same statements, jokes or ideas over and over. He loops every time I visit him but some days are worse then others. Some days he will only loop five to ten times. Bad days he might loop between twenty and fifty times....not an exaggeration. The best thing I have found to do to end a loop is give him a response that nudges him in a light hearted way. For example, we were watching the movie Tombstone. This is a great movie for him as he likes westerns, it is current enough for him to recognize the actors but not so complex that he gets lost in the middle, and he kind of knows the back story. Invariably when watching this he will start looping on Doc Holliday's illness, informing me over and over, "He has TB". Before the Alzheimer's really got a foot hold, Dad always took great pride in being the smartest person in the room and even greater delight in rubbing it in. Knowing this, I don't want to hurt his feelings but after about the tenth "He has TB" I want to scream "I KNOW HE HAS TB!!! I PROBABLY KNOW MORE ABOUT HIM THEN YOU DO!!!"
Of course I don't say that. I just wait for it again..."He has TB." to which I fire back "Or NOT TB!" with a smile. He shoots me a look that's as much to say "Wiseass!!" A minute or two later he has forgotten and..."He has TB". "Or NOT TB!" (giggling). "You just think you're so funny!" ....this one made a little bit of a dent because it only took one more "He has TB"..."Or NOT TB!" to end the loop. That was one of the most fun loops. Not all are that fun but I like to make the most of the good ones.
(to be continued)
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