Disintegration of filters

As Alzheimer's progresses, patients start to loose the filters that make everyday socialization pleasant. When I first started caring for my dad I usually brought the girls along to help and Mike would meet us there after work. As Dad's condition has progressed, some disturbing symptoms have caused me to limit the children's exposure to him. My father grew up in a different time. He lived through WWII as a boy, saw desegregation, served in the military during Vietnam, witnessed the cold war and the fall of the Berlin Wall, saw the women's rights movement and affirmative action. He lived in a time when bigotry was widespread and silently acceptable. When most of one's life has been spent harboring accepted bigotry, no matter how one might try to get over it or at least keep it under wraps as social climates change, those feelings often remain under the surface. People who carry prejudice with them through social change, filter their thoughts and feelings and what they express to others. Alzheimer's causes the filters to slowly disintegrate, much to the embarrassment and dismay of their caregivers.

Our family lives in a racially blended part of Texas,  firmly embedded in the bible belt. Both of my daughters are blond and blue eyed in schools that are primarily black and Hispanic. Dad had never hidden his prejudice from his children growing up but was at least able to maintain respectful silence and curb his natural desire to speak his mind in mixed company. A few years ago these filters slowly gave way at very awkward times. I would have a hard time pin pointing when exactly I noticed his growing lack of self-censorship but it only took one of Kelly's choir concerts for me to stop  wanting to bring him. For some reason Dad is incapable of whispering so amid having to remind him repeatedly of why we were all sitting in the high school theater, he would punctuate the performance with lovely statements like "Look at all the spooks!" and "Doesn't this school have any white kids?". Even more embarrassing was when he not-so-quietly called attention to the cornrow hairstyle of the young girl sitting in front of us. I resolved not to bring him to any more performances but occasionally Paula would bring him anyway, cautiously sitting in the far back.

His remarks were just as bad, in fact blatantly worse, during visits to his home. Baseball, once something we could enjoy together is now completely off the table...particularly the start of the game with the national anthem. To say Dad is a purist would be putting it mildly. He hates when a soloist gets creative or puts some soulful or R&B spin on it. When that happens, which is most of the time, He will erupt, yelling, "God DAMMIT!! Why can't they just sing it like it is??"

One of the worst incidents was after the Boston Marathon bombing. After the bombers had been identified, I had to go over for a visit. He sat at the table and I turned on the news as I made dinner. Of course there was a report on tv about new developments. As I put food on the table and sat down he suddenly became very angry about the report and blurted out "Why do we keep letting these god damned jews in the country??" I tried to stay composed but he had really hit a nerve. Mike is Jewish. I barely kept my cool as I said "Dad, those aren't Jews. They are Chechnyans and Jihadists. My husband is Jewish." He wouldn't let go, though, inspite of actually seeing the report on the TV in front of him. "Yes they are! They're GOD DAMNED JEWS!!"
I lost it...I slammed my hands on the table and exploded "NO! THEY! ARE! NOT! THEY ARE CHECHNYANS AND TERRORISTS!!! MY HUSBAND AND YOUR GRAND DAUGHTER ARE JEWISH!!!" I had never in my life yelled at my dad so he sat there stunned for a few seconds. Then, in a move of complete denial, he said "You need to leave now". I replied angrily, "That is an excellent idea"...grabbed my things and walked out. I was shaking and didn't start to cry until a few blocks away. I called Paula and choked out what had happened. She was horrified but quickly jumped to dad's defense. "You know it's just the disease, don't you Erin. Dad loves Mike and has never had a bad thing to say about him. It's not about Mike. It's the disease."  We talked about it for a while, about how it's not just the bigotry. He frequently will just call people on TV assholes for no apparent reason. As Paula said, "It's as if he just fancies the sound of it. Like he knows he can get away with it and enjoys that little bit of control."

Let me be clear, I know it's the disease. I cannot express that enough. Two days later the memory of that incident was wiped from his memory as if it had never happened...and somehow that doesn't make it any better. Since that incident I have had a much harder time tolerating his out bursts and will stubbornly call him out on them. Being stubborn is rarely productive but at least there is some satisfaction in voicing my distaste.

It's easy enough to tell the kids that grandpa is not able to control some of the things he says but sometimes he gets too personal. Neither of my girls are tall and sometimes he has asked uncomfortable questions about whether they have shown signs of puberty such as body hair, development of curves, etc, out of concern that they may stop growing and forgetting that Allison is already being treated for IGHD. It would not bother me so much if he was only asking these questions once but for some reason his concern triggers a loop. Kelly was a late bloomer and endured the questions a couple of times before she started asking not to come along on visits. When Dad started asking the same questions about Allison I stopped bringing her as well, afraid his questions would make her self conscious.

When Kelly finally matured she turned out to be quite curvacious, triggering another loop. Every time he would see her he would tell me, "Your problems have just begun", not realizing that he says that every time she comes over. I think he means it as a compliment but I find it a little sexist especially after I tell him, "She's pretty smart. I'm not worried." to which he responds, "Just wait..." and mimicking a girl's voice, "Mom, I'm pregnant."  Comments like this really chap me. He doesn't realize he's not warning me about potential problems I'm not already aware of, he thinks he's being the voice of wisdom and experience...really it sounds more like he is questioning my parenting ability and her ability to exercise good judgement.

Dad can be very chauvinistic in his views, something I find strange considering how he pushed his daughters toward the sciences, encouraging us toward engineering, a male dominated field. Finding himself in the position of being cared for by his children, four of whom are girls, has been difficult for him. He will frequently lash out in juvenile ways, feeding his dinner to the dog right in front of us if he would rather not eat, stubbornly refusing to take his medication unless there is some incentive like a dessert, refusing to bathe for days no matter how we plead with him. Sometimes it's like arguing with a six-year-old. When he finally is forced to give in and do whatever we are asking, he will disdainfully exclaim, "WOMEN!!" Most of the time I blow it off but one time on a particularly trying visit I shot back, "WOMEN are keeping you alive! You're welcome!" Another time he said, "You're as bad as your mother!!" I responded, "Thank you! And you're welcome!" , spinning it as a compliment.

He is a master at finding the thing you are most sensitive about and sticking you with it. For me it's my height. I am 4' 11" and am usually the shortest person in the room. My parents never made me feel small or that my height was a setback. That is why it surprises me that he likes to jab me about my height; he never used to do that. Now if I knock on the door of his house and he comes to open the door he will make a big show of looking over my head and pretending he can't see anyone at the door, pretending to turn to walk away. The first time he did that was mildly amusing but it quickly lost it's charm after he repeated it over and over and over and over, seriously the longest loop he's ever had since it's still in progress even today.  After a while it just started pissing me off and making me feel defective and unappreciated. The first time he did it I laughed, maybe even the second time. By the third time it was old and I just said, "Hilarious", as I walked in. After that I said, "Ha ha, I'm short, you're old...can we just have dinner?" After a while I wouldn't even knock but would let my self in so he couldn't pull his trick at the door, but it didn't matter...he just did the same stupid joke as he sat in his chair. The only way I avoid the joke now is to play with his giant, over excited dog when I walk in, effectively distracting him long enough to forget his joke.

I can't help getting riled up by his constant jabs and seeming ingratitude. I know the reality is that he is always glad to see me and never wants me to leave. Whenever I say I have to leave, no matter how long I've been there he protests, "NO! You just got here!!"
"No, Dad, I've been here for hours" I tell him."I gotta go."
"Why???"
"Because I don't live here. I have a husband and kids."
"Well, why'd you go do a dumb thing like that?"

No matter how angry he makes me or how he tries to guilt me, I know he's just afraid to be alone. The house is so empty without mom, and since he can't remember from day to day who visits and how often, he has no idea the effort we are all making to keep him in his own house for as long as possible so he feels safe and has some sense of control. Being in a position of power has always been so important to him that to lose authority over his own life could be devastating. Paula and Hillary believe that to move him out of the house he and mom shared would be a death sentence. Knowing Dad, they are probably right.

Not the beginning...(part 2)

As a caregiver, family and social life often take a back seat to new responsibilities. Sacrifices of time and energy escalate slowly but when they are felt by those around you, you end up repeating and explaining yourself as often to outsiders as you do to the Alzheimer's patient you are looking after. My situation is not uncommon. With children and a husband at home, the demands of being even a part time caregiver frequently wear me down. 

As I have mentioned, I am a mother of two gorgeous daughters 6 years apart. Both of them got every good gene we had in the looks and personality departments. They have completely different dispositions, Kelly being outgoing and social, Allison being introverted and cerebral. What is funny about these two distinctions is that Kelly tends to be more sober and serious while Allison is the prankster. I would have no difficulty believing it if Kelly became a forensic scientist and Allison became a stand up comedian.

Kelly, my seventeen year old daughter by my first marriage, is profoundly intelligent. We knew she was going to be exceptional at a very young age by how quickly she learned to read, write and draw. At age six when her classmates were still drawing stick figures, Kelly drew a complex picture of herself looking in the mirror. Her teacher was astounded as were we. She was always able to excel in school with very little effort. Although Kelly is very independent and practically a grown up now, I know the reduced time I have to spend with her has bothered her. I try to schedule plenty of one on one time with her and make sure she knows when I will be home. When something is bothering her she will ask me if we can go for a drive or go out for coffee. Since I spend almost half of my nights taking care of my dad, the pressure to make the most of those outings has increased dramatically. The one positive thing I hope she gets out of seeing me looking out for my father is how important family is, and that we take care of each other, especially those who have taken care of us.

Allison, on the other hand, is an old soul, and lives to laugh and make others happy. In some ways Allison is also a much more complicated child then Kelly ever was through no fault of her own. She has isolated growth hormone deficiency (IGHD) and requires daily injections in order to grow to a normal adult height. She inherited her disorder from me. I also received injections back when the treatment was experimental and the injections contained cadaver hormone. My treatment started when I was three and continued until I was fourteen. My pituitary produced trace amounts of growth hormone and my injections had to be mixed by my parents. I was fortunate that my father was a doctor and was able to pull a few strings to get me into the study that allowed me to get these injections. Without them I would have been a "perfect" dwarf with limbs proportionate to my body but considerably smaller then the average adult. Having already gone through this, we were alerted to Allison's condition unusually early. We became suspicious when she was three months old and alarmed when at six months she still had not outgrown her 0-3 month clothing. After a series of tests it was determined that, not only did she have IGHD, but her condition was more extreme. She produced no detectible hormone. The endocrinologist had no difficulty recommending treatment right away. Injections are far more advanced then when I received them. Cadaver hormones are no longer used. Modern medicine has produced genetically engineered, synthetic growth hormone with fewer potential risks. She began her treatment at nine months old and will continue with the injections until she stops growing. Today at age eleven she is approaching he 4000th injection. Allison also has ADHD. She had always done fairly well in school so we were not alerted to the extent of her problem until she was unable to pass a standardized state reading test. Since we have observed acute intelligence but lack of focus in the past we had her tested and she was diagnosed  with ADHD. She started daily treatment and the difference was instant and profound. Allison is a brave kid and my hero. She is sweet, gentle and creative and has such a wonderful heart.

Somehow with our busy lives, the girls have handled the limitations of time available for homework, extracurricular activities and fun mom and dad time fairly well. They seem to understand that this is the way things are and they make the most of the precious time we have together. When it appears they need more out of us, we rethink the schedule and find ways to compensate. 

My friends are a close few most of whom I have known for over half my life. The popularity of Facebook allowed me to reconnect with some I had lost track of over the years.  As a result my circle of friends is much larger then it was five years ago. One couple in particular are our friends Leeann and Andrea. When we reconnected with Lee, she and Andrea were not yet dating. She was actually still dealing with a difficult breakup. At first I chatted with her on Facebook and then met with her for dinner. Shortly after that we discovered that she knew both Mike and his best friend Josh from high school. Lee quickly became a regular fixture in our lives and a few months later when she and Andrea started dating we naturally developed a routine of hanging out as couples once or twice a week. It was a wonderful time.

As Dad required more and more of my attention, though, getting together with friends became harder. Once or twice a week became once a week at best, then three times a month on a good month. Occasionally Lee has brought it up in conversations, "I miss hanging out the way we used to. It doesn't seem like we hang out as much anymore." I feel terrible when she says this; I miss hanging out, too, and long to go back to the old one or two times a week routine. The fact is, as long as my dad requires constant care, I am obligated to put him before my social life.  I am committed to a minimum of three nights a week: Monday, Wednesday, Friday. When I tell friends this it doesn't seem to stick and I am frequently told "Hey, we all want to get together this Friday for drinks. How's 7:00 for you?" As I feel my temper rising I hold back and say "Friday at 7:00 is never good, remember? Monday, Wednesday and Friday are always Dad nights." Often friends will respond, "Oh, that's okay, just join us later."  They don't understand. After a long day at work and a frustrating evening of my dad's looping I am not in a social mood. Actually I am probably the least fun person you could hang out with, sometimes I just want to punch something. Most of my life I would say I'm one of the most positive people you could ever meet. My dad's condition has put quite a damper on that part of my personality and, as I have no desire for my mood to effect my friends, I would much rather hang out when I have not just left dad's house. I have tried to communicate this but after a while my words are forgotten and friends ask again, "Why don't we hang out as much? Are we drifting apart. It seems like we never talk."

Three nights a week for Dad means limited time with my kids, so when I am invited to do some kind of "adult only" party, dinner or event I have a difficult time saying yes. If I accept an invitation to go out on Tuesday or Thursday, that leaves only one night to be at home for my kids if they need help with homework, a project or just want to spend time with me. One night is not enough to sufficiently fulfill my responsibilities as a mother. There are very real reasons I limit my kids exposure to my father which I will go into later. Much of the time I have turned into something I despise because of this illness: an absentee parent. Having any kind of a social life during the week means a tremendous amount of guilt....guilt about not having time to spend with my kids, guilt about leaving Mike to fly solo when it comes to weeknight parenting duties, guilt about not having enough free time for friends and guilt if I cut an evening with Dad short to attend to my other obligations. My ongoing schedule is an exercise in frustration and there is no end in sight. I resent the imposition of this disease on my life and the lives of my husband and children. I resent that my father, once the most intelligent man in the room, can barely follow a simple conversation. I resent Alzheimer's, not my father. I hate what this disease has done to the most amazing, larger then life dad anyone could ask for. Alzheimer's has robbed my family of so much. It's an endlessly cruel condition with a far reaching ripple effect.

Not the beginning...(part 1)

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)