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.
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