It has been a long, long couple of months. Life goes on. My father passed away April 10 at home. We had a wonderful service for him with bag pipes, family all together, lots of grandchildren and great-grandchildren, military honors. Best of all, there was a letter to us all - at least that's what it felt like. My next to youngest brother came across a letter my dad had written to him when he was away at his first year of college, and he had one of his daughters read it at the funeral service. It was as if it was to all of us. It revealed to me a more honest and thoughtful side of my dad that was touching. It was one of those letters we all want to write to our children about life, about mistakes we made and about our children doing better - being better - then we are. A perfect gift for all of us.
Today a young couple moved into my dad's house! I can see lights in the window - I can imagine the excitement of the first home - painting, planning, decorating - new life. It makes me smile. And it feels like life might get back to normal now. The last eight weeks have been a whirlwind to work with my father's second wife in getting his affairs wrapped up, clearing out my dad's house, dividing up belongings in a "fair" way between eleven siblings - and I'm not done yet! But getting there.
Back to normal - which means having more time - more time to dwell on my husband's disease and begin to wonder all over again what's in store for us. He had a follow up CT scan a couple of weeks ago. His subdural hematoma has reduced in size 80%. So we have a follow up CT in six months, and hopefully the last 20% will have been absorbed and things will look back to "normal". I guess one advantage to these CT scans is to be able to see if more atrophy has occurred. How bizarre. I would have never expected to be wondering about these things a year ago. In August, we'll be coming up on one year since diagnosis. He had another driving evaluation two weeks ago at the six month point since his seizures after his fall in November. He did ok. It was with reservation that he can drive again. He is not to drive at night, or on the highway. And he must be supervised for several weeks before he can drive on his own. So we're working on that. I'm not certain how I'll feel about him driving again alone. There is a part of me that can't wait til he can drive himself to the senior center about a mile away for his daily exercise, or to the grocery store about a mile away to pick up some things he needs or notices we're running low on. Since I've been back to work for a couple of months, most days I get a phone call or two from Dave, letting me know we need something from the store - and when I get home from work, first thing I'm asked is when we might go to the grocery store. And I'm asked repeatedly until we go. Unfortunately I am having a hard time answering that same question everyday in a patient way. At the same time, I need to step back and judge if I really think he is capable of driving safely. It is not a matter of him getting lost. That is not a problem, at least for now. It is more being able to judge distance, turns, parking - making sure til he's used to driving again that he doesn't adjust the radio station, or the mirrors or the windows. It is tough. AND NO FAIR!
What is fair? Not a lot. I struggled a lot with what was "fair" in dividing up my father's household property. And what is "fair" is actually so subjective! I often feel my life isn't fair - my "normal" isn't fair - and yet, I wouldn't trade places with anyone I know, because while their lives may seem less complicated, I don't want their concerns or troubles. The concept of "fairness" seems overrated. A lot of life is luck - and I feel we are all lucky at different times and in different situations - and when we're lucky, it probably appears unfair to others! And if we're REALLY lucky, we are blessed with a temperament that doesn't stress over what is fair! Sometimes lately I've felt like I'm in a competition for "who has the saddest life story?"! I definitely don't - but when mired in daily life - in adjusting to my "normal" again, I've thrown a few too many pity parties for myself. It is amazing how healing it can be to stop and breathe - to clear my mind of stressors about work, my husband, my children - to not sweat the small stuff, to not worry about things I can not change. I am hoping with practice and daily commitment to take a few minutes to breathe that I will re-balance my perspective and get back to being a positive productive person and uplifting of others. Because when I get right down to it, I am blessed with many things in my life - I have more then my fair share of blessings!
Each person's challenges - demons - burdens - are unique - we all have them. I share my feelings here to help myself, but mostly to touch someone else who may be struggling with similar issues - or similar pain - I somehow feel I must choose words carefully - like using the word "issue" instead of the word "pain". Reality is my life is painful at times - I can't pretend it's not. I can't wish it away. I can't deny it. But accepting it, owning it, putting it in perspective, and finding the time to enjoy life and take care of myself so I can face the challenge is what I need to do to get by. Like we are all doing! And in contrast, my blessings are many, so many - and a grandchild in the next month! Somehow I seem wired to get caught up in the negative things - so it will be purposeful on my part to concentrate on the positive. My husband doesn't have to worry about all this - his FTD successfully seems to blunt any feelings of inadequacy, inability, concern and worry over the future. I am not so blessed in that regard! But I'm learning to not dwell on it all.
In July, it will be one year since my son's wedding celebration, one year since we first saw Dr. Bruns and had Dave's first MRI. In August - one year since we got some answers and came up with more questions. I'm interested in returning my focus to raising awareness of Frontotemporal Degeneration, working on a plan for the future, seeing where this journey takes us. Looking forward to what the next year brings.
