I'm struggling with my every day role, or should I say roles, in my life now that for the most part things are back to normal. Though I'm a wife, it's not in any typical sense anymore - not a partnership - so I'm trying to work that out. And though I'm a mother, it's different with grown children and not a daily role. And I'm a sister, but after months of dependence on my sisters and brothers to make it through the days, weeks, months, that is not the main headliner these days. The active role of daughter has been retired. Yet "orphan" doesn't quite fit. I work forty hours a week, but that role has changed over the last several years after a merger, and has changed significantly over the last six months, so I'm still figuring that one out. In my 30 years there, I climbed the ladder from the bottom to the top, and now I'm going down the other side - by choice, at least I think it was my choice! - giving up any leadership role or supervisory role in order to allow more energy for the rest of my life roles. I guess I think my starring role right now is caregiver.
I'm back to focusing on my husband and his disease. Starting to research again. We are coming up on a year in July since his first visit to his neurologist and in August, his diagnosis. After living with this knowledge for almost a year, I find myself wondering what to do now. Dave doesn't need care in the typical way. His daily living skills are in tact. The "symptoms" taken one by one are not uncommon among many people, and sometimes I find myself second guessing his diagnosis. Maybe he's fine and just getting old. Maybe there is no reason for concern. Maybe his brain had atrophy a long time ago and has just been holding for along time and will continue to do so. His decline has seemed slow. But as I have more time to spend with him and observe him, I know there's something missing, a part of him is gone. Or maybe it's that he seems to be in his own very small world and he doesn't "need" us to be satisfied with his life. I just don't get it. It is so frustrating that he would be "happy" with how things are - watching game shows all day; no significant interaction or conversation with others, including me. No depth to his life. But maybe that's my problem - not his. Maybe it's me reflecting on things that are missing from MY life - I don't get to sit and watch tv all day; I don't have significant interaction with him. I don't feel a depth to our relationship. So it's missing for me - but not for him. I don't know.
Over the 4th of July, we went to the parade and sat with family and friends, and later went to a block party at a neighbor's. There was a beautiful little girl - 7 months old - that he was commenting on - and then he said he doesn't remember when our children were that small. That stabs at my heart, brings tears to my eyes. I know it's a filing problem in his brain - if I find the right prompt or trigger - or some pictures - he'll be able to find the memories - it's not that they are gone - just misfiled. I need to get all our photos in photo albums so he can look through them and find those memories. That's the kind of care I need to provide. In conversation with some new neighbors, Dave was talking Spanish, trying to clarify who lives in which house - in my mind, he seemed a little eccentric, a little loud, a little over the top. And when he left the gathering, for some reason, I felt the need to explain to these new neighbors that he has a degenerative brain disease. One gentleman said no need to explain, Dave was perfectly charming. But what I witnessed was their chuckles at some things Dave said, some comments that somehow pricked me. In thinking back, if I wasn't aware that Dave had a disease, if I hadn't known him for 38 years and how he used to be, maybe I wouldn't have felt he was odd. I guess I was embarrassed. And that is sad. One of the gentleman made the comment that it was a good thing Dave had me along, because he was constantly having me fill in the parts of conversations he wasn't sure of - like how many years we've lived in our house, how many years we've been married, how long since he worked, when we moved here, what I do for work, etc. That's not so unusual, right? It is more the way he says it. Another gentleman commented it was like watching a comedy show - they were not being unkind or anything like that. I just took it that way. A little sensitive, I guess. I guess one of the awful things about the disease is right now there is no obvious symptoms, like an arm missing, or a hole in his head, or whatever. The whole issue right now for me is that he's not the man he used to be. So much of the depth that made him who he was seems to be gone. Yes, he is still a kind gentle man. But a lot of him is missing. Or I'm missing those parts of him that aren't evident any more. But that's normal, right?? People change. I don't know. Maybe it is all just normal progression of aging. Not.
I guess I just wait. And watch. And wonder what's to come. Part of me wishes things would move along, so I would have validation of the diagnosis, validation of progression. Why would I want that? Part of me wishes I didn't know about this diagnosis. Have I given up hope? Am I expecting less of him, and in return getting less?
In my heart, I know he has this disease. I know the information I read about the behavioral variant type of Frontotemporal Degeneration fits so amazingly to his symptoms, it must be true. But I don't know what to do for him - and I miss him - the full person. It brings to mind our wedding vows - I take you to be my husband, loving you now and always. I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed in you. I promise to be open and honest with you always, and share your dreams and ambitions and help you to fulfil them. I make this commitment of love, faith, and hope, believing that God is in the midst of it all. Nothing about "in sickness and in health" stuck in there, but the commitment is there. The sickness right now has resulted in no dreams or ambitions - he just doesn't have any. Life is not really peaceful, but it isn't in disorder. How can I be disappointed in him? This isn't his fault. This whole middle ground - this neutral territory - this waiting - I am not certain what to do with it. I'm rambling. I need to be thankful for each day, and thankful that he is maintaining and stable.
As far as my everyday life - I'm feeling less unbalanced - much lighter. Making a quilt for my first grandchild, due in a couple of weeks. Doing some things I enjoy. Laughing more. That is feeling good. I need to keep moving forward while I can - do some things for myself - and not feel guilty about that. It will make me a better caregiver. Ugh - I don't like that word - caregiver - that seems one role I'm not certain I can manage.
