Frances has mentioned several times (remember, she is 13) that she just wants to be “normal”. Yeah. So do I.
I don’t want to be consumed by Alzheimer’s Disease 24/7. I really don’t want to be constantly asking for and accepting help from so many. I don’t want to watch my husband, my soul mate, the one person who actually wants to put up with my shit turn into a shell of the man he once was. Sometimes I watch him and I feel so sorry for him. He has the outward demeanor at times of an 85 year old but without all the fun of having lived those productive and memorable years.
Watching him in the hospital last week was horrible. Just horrible. I know there are millions of people who have witnessed such pain and have felt such sorrow, but when you are there, in the moment, living and breathing the confusion and the depravity of this illness, it becomes REAL. Real beyond “knowing” what is coming. It was here. I was smack dab in the middle of a storm and I was not prepared or ready. I am not sure I will ever be ready.
Jim has bounced back to the point of being about at his baseline. Modern medicine really is amazing. To see him two weeks ago not even able to stay awake for longer than 5 minutes or to know where he was or who we were and now being able to stay home alone again is incredible. The biggest issue so far has been the disappearing dog food bowl that was found 24 hours later in the cat food bucket. But this snippet of what is to come made me realize that there really is no preparing for this.
It has been a rough ride all the way around. Rough on the kids. Rough on our friends. Rough on our family. Rough on me. Rough on Jim (I am going out on a limb here because he really doesn’t seem affected at this point.) I am aware enough to know that this same type of thing could happen over and over. I worry how it will affect the kids. How will it affect the desire of friends to drop everything to rescue us? How will it affect me? I can tell sometimes that I am immune to the situation and show little emotion at times that I should.
During all of this, I have realized how completely broken many aspects of our healthcare system are. You read articles about this, but when you are told that because your mentally impaired husband doesn’t have a physical ailment, he cannot qualify for home health aid or Medicare won’t continue to cover rehab and you can’t find any programs for someone his age (52) because he is too young. Well, I wish someone would tell his Younger Onset Alzheimer’s Disease that he is too young to have it. Wouldn’t that be nice?
So let me paint a picture for you: my husband has a mental disease that is not going to get better. We have two children, ages 10 and 13. I work full time. We are middle class. (which means we do not qualify for programs that are based on income) He is retired military and for those of you in the know…I have started the process of trying to qualify for Aid and Attendance (OMG, the paperwork, the waiting, the formula to try to figure out if we will qualify) It seems that each day I find out something else to worry about and then I must make a conscious decision on whether or not it is something I have control over and therefore something I can try to mentally and emotionally ignore. Jim is for all intents and purposes no longer a participating “Dad”. Before you get all upset about that statement, think about what a Dad does in the sense of the word and think about if someone in the early stages of dementia can do those things. Oh, and walk a mile in my shoes. Then you can say something. So, I am responsible for 3 other people besides myself. Plus the bills. Plus trying to keep up with laundry, housework, yardwork and meals. Plus my job. Plus the kids schedules and schoolwork (yes, I forgot to sign an agenda last night). Plus the myriad of things that any “normal” family faces each day. I have people tell me all the time they don’t know how I do it. I have come to realize that whatever we are each faced with at any given time is what we can do. For some, it is dealing with an ex that is dragging them through the courts again. For a few, it is figuring out which contractor to use for their new addition. For others, it is dealing with a teacher that seems to be treating their child unfairly. Whatever is causing stress, that is your thing at that point in your life. This doesn’t mean it will always be the only problem you have. We all have our own difficulties to endure. Thankfully, they come in a variety of sizes and at different times, which allows us to shelter our friends when their burdens are much worse than ours. Right now, my burden is making an impact unlike many deal with. But I can weather through with the help I receive. Someday, I hope, I will be on the other side and I will be offering shelter to a friend who will be needing refuge. In the meantime, I am struggling to find my way through all that seems to be coming at me at once. My priorities are changing. My focus has already changed. My determination and grit are still just as strong as before. Only now I don’t have my partner to help me. I do have unbelievable parents. I am surrounded by wonderful friends. I have two children who amaze me. They are not perfect by any stretch of the imagination, but my goodness, they sometimes step up in ways I never would have when I was their age. And it makes me humble and it makes me proud.
Yes, I want to be “normal” too. Whatever that is. A simple life with my biggest worry being what I am fixing for dinner or what we are doing that weekend.