Originally published May 3, 2013
Yes, I know it has been a bit since I posted and, well, there really isn’t any excuse. I did write a guest blog for my friend Stacey Brewer. It appeared on her site as part of Blogging from A to Z. It was a fun post and generated feedback for both of us. Other than that, life just got in the way a bit. That, of course, brings me to this post. One that it appears I must write or my head will not move on to other subjects.
As of this month it will have been two years since my husband and I visited Vancouver Island. For those of you who have read my book, Who I Am Yesterday, you will know that this was my “moment of awakening.” During our trip to the beautiful Canadian coast I was forced to realize that my husband would never be the same again; his dementia had become a full-blown reality.
Who I Am Yesterday is about my journey during the first year, more or less. I describe some of the things I have learned that work for us, for me. The book also draws out some of the feelings I had while I learned to deal with this changed lifestyle. I talk of how I conquered fear, sadness, frustration and a myriad of other emotions.
Those of you who visit my Alcove may have also read a blog or two or a poem or two which describe my continuing journey. It has not been easy and there are many times I wondered why I thought I could handle the many aspects of caring for someone whose world no longer resembled the reality most of us live in every day. Learning and internalizing that a person with dementia lives in a reality which changes with every passing minute is difficult. They do, however, experience their own reality. This, then, is what we will call an anniversary piece. When last I wrote on the subject I explained what I had learned about how the mind affected by dementia “sees.” In that piece, “Do you see what I see, do I see what you see, is it really there?” I explained some small part of how the brain works. Although I have had access to a great deal of the information for some time, this was a moment when it really sunk in. I somehow knew how he saw the things he did, even if I couldn’t. At the time I mentioned that I wasn’t sure if it would give me answers for him or solve the problem, but that it did help me develop a bit more patience.
As it turns out it really was an epiphany. This moment of insight lead to a point when so much of my frustration, anger and pain, well, released. I know this is true because I have learned not to cry. I still get emotional, my eyes will well up, I take deep breaths; but I don’t weep. There were, after all this time, still some conversations (confrontations) that would turn me into a total basket case. And now, well, they are just part of the day to day happenings that one must deal with. Here is the story.
There appears to be a high probability that my husband dealt with some form of schizophrenia most of his life. There were people that lived in his mind and nowhere else (or somewhere other than the present). However, now he no longer has the faculties to keep these mentally constructed worlds separate. As mentioned in my book, the walls in his mind are breaking down and he can no longer successfully tie a person to an event with any regular accuracy. Most notably me. When I began to internalize how he perceived the world and the people in it, I became far more tolerant of all these “extras” in our lives.
This is meaningful because now when he asks me where “he” or “she” or “they” went I come back with “You and I are the only ones here. I took you to the store, I cooked dinner, and I have been in the office all day…that was me.” He is confused, and I must repeat, but there is a difference. He appears far calmer than he was when I would get gradually more frustrated and finally declare that I didn’t care who they were. They didn’t belong here and I really didn’t care where they were now.
When you think about it, calmly explaining that things are as they should be and reassuring the individual that things are under control is far better than flying in a rage and screaming you have no idea who these people are, where they are or why they were here. Now, however many times it takes, I carefully explain who is here, was here and did what. Eventually he will quietly say, “I see.” 3…2…1 – “but where did he go?” And so we start again.
The next lesson was harder. Even more so because it was a lesson I had to learn earlier in life and seem destined, somehow, to repeat. It’s not my fault. There is a scene in Good Will Hunting when Sean Maguire (Robin Williams) tells Will Hunting (Matt Damon) a number of times, “It’s not your fault.” At the time Maguire is looking through Hunting’s case file which shows the abuse he received from an alcoholic father. “It’s not your fault.” I cried when I saw it; I too had to learn, “It’s not my fault.” Here I am again, learning the same lesson.
On occasion, when things would get intense between us and the agitation would build, he would declare he didn’t belong here, he would have to find somewhere to go. This conversation might have started for any number of reasons but it often escalated because I didn’t have the time, or sometimes wouldn’t take the time, to focus on whatever his issue of the moment might be. After repeating myself for a number of times I would run out of patience. Things would end with me walking out of the room announcing that he could let me know when he found someplace to stay. This is basically a kick in the teeth to someone who controls little or nothing in their own lives.
From his point of view, if things weren’t working he’d best move on. Logically I knew he did not have any way of locating a place or of getting there. There were even conversations with his eldest son about whether or not there was room for Dad in their home. Gently, it was explained, no there wasn’t. I usually tried to prepare my stepson for these conversations whenever I could. His unbelievable patience was always there reassuring, but firmly saying no. He helped keep things reasonably calm on a number of occasions.
I believe that another aspect of “this place” is his firm belief that there are all sorts of people that come and go. One night he had me in tears from giggling because he was turning the bedroom upside down looking for pillows for me. The ones on the bed were used by that other lady and he did not want me to be without. He had even arranged the pillows on the bed to leave room for me next to him. I found some pillows in a closet and let him know that if I got to bed and needed some, I knew where to find them. He was finally able to settle down and go to sleep. It was all I could do not to laugh out loud but I thought it was terribly sweet that he was concerned that all of his ladies had pillows. More importantly, if I saw that many people coming and going as they pleased, I guess I would want to move, too.
That, of course, was part of the key. I wasn’t the one he was running from. In fact, there were times when he made it clear he wanted me to come with him. He wanted to leave the ghosts in his mind behind. He wanted to find a place where he had more control. No, it was not my fault: and suddenly the sad tears went away.
There are still times when I have to get very firm and a bit agitated to get him to break off from a subject. Especially if there is absolutely nothing I can do at the moment or I am on the phone or trying to meet a deadline. There are times when I get the definite impression that I am not me; so I quietly separate myself and let him work through it. He is always glad to see me when I come “back.” I do not expect things to suddenly seem just fine. I do know that things are a lot less wearing on me and that does count in the dance of caregiving. It does, however, hurt far less because it is no longer personal. This is part of who he is now. I still have the moments when, near to tears himself, he tells me he loves me and doesn’t want to lose me. To the best of my ability I intend to make sure he doesn’t.