I have had some very good visits lately with Janis.
Here’s the thing: Everything about this disease is rich in trickery, deception, confusion. For instance. I have had some very good visits lately with Janis. This means, the visits went well. Very little angst, crying, pleadings to go home, less toileting problems, etc. I find this easy. Quieter. Less stressful. More opportunities to hug, kiss, hold hands…
But what does this really mean? Of course we all experience good days and bad. She is entitled to have bad days as well as some really good days, without me reading too much into it. But the real truth is, I see decline. I see her slip a little further away. So when I’m alone I face the truth. The easy visits mean less Janis.
Nevertheless, if I accept this it is a way to use these easier visits to provide her with more affection, closeness, and a patient acceptance, that calms her as well as me. The simple act of just holding her is a powerful, tender comfort for us both. This is important because she is still very tuned into my demeanor. In the middle of one recent teary episode (both of us), she recovered long enough to put a hand on my face and said, “Are you okay?” She does this now and then when I lose it, and it helps me to pull together, so I tell her, “Yes. I’m okay. You helped me. Thank you.” We kiss. She smiles. It amazes me how the emotion brings us together, just when it seems to be slipping away. (I speculate that for her it has something to do with adrenaline during the stress of emotional upset. But that’s me always trying to read more into what I’m seeing.) It doesn’t last long, but in the moment it is extremely touching for her to be so concerned for my well-being. And I accept it for what it is. And I’m grateful for it.
The most important lessons I have learned over the past two years is that denial is powerful, acceptance takes time…lots of time, and acceptance is not abrupt, it’s not a light switch. It’s about letting go. It’s a gradual process that I’m still working on. I’m not letting go of Janis, I’m letting go of our lives together. There was supposed to be so much more. When visiting her and she’s sleeping, I find myself watching the unit and the other residents whom I’ve come to know by name and personality. I speak with them. I assist them in small ways. I watch staff interact with residents with genuine compassion. I laugh with residents when they are having a moment of levity. I have come to know and respect the compassionate staff: the nurses, CNA’s, the physicians and practitioners, the Aides, the housekeepers, the dining staff. I’ve met other spouses and family who visit with their folks. (We chat, but keep it brief. We know what our purpose is and who gets our time.) But, especially the residents. I have mourned when some have passed on…I miss them…they all have become a part of Janis’s world and mine. How much our lives have changed.
At times, when I’m more able to be philosophical about all this and less emotional, I understand that life is about letting go. Letting go of things like a breath, a day, a pet, letting go of ideas, plans, letting go of property/things, and letting go of the people we love.
I am working (part time) more this summer, the busiest season of the year at the museum. And I babysit my grandchildren twice a week. This has forced me to let go of some of the time I have used visiting Janis. (This is good for me. Children have a way of bringing us right into the moment and keeping us there.) But, not by much because I need the visits. It’s hard to let go. I have shaved an hour off from some of my visits. Down to 3 hours per visit. And I have tried to go to three visits a week which is especially difficult to adjust to, because it usually means that I’m gone 2 consecutive days per week. I find that is about the limit. I did take a small break this summer, one to my daughter’s in Virginia for 2 days and another on a 2 day camping trip with my son. By the second day, I begin to get antsy, I need my Janis-fix. But visits are very important. I am extremely conscious of time these days. It is finite. One thing about getting older is that truth about finite time becomes reality, and I have no idea how much time Janis and I have left for each other.
“The only constant in life is change.” Buddha
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