Category Archives: Caregiving

Finally the tears have come…

I went to see the film: THE THEORY OF EVERYTHING this afternoon and thank goodness I decided to go by myself. Who knew that I would be so affected by this story (although in hindsight I guess it might be obvious)? The film is the story of Stephen Hawking–the brilliant scientist who developed ALS (Lou Gehrig disease) early in life–and his incredible wife, Jane. There were so many moments that touched me and reminded me of the years that L was ill and all that he was forced to abandon as his health worsened. The scenes of Jane’s exhaustion and struggles to keep the fight going brought back painful memories of those times when I faltered and just wanted our life back to the way it had been. Hawking’s humor was SO reminiscent of L’s–the one thing everyone mentions when they speak of L is his laugh and how it lit up a room.

There were so many lines in the script that touched me in places both painful and sweet. One of those lines is delivered by a man who comes into their lives having suffered the death of his wife…the line is something about “the tyranny of the empty room.” Is that not IT? The loneliness that waits just behind the door no matter how busy you are?

I have mentioned to some of you that I don’t feel I have cried enough. I have long felt that my true feelings about L’s last days and his death have been walled up behind a dam that seemed to hold. Well, this afternoon that dam cracked and it was a moment that I recognized immediately as not only healthy but absolutely necessary.  And so I cried and cried and cried–so much so that as the lights came up I found it necessary to allow the entire rest of the audience to leave (under the pretense of watching the credits) before I could trust myself to stand up and leave. I know that this is a key step forward and the fact that it has come two and a half years after his death is neither here nor there–the point is the dam will not hold forever. And in the flood of those pent-up emotions comes spilling forth the anger and the regret and the fear of not having done enough–of not having taken full advantage of the time we had. But hindsight is, of course, twenty/twenty and as I cull through the memories of our years together this I know for sure (as Oprah would say): I loved and was loved in return and it is that shared love that no dam can hold and no death can silence.

5/7/12: Is this what it will look like?

When I left this morning for a dental check-up all was what passes for normal these days. L was at b’fast, reading his paper, phone nearby for the first calls of the day. I kissed his forehead and we wished each other a good day. After the appt. I went to work at my studio and then grocery shopping. I came home and L was in his recliner with the TV on and tuned to the businbess channel he often watches in the day. He was dosing–not usual but also not unusual. I left him alone as the oxygen  delivery arrived and there were friend who regularly call in the afternoon. But every time I checked on him he was still dosing. Suppertime came and went and he didn;t want anything. He did not want me to call hospice but finally agreed. I walk a fine line between making sure that things are the way he wants them to be and need to make sure that I am doing what I can. Finally he agreed that I could call hospice. Two nurses came out–checked his vitals and gave hinm morphine and a gel for nausea/pain. His BP was high but his lungs were clear. They offered in-patient hospice as an option. I am holding it in reserve for the moment. My idea was to call friends to come over to help me get him to/from portable toilet and then I remembered a letter we got from a neighbor who does CNA work. I thought perhaps I could call her and have her come but he says he doesn’t want that. We haven’t yet discussed the idea of one or two of the friends coming.  What’s the right thing to do???? I feel as if he’s taken this sharp turn and is slipping away from me. I want to sit by him and hold him–or at least hold hius hand but he doesn’t want that. So hard–so scary. So very very terrifying.

4/19/12: Every week…

…the hospice nurse comes. We look forward to her visits for all sorts of reasons. First of all she is an interesting woman with a sense of humor that is a good match for L’s teasing. She has quickly become someone we trust to honestly answer our questions and troubleshoot any problems we may be having. This week she alerted us to the fact that we are coming to the end of the first certification period meaning she will need to show reason why L should continue on hospice. I have to bluntly say that the first thought that ran through my mind was that apparently the powers that be have set a time limit on how long it should take a person to die. But I do get it that–as with any system–there can be abuses.  Still it was upsetting to realize that we might lose this support that has become so important in our lives. There is no question that L is failing albeit by small sometimes hard to measure increments. And frankly sometimes the reason I look forward to the nurse’s weekly visit is because L will explain what he’s experiencing in greater detail than he will say to me or others. Like today he spoke about how this morning brushing his teeth, etc. he became so weak–even with oxygen–that he wasn’t sure he was going to finish before he had to sit down. After the nurse left I got out a shower stool we had in storage (there’s already a built-in seat in the shower he uses) and set it against the wall just opposite the bathroom sink. That way he’ll have something to sit on should this kind of weakness continue–which obviously it will. So another small concession to this thing that is slowly killing him. And so it goes…week to week….

Monday, January 23: Imagining “after”…

I’ve been blessed to see the same therapist for a number of years now. He has helped me through any number of challenging times but none more challenging than the journey I am on now. In our last couple of sessions I have talked about two things that even to say them out loud was difficult: how long will this go on and what will my future look like.

Okay believe me I get it that this sounds incredibly self-centered. I am not the person dying here. So to even entertain thoughts of what I might do or where I might go once this journey is over–plain talk: once L dies–leaves me rife with guilt that is nearly paralyzing. But as “Doc” pointed out this is not about wishing for an end–it’s about figuring out how I will survive once it happens. Having never been a person who lives in the moment I get that. My whole life I have operated on how I will handle whatever challenge may come along–I did that when L first became ill; I did that when it became clear that our activity would be severely limited by his illness and frailty; I did that when I understood that if you get to the path you thought you would take and find the bridge out, then you find another way.

The second area of discussion–how long will this go on (with “this” being the fact of L’s dying) is tougher. I want L here with me as long as possible but I cannot help but think about how long that might be…and more to the point what I will do then. In some ways the two discussions are opposite sides of the same coin I suppose–each involves planning a life w/out L as a part of it and each involves overwhelming feelings of guilt, fear and anxiety.

Here’s the good news: L may be no longer physically here but as Doc pointed out L has been such a factor in my life–more so than anyone else–that the very idea that I will go on w/out him is ludicrous. Through our years together we have shared so much, taught each other so much, been counselor, cheerleader and constant friend for each other and death cannot erase that. In my heart of hearts I know that L will be with me and more to the point he is here now in every way that counts. I just have to stop living so much in the future land of fear and worry and remember to live in the NOW.

January 15…Sunday…Welcome to Normal

While life in our world is surreal at best, today was a fairly normal day.

We’re in Wisconsin and it’s January and there’s snow on the ground and crisp cold sunny blue skies above. It’s play-off time in the NFL so football was definitely on the agenda for the day. His sister came to watch the game and have supper with us. We laughed together and bemoaned the loss by our team. Later we read the paper and watched the Golden Globes–all so very normal. And yet…

Is it odd that these days when L tells me he’s going to take a shower  I linger nearby afraid he might fall?

Is it odd that we rarely go out to see friends or have dinner or go to a film or play but rather people come here and our lifelines to the outside world are those visits, phone calls and our television?

Is it odd that four times a day I prepare his breathing treatment and several times a day I straighten out the kinks in his oxygen tubing?

Is it odd that I never leave the house without having  his DNR papers close at hand in case something happens while I’m gone and I need them when I rush back or to the ER?

Is it odd that for the last several months L has slept in his recliner to help his breathing while I lie in the bed we have shared for over forty years and listen to the steady murmur of his oxygen machine?

Is it odd that every night I fall asleep thinking how horrible it will be when that machine is silenced?