Monthly Archives: January 2012

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.

Comes most often at various times throughout the day–who will take care of me? We have no children; friends can only do so much; family is far away and limited.

Comes while cooking–of which I am doing more these days simply because I am here and we are not able to go out as we did–what will meals alone be like?

Comes after running errands or being out for some other reason–what will it feel like to come home to…silence?

January 19–Making room for more medical equipment…

One thing we have lived with for years now is the presence of multiple medications–on the bathroom sink counter, filling much of the space on the kitchen table, etc. Since coming home from the hospital in December we have added an oxygen compressor that runs 24/7, a nebulizer used every four hours throughout the day to administer the drug Albuterol, and most recently a machine used often by people suffering from sleep apnea to administer a higher level of oxygen for at least four hours a day. On Monday we will be getting a transport wheelchair (and we already have a shower stool and portable toilet). And the weird part of it is that while I would sometimes become impatient or annoyed with the way our house seemed always to be dominated by meds and such–now all I can think is “Bring it on–whatever will help–whatever will give us one more day or week or month.”
Our home care nurse made her weekly visit today. With things pretty status quo for a few weeks now I found myself asking her what it would look like when we would know we were beginning the downhill slide. She gave me some signs–L sleeping more, limited appetite, perhaps a lung infection of some sort.. I don’t know why I asked the question except that because things do seem to be stabilized I find myself slipping back into that old denial stage and thinking maybe things will get better after all. But just now a friend called and I went to hand L the phone and heard him say that he was ‘having a rough afternoon’–evident in the way his spirits seem dampened and his breathing seems more restricted and I know that it will not get better–only worse. All the more reason to cherish the good days–the good parts of days.

January 17–Snow Day

To add to an already surreal world that we are living in, we awoke to a swirling snow that looked like we were trapped inside one of those shake-em-up snow globes for most of the morning. Good day to stay in.
Thoughts…
A friend called from Florida to say he was planning to come for a visit this weekend–people are trying to understand the urgency of the situation and its hard to discourage them from coming in spite of the weather. The truth is that for now we seem to be in a positive holding pattern–making it even more difficult to accept that this will change and not for the better.

Yesterday we watched our college basketball team’s game on TV–for forty years we went to scrimmages and games in person. Our first real date was to a scrimmage in a musty old gym on the urban campus. This team has always been very special to us even though neither of us went to school there. So many wonderful memories tied to games and tournaments and kidding around with rival fans.

The snow also brings back a ton of memories–the first time that L tried to take me ice skating and my phobia related to falling would not allow me to let go and enjoy. The time we went walking on the frozen river near our house. The walks we took in the snow at night. Shoveling the long narrow driveway at our first house when the snow came so often that we ran out of places to put it. Crazy hats and sweaters that L bought for me in an attempt to stop my complaints about always being cold…

So many wonderful memories to warm us in these dark cold days of the winter we are facing in our lives 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?

The journey begins…

Late in 2011, my husband and I learned that we were coming to the end of one long journey and beginning another far more challenging one.

For years his pulmonary hypertension (and assorted other health issues) had been managed through a combination of medicine, therapies and his own indomitable spirit and will to keep going. We suddenly found ourselves in a whole new place where the locals spoke  in terms of ‘palliative care,’ hospice, and ‘comfort care.’   We have no GPS for this journey. We have no timeline or schedule–weeks? months? years? We do know the inevitable end of the road–for us as a couple, for my husband and for me.

Much has been written after the fact by those suffering the loss of a spouse or life partner. As a writer by profession I felt the need to record the journey as it happened. I doubt that I will always be a sympathetic character/voice in all of this–after all I am not the one facing the end of MY life. I suspect there will be times when I will indulge in self-pity and when anyone reading this will have the urge to shake me hard, but I will not sugarcoat this.

My goal is simple–to document the journey however long it lasts–and perhaps along the way to offer hope and empathy for others  (and gain wisdom from them) as we travel this same difficult road.