hospice

Shit? Meet Fan.


The cosmos just knows when you are burdened to the point of mental dizziness, loaded up like a wagon cart heading for the promised land which just happens to lie a couple thousand miles off – past the prairies, over the Rockies and across the desert. It also knows that the only thing you are likely to find is a junior wife position in the Lion’s House.

Things stack up. A little bit at a time, but eventually there is nowhere left to pile. Kind of like the inside of MIL#1’s double wide. An Oprah intervention in the making.

For the last week my younger brother, CB, has been calling to vent his spleen and general mental unhingedness on me. While I continue to feel quite badly for him, I am not unaware that he needs me more as a go between than as shoulder. He gets nowhere with our parents when he is in one of his “moods” and though it seems to me that he is no longer effing his life up on purpose, it is really effed up, and he is going to need some cash to start righting it. Cash, by the way, is not something that a 42 year old high school drop-out armed with just a GED and a couple of decades worth of working under the table contracting is going to be able to come up with easily in the economy today.

Because Dad has been ill and largely unable to hold up his end of a conversation, I have been reduced to leaning a bit on Mom. Have I ever mentioned that she is not a crisis manager? Pressure and Mom mix like oil and water.

I know I am heartless, but I believe that despite what they have given monetarily to CB in the past – they still owe him a bit more. The sum he needs to escape Marin and retreat to Tahoe to “get a grip” is pocket change to the parental units. My position is pay him. It will ease the situation for a while, and we could all use that.

However, another wrinkle – that sly universe again – came into play when Dad’s doctors hospitalized him yesterday. Pneumonia and fluid on a lung. Serious in an 81 year old man with pulmonary disease.

My conversation with CB yesterday went something like:

Me: Dad’s in the hospital. Mom will talk with him about the money when all the testing is over, and they know what is going on.

CB: Okay, so when do you think that will be? Because I need the money by the 1st.

Yeah, CB is a bit ego-centric, but as Rob reminded me – aren’t we all – in this life for ourselves kind of thing? Unless you are Mother Teresa that is. Oops, bad example. Or maybe an apt one because as self-less as we are all capable of being, what ultimately makes us happy, content or whatever, is having a life that is stable with people who care about – even love – us.

I googled the whole “fluid on the lung” thing last night then. It was not cheery.

  • infection
  • the beginnings of congestive heart failure
  • cancer

Dad’s lung doctor doesn’t think it has anything to do with his existing lung issues or the pneumonia. This leaves us with two ugly scenarios.

Mom called me after they siphoned off two litres of bloody fluid. She told me – without my bringing up the subject – that she simply could not deal with CB or his request. To which I replied,

“So just send him the check then.”

Because the way I see it, she will worry and feel bad if she doesn’t, and since money isn’t an issue for her – why not use it to buy a little peace and happiness for herself and CB?

And me. Let’s not forget about me in all this.

Later in the afternoon, DNOS calls and tells me not to bring up CB again.

“I didn’t,” I tell her. “Mom brought it up.”

“Oh.” Clearly she had wanted to be bossy and now couldn’t, “Well, Mom had one of her freak-out’s about it.”

I go on to explain my theory and plan. DNOS reluctantly gets on board and agrees to make sure that the money goes out this week and then says,

“I really don’t care about CB anymore. I would be upset if he…expired…but I just don’t care about him.”

And I get that. I have a list of people I should care about more than I do too.

My gut tells me I need to be prepared to hop on a plane and go soon. I know I will have to go without Rob. He and BabyD will remain here until Dad dies. I will have to do the hospice thing again on my own and being the rock and go-to on top of it. I don’t know if I am up to this or not, but life doesn’t need our permission for anything it decides to do. There is no point looking for a whale belly to ride out the storm.

Bad timing and life. Go figure.

The Pilgrim’s Hospice


There are no free-standing hospices in the Edmonton area. I was a bit surprised by this because there are three and a fourth under construction back in Des Moines. Hospice care is in home here. Rob’s late wife, Shelley, received hospice in the house where we live. The Pilgrim’s Hospice trains volunteers, offers limited day time respite and runs a variety of bereavement programs. One the programs they offer is a creative arts group for children between 3 and 18 years of age. They have the children split into three different age groups and they meet to discuss their losses and feelings through song and art projects. The program even offers day camps over the summer months when Canadians typically don’t have any type of programs for kids at all because they are quite serious about their vacationing and family time. This last November, Katy was having some difficulties again and Rob and I decided to look into options for her and came up with this program. We realize this is going to be an on-going process for her because her perception of her dad and his death will change as she grows and her ability to understand and process matures. It’s ironic. One of the things that adults envy about children in the grief process is their seeming ability to grieve in short bursts rather than carry it around morning, noon and night, but the downside is that they will be burdened with reprocessing their parent’s death at every milestone along the way to adulthood and beyond.

While the children gather for their program, the adults meet in another room to do roughly the same thing the kids are doing minus the singing and paints. I think I might like to discuss my grief journey over a coloring book though or while making cookies or learning to dance. Somehow that doesn’t seem as daunting. The group is mixed. We were not all widowed though about half were. Others had lost small children or their own parents or grandparents. As I listened to one person describe losing a parent and grandparent with such visible distress I thought back to the numerous posts on the widow board where other widows would rant rabidly about the fact that this kind of loss is not equal to the loss of a spouse. Even Rob mentioned later that he couldn’t work up too much empathy for the person, and truthfully I couldn’t either, but I did feel sad for this person who obviously needed this lost parent so much that it was debilitating for them. A person expects their parents to die before them but our level of dependence on them varies so much from one of us to the next that I can easily see how someone whose adult life was integrally wrapped up in a parent’s could be as bereft as someone who losses a spouse. It’s very sad in another kind of way. The parents who lost children are the only grief victims that widows seem to be accepting of and often allow to trump their own grief cards. Rightly so, in my opinion. I was reading a blog entry the other day by a young woman who tragically lost her little girl over the summer and I just sat and bawled as I did so. The thought of losing Katy seizes me from time to time and it freezes my soul. I have an old friend in Iowa who is observing the sixth anniversary of the loss of her three year old later this month. He was murdered by her now ex-husband. I marvel still at how she carried on and put her life back together. Whenever I felt sorry for myself while Will was sick or after he died, I thought about her and kicked myself in the butt to do better.

The widows in the group last night were not as far out as Rob or I. Not even a year. Sudden deaths and they were grappling with the acceptance. There is a huge difference – a gulf maybe – between sudden widows and those of us who knew or had an inkling that it was coming. We don’t tend to wrestle with disbelief as much as mourn for the lost time. Time lost to the illness. Time in the future that won’t be. It is hard to listen to fresh grief. To see it. There is that look in the eyes. A tenseness to their frames, almost a full body clench. One widow talked about still not being able to sleep. I didn’t realize myself just how much I needed sleep until I was able to sleep again like a normal person does. During the three years leading up to Will’s death, I lived and breathed sleep debt, getting by on as little as three or four hours a night at times. One or two late nights now and I am near collapse. My body simply refuses to let me run a debt of any kind now. Smart body. The anger too is palpable in the freshly minted. I recoil even more from it now than I did during my time on the widow board though I had my anger then too. Anger is exhausting. After the meeting I felt compelled to speak to one widow whose first year is up just a few days after the coming second anniversary for Will. She asked if it gets better. And the answer is not that simple. It gets better only in that it begins to change. I could tell she was disappointed by that. I didn’t tell her that it never goes away and that she will carry it in some form or another always. I think she assumed because I was there with Rob that I was all better now. Everyone thinks that. I am certainly happy again. I am building a life with Rob that I love and I am so wonderfully blessed by his love and by the new family he has brought Katy and I into, but it doesn’t change the past in anyway. It transforms our now and our future.

The woman who lead our group got into grief counseling after losing her tow youngest children at birth. She felt better by giving back and eventually back a counselor. It was an interesting thing that I can relate to. I always felt good being able to share with newer widowed people on the YWBB. I was sad and a little angry when I had to leave there, but I knew I had to give that up – at least in that setting – because of the personal attacks I had experienced at fingertips of a few widowed who did not see me as a good example or as being someone who had anything of import to say about grief and the journey we were all on. Granted, I could be pointed – though I saved that for those of my own or greater vintage, but last night I thought perhaps I had found a new outlet for my still abiding need to share my experience and journey. Something I am going to give much thought to in the coming months. I knew after Will died that I someday would give back in the hospice. I am not quite ready to volunteer in that setting though. I am still a bit too raw. Maybe this type of group setting is more my answer.

What Death Really Looks Like


I went and saw the movie The Prestige last night with a friend. There is a scene early on in the film where Hugh Jackman’s character watches his wife drown in a water tank during an escape trick gone bad. As the scene went on I could feel the balls of my feet bracing against the floor and pushing me back in me seat. My arms drew up into a x across my chest and my hands covered my mouth. I could feel my friend’s concern as the scene progressed and Jackman’s character tried to first revive the wife and then dissolved into disbelief and tears. After the scene had passed I relaxed and slumped a bit in my seat.

There were other uncomfortable scenes but this one stayed with me. It reminded me of watching my husband die. It did so because of the terror of both the husband and the wife. I was so afraid of being with Will when he died and equally terrified that I would not be there.

The hospice workers tell you exactly what to expect. Even as his body began to cool, extremities first, and his skin mottle from lack of oxygen, behind the back of the knees is where it starts, I was still not prepared for the last minutes.

His arms and legs had contracted with each stage of his illness. He was so spastic that his arms and legs refused to bend at all by the end. As he slowly lost that last battle with pneumonia, they relaxed and unfurled. I had forgotten how tall he actually was until I came back that evening to stay the night with him and found him completely relaxed with arms and legs straight and loose.

The breathing begins to be less obviously labored and slows. The urine output is negligible and bubbly. As the strength required to draw breath in wanes, the chest stops its rise and fall and the effort shifts to the diaphragm. The nurse on duty that night pointed it out to me. I asked if it meant that he was going to die soon, but she told me that this was unlikely and this could go on for most of the night though she was sure he would not still be struggling so when morning arrived.

He looked waxen and even less like the man I married than usual. I was alone with him when I noticed the odd way he was gulping. Like a fish when it is lying on a dry surface. It seemed almost as if he was using his tongue to pull the air into his mouth and force it down his lungs. I watched for a minute, maybe two more. His head now hung limp and he was facing me with glazed eyes.

I hit the call button. The aide took forever, though really a couple of minutes, to arrive. I pointed to him, asked if that was normal. She didn’t know. New? I don’t know. I never saw her again. She went for the duty nurse. By the time she arrived I was sitting on the bed holding his hand with my other placed on his chest.

“Is this it?” I asked.

“I didn’t think it would happen this soon,” was the reply.

“Tell him it’s all right to go,” she told me.

I could feel his heart speed up, an uncountable number of beats. I repeated what I had been told. I told him I loved him.

Suddenly everything is moving very fast. The worst was watching him try to breathe frantically through his mouth. Trying to bring air to lungs that were still. There was no sound. I am grateful still for that. I can block out the image when it pops up but know that I would be defenseless against sounds.

And then it was done. A deep sigh. His head hung limply, eyes half open. I felt the heart beat just a few seconds longer. Then he wasn’t there anymore.

I just cried. I would rather endure just about anything other than to cry in front of someone else but I didn’t even notice that the nurse was still there until she came around the bed and sat down behind me and gave me a hug. Then she left me alone. And I was alone. He wasn’t there. I wanted to believe that he was still in the room with me and finally able to understand what I was saying to him but I am not so sure. I didn’t feel him at all and I would know him anywhere. I stopped crying almost as quickly as I began and didn’t cry again for nearly a week.

This feeling of disconnected numbness settles in and it stays for quite a while. I still sometimes feel so removed from myself and my actions that it is like watching a movie. I can do such dumb, self-destructive things then.

I avoid movies and television for the most part anymore just because of what happened last night. It’s not real and doesn’t even look real because I know what death really looks like, but it’s enough like reality to pull me back.

And I want out.