Love You……

 A few weeks ago, I shared a post on Facebook. It had to do with missing people when they’re gone. I commented “… and I do miss him”. A former co-worker emailed me, sounding quite distressed that I seemed sad. What was going on? I explained to her that it was a rough year and that K had passed away only a few weeks ago. I thought it was quite appropriate for me to be sad and I was doing alright. She replied that she hadn’t known of K’s passing and extended her condolences. Then I noticed, beneath the post that had caused the fuss, she had posted, “… I love you”. I can not express how much this simple message lifted my spirits.

 One of the things I miss most about K, is that he never let a day go by without saying I love you. I remember one evening when K dropped me off at work for the night shift, I was in a foul mood. I don’t remember what the argument was about, or what heinous atrocity he had committed, But I left the car without saying “love you”. It was one of the worst nights of my life and I told K so the next day.

 Over the past year and a half, I have received the most wonderful support from friends and family. Many times I have heard the words, “I love you”. They never cease to lift my spirits. I am sure that science has some wonderful explanation, involving serotonin receptors and whatever. It doesn’t matter. It is what it is, simply wonderful.

Life Beyond…..

 

  There comes a point in this journey, when things become too real. It’s during that time that it becomes too painful to write. Perhaps a better writer than myself could channel that pain and turn it into something great. Not me. In fact, there was a point when I thought I may never write another chapter in this blog. It was too personal.

  That long dreaded day has now come and passed. It was rough, much harder than I would have ever imagined. It’s an experience I don’t recommend. If you can get past the deep seated guilt that comes from having failed your loved one, then just be present.

  There was so much I didn’t understand about the process of dying. During the final two weeks, I would spend hours sitting with him, talking to him and helping with his care. My questions were now being met with a nod or a dismissive shrug. He no longer greeted me with his usual happy greeting, “Hey there you are”.  I could accept that the tumor was preventing him from talking to me, but then one of his favorite staff people would enter the room and speak to him.  He would look at them, suddenly his face would brighten up and he would say “Oh hi there”.  I would tell them that he wasn’t talking to me at all. Some of them thought I was joking. One nurse asked if I was being silly, I assured her I wasn’t.  All of them thought I had been given the pamphlet about what to expect. I hadn’t. If I had, I would have known that dying takes energy. As his body dealt with all the changes that took place, it was normal for him to distance himself from his loved ones.

  One afternoon, I sat with him as he slept. He moaned and twitched throughout my visit. At suppertime he clenched his teeth, refusing even his favorite frozen yogurt.  I asked the nurses to medicate him for pain and settled him to sleep before leaving. I didn’t realize that I would never see his eyes open again.  The moaning and twitching continued through the night. In the morning he was started on a continuous infusion of medications to control his pain and ease his breathing.

  I then began a new learning process. I learned the difference between just sleeping and comatose; just sleeping and beginning to die. His doctor and nurses pointed out the very subtle details that they noticed. While his breathing was regular, it was almost mechanical, as if a ventilator was breathing for him. His doctor explained that he no longer had any conscious control of his breathing. Now he was breathing simply because his brain stem continued to keep him going.  I called the family in. He was given a few hours to a few days. The kids arrived. He continued to breath comfortably and easily. As one nurse commented, when your family is around you, sharing stories and getting along, who would want to go?

  I stopped going home. Sitting and sleeping at his bedside. Watching and listening to him breathe.  As his breath became labored and his colour turned dusky, I found myself sitting with my fingers on his wrist. He was having periods of Cheyne-Stokes breathing; alarming periods of not breathing and becoming duskier by the moment, or so it seemed. I decided it was time to turn off my nurse brain and just be a wife. I had him medicated again and his breathing became quieter, more shallow and his colour remained horrible. His nurse agreed with me that he would most likely not make it through the night. The family was called back in; just a few hours after going home.  Once they were back around him, his breathing eased, becoming more normal and his colour improved.

  Finally the next afternoon, with his family present, he gave a sudden loud gasp and passed away. In the end there was no warning. He chose to go after my sister arrived to take care of me and before the others headed home for the evening. His nurse commented that he was taking care of me to the end. I don’t recall how long I stayed with him. I got the impression that it was perhaps not long enough by some standards.  I did feel that If I stayed too long I may get stuck in the moment and never leave.

“The song is ended, but the melody lingers on.” – Irving Berlin

 

The Imperfect Mind (isn’t always the one with the tumor)

 

  I admit it; I’m not coffee shop savvy. I go to Starbucks with friends. I pretend I know what I’m doing, I’m a poser. Yesterdays coffee date with friends was much needed for human contact (the non medical kind), but I wasn’t out for a latte choco-moko- macchiato (yes I know that’s not a real drink). Nor did I want a huge overpriced sticky sweet treat. I asked for a tall house blend. The cashier told me what was brewed; I heard mwa-mwa-mwa. The barista asked “do you want room left for dairy? “ My poor foggy brain couldn’t translate. Pardon me? He didn’t get it, I only speak milk or cream, he repeated the question. I heard, “mwa-mwa-mwa in that?” Rather than look awkward, I answered “no thanks” and proceeded to sugar up my black coffee (normally I take two cream). Fortunately it was very good coffee and the company more than made up for it. We then perused the smutty book section (for laughs only) before purchasing a respectable mystery novel.

Stepping out of the coffee shop into a down pour of rain, I discovered that my shoes were not water proof. This called for an emergency stop for rubber boots. Of course when purchasing snazzy looking rubber boots, one must also get snazzy striped knee high socks for insulation. It takes so little to amuse me some days.

My excursion must have taken too long. As I was driving through the VG parking lot my phone rang. K. was wondering if I was coming to visit today. I informed his nurse that I would be in as soon as I could find a parking spot. Heading down the hall to his room, I was met by another nurse who informed me that he was quite anxious for my company. Who knew rubber boots could cause so much trouble.

 Despite the fuss, K. was relatively calm. He chuckled at my striped knee socks. Eventually the conversation started to disclose what was really on his mind. He began talking about having to go upstairs, not sure what that meant. K. is a devout atheist with religion issues, so this most likely was not a reference to heaven. Next question; “Where do we go next?” Again I doubt very much that this was a heaven or hell issue. I explained how he was where he needed to be, surrounded by experienced, caring professionals.  He wasn’t buying it. “Is it OK with you, if I get the nurse to bring something to help calm your mind?”I asked. He agreed and shortly thereafter had an Ativan tablet tucked securely under his tongue.  After a suitable time frame, I asked if he felt calmer. He nodded yes, but his expression was not one of a man who felt calmer. It was the expression of a man, who had debated with the wife and lost.

   This morning I’m waiting for the Red Cross to pick up the hospital bed. I’ve called to let K. know that I may be late. Still I wonder how far I will get today before my phone rings.

Guilt not optional (but clothing may be)

 

 

After months of declining health and questionable home care, my resolve to keep K at home was exhausted. I was tired, cranky and devoid of all compassion. Despite assurances that the public trustees office would deal with anything regarding K’s mother, we were still being asked to handle the arrangements around her final arrangements.  In the meantime K was becoming far more difficult to handle.  Picking at and sometimes pulling at his catheter. At times it seemed he couldn’t tolerate anything against his skin.  He would throw off blankets and try to take off his clothes. Rather than being helpful, his care workers were uncomfortable and causing increased stress with their concerns.  I would beg and sometimes yell at him to “settle down” and to let me handle things for him. I was in constant fear that someone would lodge a complaint about seeing him through the window, only wearing a diaper. Life was becoming a steady argument. Finally, one Sunday afternoon, I called my kids to come stay with us. I no longer trusted myself to be alone with him. The next morning I called the palliative nurse to organize a hospital bed.

  Within minutes of leaving my message, the nurse called back saying she could hear the anguish in my voice and that the cavalry was on the way. Less than two hours later, she called to say that we had a bed on palliative care and the ambulance was on its way.  K was now quiet. This was not his wish. He did not want a hospital, doctors and nurses.  He made no fuss as he was put on the stretcher and taken to the ambulance. Later at the hospital he remained quiet. I asked if he was sad, he answered “yes”. I asked if he was upset with me; again “yes”.

  While visiting with a friend who had lost her husband to cancer, she talked about the unbelievable guilt trips. I had to wonder why no one tells you about this. You may even hear beautiful end of life stories. I have to say, I’m not buying it. My next visit With K. he appeared almost vacant, as though he didn’t know me. I tried to feed him lunch between sniffling and weeping. I could almost hear him thinking, “ what the #*$^ is wrong with this one”. It was a combination of sadness and the fact that the radio was tuned to CBC, friggin’ depressing. I popped in a CD to play.  Finally after several hours of blank stares I asked, “Do you know me?” Suddenly his face brightened and he gave a derisive snort, “Ya”. He shook his head and chuckled.

Ignoring the Inner Voice (again)

 

 Lately I find that I’m reluctant to write blog entries, because everything seems so negative. Then I remind myself that the blog is about dealing with a loved one’s brain cancer. There are not a lot of positive things around that.

  We have a bubbly little caregiver. She brings sunshine with her when she comes into the house. She has finally started to grasp the seriousness of the situation. No longer is everything cute and funny to her.  The other day she told me, “He didn’t have any smiles for me today”.  She said it out of concern, not some sense that she’s entitled to smiles every day. Of course he didn’t have any smiles. He’s been sick, he feels like crap and he just needs quiet, respectful care.

  Over the past few weeks, we have dealt with nausea, vomiting and indwelling catheter issues. Most suggestions of how to deal with these issues have been brushed off as “the effects of brain damage”.  Again it didn’t set right with me to watch him throw up every evening and not do anything about it. Again I ignored my inner voice, because the doctor said it was pointless. That would be the doctor who has not yet laid eyes on him. I asked about the pea soup like urine in his catheter bag and that he wasn’t drinking enough. The response was the same; nothing to be done.  After countless catheter irrigations and a catheter replacement, done by yours truly because VON couldn’t make it in, his VON nurse visited.  Her point of view was that he had a raging bladder infection. His temp had been normal all along, but in a person with brain injury temperature regulation would be questionable (another fact I hadn’t thought of). Amazingly once treatment started the urine cleared and he no longer vomited every day.  Another strong argument for not accepting an opinion from the other end of the phone line.

  Since starting this blog entry K. has gone back to hospital. A topic for another entry.

Life in Reverse

 

 

  It’s amazing just how much of your quality of life depends on the brain. A child’s brain grows and learns at an amazing rate in the first two years of life. Learning to walk, talk, identify when to go potty….. So it should not surprise me that as the brain damage increases, these things progress in reverse. 

  I remember late last year, the palliative care nurse asked K, “are you still able to go out?” He replied “yes”. I corrected his answer, reminding him that he no longer left the house. He looked at me with an arrogant smirk on his face and said, “Well what do you call it when I go upstairs for a shower?” I told him that wasn’t going out, going out meant leaving the house. Now as I think back, I realize how much his demeanor reminded me of a belligerent teen.

   K no longer walks, even with assistance. Communication has been minimal for a while now, but the “glimpses of brightness” that I used to notice are also diminishing in frequency.  His brain has being sending mixed messages about toileting for awhile. For weeks we have been dealing with false calls during the night. Once or twice a night; called downstairs to hold the urinal for nothing. Then in the morning lifting him off a soaked pad. Finally after several days of negotiation and having the palliative nurse come in to confirm my assessment, the indwelling catheter went in. The improvement was immediate.  He sleeps through the night, the brain no longer cries wolf.  However, the new addition is like a scab for him. He can’t stop picking at it. Whether this is his way of understanding how it works or out of concern to avoid kinks in the tubing, I can’t tell.

  He has a sense of urgency about things. I don’t know if this is the brain slowing down or because the wife dropped him. Yes, I the perfect health practitioner dropped my patient. One morning last week, he expressed the urgent need to use the commode. I glance at the lift and decided it would take too long; besides I had been getting him up alone for months.  A few steps with a walker and I turned to pull the commode behind him and down he went. Hard on that right hip. I stared at him in disbelief, sure that I had broken his hip. Sure that he would be going to hospital. I called 911. The EMT’s were excellent, friendly and supportive as always.  However the lift sitting in the corner did not go unnoticed.  I humbly babbled something about a sense of urgency. Very embarrassed; very fortunate, no injury.  I was reminded that we often make decisions in a split second. Sometimes they’re right, sometimes…. not so much.  The VON nurse suggested I should have hidden the lift. Wish I had thought of that.

Life Sucks

 

Acceptance and tolerance and forgiveness, those are life-altering lessons. – Jessica Lange

    Am I really allowed to say “life sucks”? Certainly not according to the many inspirational cards and memes found on facebook and pinterest. It can always be worse; you could be dead. So that leaves me to struggle with my occasional backslides and mega- pity parties.

  I think it’s more apt to say “life experiences can tire you”; deplete your resilience. Although things are starting to pull back together for us; we are now faced with rebuilding and retraining our homecare crew. This really cuts into the respite time. I have unwittingly become ‘the expert’; the one who handles the Hoyer lift with great proficiency. Also as the new home care agency’s policy calls for the presence of two people to use the lift; I am more or less necessary.

  Friday morning I received a phone call that I honestly did not expect. Mrs. C had passed away earlier that morning. My first thought was that she was now somewhere saying, “I told you so. I told you I wouldn’t go to a home”. I spent the next few days, expecting to feel a kick in the backside. That was her last promise to me. Perhaps the soul is more forgiving than the physical mind. This also leads to another personal dilemma for me. Accepting that not everybody has a funeral. The Maritime bound sections of my husband’s family tend to believe this way. They lean more towards the donation of the body; or the private scattering of ashes. For K’s father; it was small family gatherings in the kitchen. A toast to the departed and a very private scattering of ashes, many months later. K has always maintained that he wants drinking and laughter; not the somber funeral home setting. Over the years I come to accept that respecting the views and wishes of others, no matter how atypical by your own standards; that is what counts.