Doug's journey Jan-Aug 2012

Beginning of July:
For Coquitlam, it has been a hot day. Tomorrow too will be hot - high of 29 they say. It's west coast norm not to have air conditioning. I'm not sure if it is the weather, jet lag from my trip last week to Ontario, or the changes around me that make me feel so tired.
Since my last entry there has been so much change. Doug was at UBC from mid January until late May. The battle for his recovery was headed up first by Dr Scamvougeras, and then by Dr Berzen of the neuro-psychiatric team as they tried different medications and eventually shock therapy to address the ongoing depression and anxiety syndromes. Finally, it was decided that the structure and safety of an extended care facility would be the best solution for ongoing care and so we entered the provincial system to wait for a facility assignment until our 1st choice would come available.We were faced with the reality of being placed temporarily anywhere between Hope and Whistler. It was a great relief - and answer to prayer - when we were assigned and then got to see the Eagle Ridge Manor. We were told of the assignment in the morning and had to accept by mid afternoon or go to the bottom of the list. The Manor was not our 1st choice but a most acceptable one.
It is bright, well managed, close to home. There are many well run activities with enthusiastic and caring staff. After 6 weeks there Doug participates in many things - bingo, newsgroup, music, WII bowling, crafts and kitchen projects, etc. There is a beautiful garden that had an arbor laden with wisteria when we looked out on it from Doug's room on that first day. Even now, it is a delightful spot for fresh air and with even the chance to view an occasional passing deer and fawn.
It has been difficult to make this decision to put Doug in a Care Home - and that feeling of loss dogs me still. The events of described below though help me to realize the changes may be bigger than I can handle alone in the days and months ahead.
Mid August
I wrote and saved the draft of July and now need to catch up to today. As I type this,  Doug is in the emergency ward in hospital after a frightening episode of catatonia and then delirium. These were just words to me until the horrible events of the past few days. Both it seems are side effects of inappropriate medication. Both thankfully seem to be temporary.
Doug's anxiety and depression have been increasing in the past month or so. Activities he once enjoyed no longer appealed and there were an increasing number of days spent in bed. A family trip to Kelowna did nothing to stop the cycle. He had been eating less and less, sometimes refusing his medications and most recently complaining of excruciating pain. In response to the pain, the doctor at Eagle Ridge prescribed Oxycotin . Doug's brain is highly compromised from the massive 1997 stroke. Although the drug was held back after only 2 doses, the psychiatrists now feel that the Oxy magnified Doug's symptoms until he became overwhelmed with despair leading to the catatonia and the hospitalization last Friday. Then the hospital doctor treated his reemerging anxiety on the 2nd day with Ativan - leading to the confusion and delirium of the next day. It has been a truly frightening experience for us all. However, a positive outcome has been that local psychiatrists have been in touch with the neuro-psychiatrist at UBC. He has agreed to work with them in an ongoing consulting capacity. The next day or two may determine how this will look for Doug's care and oversight.

Beginning 2012

We are starting a New Year and yet it seems too familiar.
As I think back over 2011, Doug has increasingly struggled to maintain his life of joy and "mission". Whether it was the change in medications earlier in the year, or just the length of time he has been on so many drugs, their efficacy has changed and life has been more difficult.
 There has been change in memory, balance, and mood. But probably most significant to Doug's quality of life, there has been a change in focus. How much I realize the importance of purpose, as I  have sadly watched Doug lose his ability to encourage and engage friends thru a weekly phone call and ministry of sharing a Bible passage. It has been his passion to speak into the busy lives of about 40 friends each week, and he has been faithful to that for almost 13 years now. It has defined his days and filled his hours - from after breakfast, sometimes into the evenings, 3 or 4 days each week. What a blessing to him to feel needed and engaged regardless of how the brain injury has removed his ability to enjoy simple things like a good book, a TV program or a drive to the store.
In the past 2 months Doug has been hospitalized for 2 weeks for depression. Again, just before Christmas, the doctor was checking if there was a bed available  for him. In the morning he rises refreshed, but a cloud descends before we finish breakfast, and he retreats to bed to hide from the day. Without the desire to phone he seems empty. If he does engage, what spills out are worries and needless fears. He knows he is depressed but can seemingly do nothing to help himself. He resists my attempts to activate him until about 4:00 pm when he will get up, dress, and have supper. After supper he stays up until 9:30, but always needs to be led to do something. Otherwise he wanders aimlessly or sits with his eyes shut.
This tale is nothing new to those who have lived with depression. It is part of a scenario we endured before, between 1997 to 1999 after his brain injury, until his medications were successful. Perhaps the miracle is that those meds were effective for so long.
I know I have changed in those years as well. I see both hope and fear now. 15 years ago, there were few stones we left unturned in the fight to regain life and purpose. I had motivation and desire to beat this thing. I saw chemistry work a miracle and psychiatry forge a base on which to build a life. But I am now too aware that  brain injury can accelerate the effects of aging - physical and cognitive. Perhaps too, even though the desire is still there, I am more quick to realize my own tiredness and my own vulnerability in the face of mounting odds.
So as we move into 2012, we face an uncertain dance with time. Our future lies once more where God alone knows the outcome - between the wonders of modern medicine and  the cruelty of brain injury. As a caregiver, I'm OK if I take it one day at a time. "Day by day, and with each passing moment, strength I find to meet my troubles here."  I think I need to go to that piano in the living room, page 334, I think it is.....