My Second Long Goodbye: Chapter 4
Now that my wife had gotten through the five week acclimation period and I had navigated my first visit and Jennifer had hosted my family for a beautiful luncheon to celebrate my son’s birthday the next chapter began. This chapter involved figuring out what exactly our new relationship was and how to best accommodate both of our needs going forward. The support group discussed this issue often because there were at the time several members in the same situation. All of us were trying to figure out how often we should visit and for how long. We were trying to determine what our separate lives would be as well as our lives within our new relationship. It is an ongoing question which I struggle with to this day twenty one months after placement.
Adjusting to her new care
Let’s begin with my wife and her needs. As I have already written her new doctor had informed me early on that it could take up to six months to properly balance her medications as they constantly observed both her behaviors and her health. The doctor was visiting monthly at first and I was always there when she saw my wife so we could consult and I would be fully aware of what was happening. It is critical that you be constantly aware of and involved with your loved one’s treatment because they are no longer able to do so for themselves!
Through the group discussions and my sessions with my own therapist I had settled on seeing my wife at least three times a week with one of those visits including an outing if she were up to it on that day. From her placement on April 18th through the end of December I grew increasingly concerned about my wife’s health. She was not sleeping well and she was losing a lot of weight and her ability to walk unsupported. Each doctor visit I was assured that we were still in an adjustment phase trying to correctly balance the medications and that once we did so she would probably stabilize somewhat but that part of what was happening was a natural result of the disease she was suffering from.
Having no medical background whatever I was left to trust the doctor and pray things would turn around soon.
What I noticed and what I can’t know
When I discussed what was happening with my support group several members including my sister related their positive experiences with giving their loved ones some CBD to help with the sleep and anxiety. They suggested I might try it to see if it might help. At this point I was desperate to do anything that might help my wife’s condition improve. Seeing her in such steep decline each time I visited was both alarming and excruciating to watch.
She was becoming more and more withdrawn and weak. Since her admittance in April she had gone from 131 pounds to 101. I was feeling helpless and less and less comfortable with the medical assistance she was getting. So at the next doctor’s visit in January I suggested to the doctor that maybe my wife could be given some CBD to see if it would improve her condition. (The CBD recommended by my sister was 17 parts CBD to 1 part THC.) The doctor was hesitant to allow that because as she told me there were no tests or studies that showed any medical benefit and that she was worried that the THC might have an adverse effect on the drugs my wife was taking.
At this point I became frustrated by her unwillingness to at least try something different. I told her I didn’t care if there were no studies nor did I care what they might show if there were. I had anecdotal evidence from my fellow group members and I was only concerned with one person, my wife and I had medical power of attorney and wanted to try this for her sake. I said so far your medicines have not worked and so I was insisting that we try this.
She had now been treating my wife for eight months and all I was seeing was steady decline. After much discussion I convinced her to at least try it and see what happened. She was reluctantly willing to allow it as long as it was only CBD oil without THC. After the doctor left and I finished visiting my wife I drove immediately to the store and bought some pure CBD oil and brought it back to the facility so they could start administering it to her that evening.
I felt a sense of relief that at least I was now doing something to help my wife feel better.
Between the January doctor’s visit and the next one in February I noticed no improvement in my wife’s condition. At this point she was almost nonresponsive to me when I would try to engage her. At the February doctor’s visit I was dumbfounded to learn that even though immediately after the January visit I had purchased and delivered the approved CBD oil for my wife it had not yet been administered because the facility had yet to receive a written order from the doctor to do so!
I was livid and went ballistic! I asked how could this be happening we had made an agreement a full month ago and now that time was lost and my wife was worse. Truly at that point in early February seeing my wife’s condition I believed she would be dead by the end of the month! The doctor apologized and immediately authorized administering the CBD oil that night! I was relieved but I left the visit distraught and angry truly believing that the end was very near.
My wife got her first dose of CBD oil that night before she went to bed. The next morning I got a call from the facility telling me that for the first time in months my wife had slept through the night! I was ecstatic at the news. Since that night my wife has slept through the night every night and her health has shown steady improvement. At this writing she has gained all of her weight back and our visits are filled with laughter and love.
A miracle has happened and while I cannot prove that CBD oil is the cause I believe it to be so! (As an aside here at the next doctor’s visit seeing the incredible improvement in my wife’s health the doctor turned to me and said maybe I had taught her an important lesson with my insistence on trying an alternative to the medicines she was prescribing.)
I do want to caution here that I have no medical background nor any evidence that CBD oil caused this turnaround in my wife’s condition and I want to emphasize that I am not advising anyone to use it with their loved ones because that is not something I am qualified to do. I am merely telling you what happened at this point in our journey!
Finding a visiting routine
Since my wife’s turnaround our relationship has settled into somewhat of a routine. I try to visit her at least three times a week. Two of those times I pick up Starbucks and we cuddle on the couch and listen to music from the 50s and 60s and either carry on a conversation as best we can while tapping to the beat and other times we just hold each other close and let our love flow between us. The third visit I try to take her out either for a ride or for a visit to someone’s house or to a restaurant to have lunch with friends.
I encourage visits by other friends of ours and my youngest son who lives in the Bay Area tries to visit monthly. I attempt to provide her as much stimulation as possible in the hopes that her quality of life is as good as it can be considering her disease and placement. It is obvious our connection is still deep and profound and she still knows and loves me and I her.
The past couple of rides have given me some pause. Each time we go someone joins us – our close neighbor and friend, a former colleague, or our sister-in-law. The outing is always the same. We stop and get a drink, we turn on the music and we always take the same drive. We have been doing it for months now always resulting in a pleasurable experience for the three of us. However the past two rides have seen my wife get car sick - something she has never done in the thousands of miles we have driven over the years.
And the last time I went to take her for and outing to join friends for lunch she could not be convinced to come. So I am wondering are these signs of deterioration in her condition? When I first placed my wife I asked the owner, Jennifer how long she thought this journey might last even though I know no one really has that answer. She looked at me with empathy in her eyes and said maybe two years! We are now at twenty-one months!
How much longer will this heartache last and what of my life while it does and beyond? That is for next time!
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