Resuming where we left off last week…
This whole time, our daughter Frannie (who has learning disabilities) has been living with us, and she and I are both taking medications to help us deal with what was going on. Janet, of course, isn’t taking anything because: a) she doesn’t like taking medicine and b) she fundamentally doesn’t trust doctors.
However, a shift occurred a few months ago when I had an appointment with the psychiatrist that was prescribing my meds, and who also treats Janet. After we talked about how things were going at home, the doctor told me that, for her own good, I needed to get Jan onto some medicine – even if it meant giving it to her without her knowledge. Before leaving the appointment, I told the doctor that I would think about the matter and get back to her.
One of the medicines that we had tried with some good affect, was Risperidone. Like nearly all medications that we had tried, Risperidone was not a drug specifically for Huntington’s Disease. Rather, it’s an atypical antipsychotic that is usually used to treat schizophrenia, bipolar disorder and the irritability associated with autism. However, doctors had found that for HD patients it often helped to even out their mood swings and aided them in getting to sleep. A big plus was that it is available as a clear, tasteless liquid that can be put into a variety of drinks and foods, whether hot or cold.
The only problem with the medication was that after taking it for a few day, Janet started complaining of headaches, so she had stopped taking it. But after considering for a couple days what the psychiatrist had said, I realized that the doctor was right: Janet needed something.
It was then that I remembered that we still had several weeks supply of Risperidone on hand from when Janet had tried taking it before. Checking the bottles I saw that the expiration date was December of the following year – the medicine was still good. So the next morning I put the dose that the doctor had previously prescribed (2 ml) into the iced tea that Janet drinks and watched for side effects: headaches or anything else.
After drinking the tea, Janet slept almost the whole day, but thankfully there was no sign of the headaches she had complained about before. But just as important, after the first day, the medicine continued to help her sleep, but it didn’t knock her out. The acid test, though, was whether her doctors would notice a change in her condition at her next HD clinic appointment, which was a couple weeks away.
The short answer is, yes they did! Not only did she do markedly better on the standardized tests that they always perform, but she filled out a form that they needed by herself and at one point even read a bit of a magazine while waiting. These last two items were particularly significant because the HD had severely impacted her ability to concentrate and to do simple things like read and write. It would be a massive understatement to say that the doctors were blown away by the positive change – but they couldn’t figure out what could have caused it.
After the appointment, and before we left, I got one of her doctors (the psychiatrist) to the side and told her what I had been doing. Janet’s medical team had a quick conference and the consensus was that since Janet’s mental state was so much better, I should continue administering the medicine. The doctor even gave me a new prescription. So for the past three months, I have snuck down to the kitchen every morning and put the medicine in her tea.
While the cognitive and emotional improvements are great, for me the nicest change is that when I say, “I Love You” she doesn’t get angry any more, and she even lets me kiss her. Win!
This part of our story raises two important questions, I’ll deal with the first one now and finish the conversation next week:
The medicine that I have started giving Janet is clearly helping her with a variety of emotional and cognitive symptoms, but at what cost for me? The doctors tell me I’m doing the right thing, the social workers confirm it and I can feel it myself intuitively. But somehow my heart seems to have missed the memo, and I felt rotten – especially since we had always made honesty and openness a hallmark of our relationship. After all the talking that I have done about authenticity, there is now a built-in inauthenticity at the very time, and in the very place where I wish I could be the most truthful and real.
To make matters worse, this is just one instance of a scenario where I am increasingly finding myself. Every day I have to deal with the fact that I, as her caregiver, effectively have two lives: the life that I live around friends, family and co-workers, and the simplified, dumbed-down, de-stressed version of that life that I present to Janet. To be clear, I didn’t get up one morning and simply decide to start withholding things from her. Rather, it started innocently enough with a “short private conversation” between me and her neurologist, and then proceeded by small steps as I took over greater responsibility for running the home, and tried to shield Janet from worry and harm. Unfortunately, there really is no alternative because, the simple truth is that she no longer has the coping skills to handle many of the things that are happening around her.
Having said all that, do I still feel guilty from time to time? Oh yeah…
One approach to dealing with the guilt would be to simply point to the improvements that she’s experiencing and decide that it is clearly the right thing to do because it is helping her. The problem with that answer is that it begins to sound an awful lot like, “The ends justify the means” – which is just wrong…
Instead, for me, a large chunk of the answer lies in recognizing that our relationship has changed, and that the HD has changed it. Over the past decade, it has subtly shifted from a spousal relationship between equals, to take on more of a patient/caregiver relationship that is decidedly unequal and preempts parts of the earlier relationship. However, this change doesn’t mean that I am allowed to care any less, or love her any differently. I have seen folks in situations like this justify having an affair, by saying that the person with whom they fell in love and married “…doesn’t exist anymore…”. Due to these mental and ethical gymnastics, they feel that they are therefore free to go find someone else to fill in the blanks for them emotionally and sexually. In fact, on forums dealing with issues like PTSD, this sort of story is dishearteningly common.
However, that sort of pathetic self-justification is never acceptable. As I have written recently on a veteran’s forum, what I signed up for in the marriage ceremony was very clear. There was no marriage contract with page after page of dense legalese, and our marriage license contained no “fine print”. In fact, the exact terms between Janet and I were stated very clearly in front of (as we used to say in the Air Force) God and everybody. So the only real question left for people in a similar situation is, “Are you going to keep your damned word?”
But even in situations where the original relationship was something other than between spouses, the change can be incredibly traumatic. For example, when a parent becomes symptomatic, a kind of inversion occurs where the child has to assume the role of parent to their own mother or father. A good case in point for this relationship change is Frannie. For her whole life, Mom was always the one that took care of her, now she has to be there to take care of her Mom.
The reason for all this discussion is to point out that the cause of the guilt lies in the fact that you can no longer abide by all the terms of the old relationship. For myself, it is clear that while I am still bound by the terms of our marriage vows, my new role of “caregiver” places demands on me that requires a new point of view on the relationship, and a certain amount of emotional detachment.
The part of me that is grieving the ongoing, incremental loss of the dearest friend that I have ever had, is wanting to cry nearly non-stop. However, the caregiver part of me realizes that if I did that, I wouldn’t be able to provide Janet care that she desperately needs. So, for practical reasons, the new relationship needs to overrule the grieving – at least for a while.
Consequently, there are times when, for Janet’s own good, I sometimes have to make decisions for her, and without her “informed consent”. Sometimes I have to try to shield her from troubling details of life. Sometimes I have to be “inauthentic” by putting a smile on my face when what I really feel like doing is collapsing to the floor in a puddle of tears. Sometimes I go to bed feeling guilty for being a “bad husband”.
Welcome to the “new normal”.
As I have said before, Huntington’s Disease existentially sucks…
In Christ, Amen ☩
A prayer for when you are feeling guilty…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for having created me as someone with whom you desire to have a relationship. But today I especially want to bless You also for giving me the ability to have relationships with those around me. But sometimes it hurts when those relationships have to change. Sometimes I feel guilty because I have to do things that the one I love might not understand. Please God, cleanse me from this guilt, guide all my actions to meet my loved one’s highest needs and remind me that, ultimately, you are the one in control. Amen”