This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.
Or if you would like to read our story from the beginning, you can start with: How We Got Here…
This week we are preparing for our move, and as you read this we are making our final preparations for the movers who, if everything goes as planned, will arrive bright and early tomorrow morning and start packing us. The movers estimate that it will take eight hours to get everything in the truck, so the day after, we will start our migration north.
Getting ready to move means going through a lot of old papers, especially in our garage. I have told you before that Janet was a school teacher. However, she was also something of a pack rat. In our garage we have boxes with her grade books from classes she taught 40 years or more ago. Likewise, there were boxes of canceled checks that were not only written on accounts that don’t exist anymore, but in some cases on banks that don’t exist anymore!
However, I also found other things… One such find was a note that she wrote sometime in August of 2019. I know that because in it, she refers to the shooting that took place on the 3
I well remember those times. She was constantly worried about anything and everything. It was then that I started having to censor the radio and TV programming. I also had to be very careful about what I said around her because there was no knowing what news item or bit of conversation she would pick up on and start obsessing over.
For example, if I came home from work upset about something trivial that happened at work, she would right away jump to the conclusion that I was about to get fired, and she would go on about it for days. Ironically, by the time I eventually did get fired (for not communicating well!) her condition had degenerated to the point that she only asked me a couple times if we had enough money, and that was about it.
Thankfully, I had been putting a bit of money aside and we had enough for two months, which I was able to stretch to three months. Still, God brought this job along just in time.
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Several months ago I wrote a post entitled Ambiguous Loss. As I wrote then, this sort of loss can take two forms, the most common of which is feeling you have lost someone when in some way they are still there. A typical example of this type of loss is when dementia turns your gentle, loving spouse into a harsh, judgmental stranger. Or when your bubbly, outgoing loved one starts becoming sullen and unresponsive.
UNambiguous Loss is the old-fashioned, familiar kind, where the bed is empty and you are now officially a widow, widower, or orphan.
(Which, by the way, makes me wonder why isn’t there a word for describing someone who has lost a sibling? We really should have one…)
Even when the loss is finally unambiguous, the ambiguity can nevertheless continue in other ways. For example, a few days ago I got a care package from Houston Hospice that included a couple of books on the topic of grieving. Unfortunately, the books were not written with the world of caregivers in mind. Reading them, you find that the books do spend a page or two talking about death after a “prolonged illness.” The problem is that as you read further, you see that they define “prolonged” in terms of weeks and months – not years or even decades. Not surprisingly then, these books were written assuming a timeline that proceeds something like this:
- Loved one becomes ill, injured, etc.
- Loved one dies.
- Grief starts.
To be fair, this plan works fine for the majority of deaths – like if Janet had been hit by a bus, or had suffered a sudden heart attack. But it falls apart when the illness takes years or decades to reach its solemn conclusion. The problem is that in the sort of scenario many caregivers face, the three steps are no longer discrete points in time delineated by sharp edges separating one step from the next.
Rather, the steps get smeared out in time like a rain drop running down a window, or a tear running down a cheek. As a result, the steps start overlapping, getting smeared together. Or to put it another way, each step becomes a process. Sometimes it felt as though all three were happening simultaneously.
To begin with, it is not at all clear when Janet became ill – or is that even the right way to formulate the question? Perhaps I should say it is not at all clear when Janet became symptomatic. Remember, HD is a genetic condition so there was never a time in her life when her genes weren’t messed up. But even determining the onset of symptoms can be fuzzy. Her jaw used to “pop” shut. She said she had TMJ (temporomandibular joint problems) but maybe it was the HD.
But surely death is an absolute, isn’t it? Well in one sense, yes. But in another, I’m not so sure. As I look back, I try to figure out when the Janet I knew started dying. For months, my vigil by her bed had not been about waiting for death, because she seemed to be drifting back and forth between two worlds: the one where we all live, and the one where she is now. So even the concept of death became indistinct and cloudy.
In the end, about all I do know for sure is that, for me, the grieving did certainly not start the 10th of January 2021. For me, and I suspect many others who are caring for loved ones that truly have “prolonged illnesses,” the grieving starts a long time before the person you love and are caring for stops breathing.
In fact, if you look at any list of symptoms of grief you will see that the list is largely indistinguishable from the normal everyday experience of being a long term caregiver. Depression? Check. Feelings of guilt? Check. Exhaustion? Loss of Control? Loneliness? Check, check and check again!
I guess the point here is that things we read can serve to set out expectations of what is right or normal during grieving. So what happens when someone who is already in a precarious state emotionally reads a book that models grieving in a way that is so very different from their own experience? I’ll tell you one thing that can happen: the feelings of guilt that were never very far away, jump out and, taking center stage, start yelling at you.
“See your wife is dead and you can’t even do that right! Man, you are a piece of work! There is nothing that you can’t mess up.”
Needless to say, those sorts of comments are a load of what my Dad used to put on his roses.
Beyond the guilt, the other big issue that has been making itself known is anxiety – especially the fear of being alone. It suddenly struck me today that things are getting more and more serious between Frannie and her boyfriend. His mom and aunt are calling her regularly on the phone and she has met most of his family – of course everybody loves her. So Frannie could be moving back to Houston in the next few months to get married. Which, to be clear, would be a good thing. I have always wanted Frannie to have a life of her own, but still…
So, day by day, the battle goes on and along the way I am learning a few things. For example, it is pretty clear to me that Frannie and I have a lot deeper understanding of love than we would have had otherwise. I remember once, a long time ago, telling Frannie while I was helping Janet get cleaned up after a pee accident, “Don’t even consider telling a young man ‘I love you’ unless you would be willing to do this for him.”
By George, I think she has been listening.
In Christ, Amen ☩
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A prayer for when your grief seems overwhelming…
“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 the gifts of strength and wisdom that You give so richly to all Your children. But today I want to bless You especially for eyes and ears that are learning to work better and better. Many times when he was among us in the flesh, Jesus talked about needing eyes that can see and ears that can hear. The lessons are hard, but I am learning to develop both. Thank you. Amen.”