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.”
6 Replies to “UNambiguous Loss”
This is wonderful! My pALS and best friend passed away 10/29/20 and I am devastated.
I spent 6-7 days a week with her for three treats. I spent more time with her in those last 3 years of her life than anyone else. I did everything I possibly could do for her. She was my best friend and I am so lost without her.
Everyone else has moved on or is moving on, but here I am still feeling like I did that morning of 10/30/20 when her daughter told me “we lost mom last night”. And the night of 10/29/20 I had this overwhelming feeling of sadness and in some way grief. An overwhelming wave of grief and extreme sadness. Didn’t know why, I would learn why the morning of 10/30/20. I feel guilty for being sad.
How can I still be so sad and her own children are out living their best life, carefree, enjoying each day? Here I am stuck at 10/30/20. So I feel guilty for being sad. I have another pALS, he is at what would be considered end of stage 2 moving into stage 3 of ALS. But it’s not the same, no one else will ever be the same, I know this. He is not my MamaBear. He is a completely different person than MamaBear.
But every single day I wake up thinking about her and I go to sleep thinking about her and many times in between. I miss her. I’m lost without her. But hey, I was just the cALS, right?
Thank you so much for this. As a cALS I think we are widely misunderstood and left out of the loop when we lose our pALS. I appreciate your experience and the feelings you’ve experienced. Again, thank you for sharing this.
Thank you so much for your comment! But know one thing: there is no such thing as “just” a caregiver. Everyone grieves differently — and if they help in healing AND honor the one lost, they are all valid.
That was beautifully written. I’m in the early stages of FTD Dementia so I could envision my husband going through that. He told me the other day that I was losing my humor. I know this to be true. I also know I’m going to lose a lot more before it’s over. Anyway, thank you for sharing that!!!
Thank you for writing! Something to remember is that regardless of where you are spiritually, you are going to be grieving too. You will be grieving everything you are losing.
While you still can, talk to your husband and make sure he knows that whatever you say or do in the future, you love him and will never stop.
He needs that because his grieving has already started.
Thank you. I lost my husband to ALS March 5, 2020 . After only 3 long quick years . We buried him on the 10 th. The world closed down on the 13th . It’s been hard . Lots of time to grieve. When I get real sad I tried to think about what he’s not having to go through. Because it could’ve been so much worse for him, beloved husband.
The thing to remember is that none of your feelings are mutually exclusive. You can be relieved that he is no longer suffering AND be wishing he were still here. That is all very normal and very okay.
Feel free to write any time.