This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.
If you would like to read our story from the beginning, you can start here: How We Got Here…
This has been a week for spiritual conversations – some of which I have been a party to and some that I have not. However, when talking to someone with dementia, you have to always be aware that words do not always mean what they seem to mean at first blush.
For example, this week, out of the clear blue sky, Janet asked me, “How do you get to Heaven?” I first tried to reassure her that she had accepted Jesus many years ago, so there was no reason to worry. But then she started asking followup questions that made me realize that, in this particular case, the answer to the question wasn’t “accept Jesus as your personal Lord and Savior.” For Janet, this question wasn’t about spirituality, but rather was a matter of logistics.
Remember, this is the woman that would not leave on a trip until she knew exactly what roads we would be taking, where we would stop for gas, and which hotels we would stay in along the way. She was asking about Heaven in the same sense that one might ask, “How do you get to The Grand Canyon?”
She is saved, she knows she will be in Heaven. She was wanting to know how she is going to get there? What does she need to wear? Who will come get her? And so on. Think: prepping for summer vacation.
The lesson I learned was that just because I understand the words, I shouldn’t assume that I understand the question. This problem exists in other languages, but in English there can be a certain ambiguity that used to be exploited masterfully by comedians such as the Marx Brothers or Abbott and Costello – and still is by politicians and lawyers.
Sometimes a loved one also needs to be reassured that everything will work out in the end. For example, every morning, I ask Janet how she is doing. One day this week when I asked her, she said, “Not good.” When I inquired as to why, she said, “I grew a conscience overnight.” So I asked her what that meant. She said she was sorry, and she asked me if she was a “bad person.”
I told her that she is sick with Huntington’s Disease and that is responsible for much of what has happened. And the things that she is responsible for have been forgiven, because Jesus died for us.
I assured her that she and God were indeed good. That’s when she got hungry, so I gave her some yogurt and she fell asleep.
Finally, this week, I was out in the garage doing a bit of cleaning up. Going through a dusty box laden with cobwebs, I came across an old journal of Janet’s. When Janet and I first met, I had bought her this journal, advising her to fill it with, “nothing but thoughts of love, peace and goodness.”
The thing is, I didn’t think that she had ever used it – but she did. On January 31st of 1985 she used it to make a list of good things in her life. This was part of that list:
This entry is the first record of her expressing love for me. Is this precious to me? You can’t even begin to imagine.
❦ ❦ ❦ ❦ ❦ ❦
I thought of this topic for a few reasons. First, veils are a common religious and cultural symbol or metaphor. For example, veils are mentioned numerous times in Scripture. Such as in Exodus, where Moses wore a veil after seeing God.
Then there was the veil used in the temple to segregate the Holiest of Holiest (which represented the actual physical presence of God) from the rest of the temple. And, of course, there was the tearing of said veil from top to bottom when Jesus finished what he came to do.
Finally, there are great hymns like My Hope is Built on Nothing Less, the second stanza of which reads:
When darkness veils his lovely face,
I rest on his unchanging grace;
in ev’ry high and stormy gale,
my anchor holds within the veil.
By the way, if you don’t understand the imagery of the last line, do a little research – it will be worth the effort. Hint: As a Christian symbol, the cross didn’t become common until about 400AD. Before that the primary symbol – especially during the Roman persecutions – was the anchor.
And then there are all the ways that veils appear in popular culture, including wedding veils. Then in literature (and not a few questionable jokes) we see references to things such as The Dance of the Seven Veils where veils are used as a device to actually intensify the meaning or power of that which is being “hidden”. And we can’t forget all the places where it is used in the negative sense, such as the unveiling of statues, paintings and plans.
The other reason that it came to my mind is a common belief that when someone is near death, the veil between this world and the next can grow thin, and this week, we had an experience that was – well, I don’t know what to call it, except that Janet seemed to be seeing beyond the veil.
Janet was asleep, when suddenly she woke up and called me over to her bed. She then asked me what my son’s name is.
I said, “David?” (My son who lives in Virginia.)
“No.”
“Larry?” (My son who died shortly after birth.)
“Yes! I’m in Heaven!”
“Do you see Larry?”
“Yes.”
“What does he look like?”
“He’s a grown man with something around his neck.” (Larry was strangled by his umbilical cord at birth.)
Then she repeated, “I’m in Heaven!” several more times, and went back to sleep.
I guess the biggest question that I have had out of the whole experience is this: Why was she seeing a relative of mine? She didn’t see her Mom or Dad, her late brother John who also had HD, or even her favorite aunt (Em) who was also her godmother.
Perhaps it’s similar to a week or so ago when I related that she included my daughter Catherine (Larry’s younger sister) in a list of her daughters. It would seem that my family is now her family, which makes me glad because one of the promises that we made as part of our vows was for our home to be a “place of healing” – and it has been.
In Christ, Amen ☩
❦ ❦ ❦ ❦ ❦ ❦
A prayer for when you are surrounded by strangeness…
“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 magnificence of Your creation. But today I want to bless You especially for the glimpses that You provide of the cosmos from Your perspective. Even though many things about the future remain veiled from my eyes, I can be certain that I will have a place in it with You – and I can be certain that it will be better than anything that I could possibly imagine. Amen.”