FTD the magician, now you see them now you don’t. MIA but still here – handling the Black Hole.

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Perseus Black Hole

Photograph courtesy NASA/CXC/IoA/A. Fabian et al.

It has been a year now. A year of missing. Missing my husband, missing my life, missing what could have been. Should have been.

There is a hole in the fabric of my life. A hole where there used to be so much love. Love is still there of course, around the hole. Love from the rest of the people who fill your life.

But the hole seems bottomless. A deep dark hole. A Perseus galaxy – grade hole.

Not to be depressing but even after a year I’m not certain it can be repaired. I’m not depressed, just realistic. I’m actually quite happy considering. Not happy that he’s not here anymore, but okay with my life. Comfortable in my pain. I  can control it now. Can visit it whenever I like without it being overwhelming.

The hole starts to develop of course even before the end of life. My husband was MIA for quite some time before he actually left this mortal coil. The hole starts as a little fraying around the edges. Day by day a few more threads fall off. The speech, the emotion, the insight. Never the love though. At least not in our situation. The love continued until the very end. Even when the hole was huge, the love was still there.

The beginning of the disappearance was insidious and slow. A word here, a word there. An odd look or gesture. And so it began.

How you handle the decline relies largely on your relationship in the first place. If you learn about what is to come, it is still not pleasant, but at least you know what you’re dealing with. Don’t hide from it. It will find you. The bastard disease, as I came to call it, cares nothing for your love. Cares nothing for the hours, months and years you have spent loving, arguing, kissing, irritating, laughing. Cares nothing for history. Or for present or future. Just steals everything away. And puts it down the hole.

So many people tell you things. They tell you to “take care of yourself”. They mean it too. You want to, but the bastard disease gets in the way. Taking care of yourself requires effort and energy. These two things are in very short supply when you are taking care of and watching out for someone else’s interests.

Handling the Black Hole is tricky. So much depends on so many things. Finances, work commitments, family, your own weariness.

  • Once you succumb to the bastard disease and accept its power, you are able to move forward through hard times.Not easy, but doable.
  • You have to accept its omnipotence and inevitability. Your human spirit will still twinkle with the tiniest spark of something. Maybe hope, maybe denial. Just like a hole in the fabric of space.
  • Be realistic. Don’t expect too much of yourself. Heroism has no place in caregiving.
  • Don’t make yourself visit a facility just out of duty. Take a day off for goodness sake. Especially if your loved one doesn’t know you’re there.
  • Let go of guilt. That one’s easier said than done I have to admit.
  • The missing begins long before they are gone. It starts when they no longer call you by your name. I was “Wife” for quite a while. It happens on occasions that you used to enjoy together – holidays, sporting events, family gatherings.
  • You will miss even those irritating little things that you couldn’t stand but put up with because of love. You will miss just calling during the day to talk about how yours is going. Watching banal garbage on TV because you’re both too tired to care what you’re watching. Missing stupid stuff that doesn’t seem stupid at the time – just normal.

So, a year on, the feelings of  missing are still there. The bastard disease is gone, but so is my husband. The hole isn’t any bigger, but it isn’t any smaller either.

Last weekend, we had a small family gathering in celebration of our son’s 30th birthday which happens to coincide with the anniversary. I hate that he has to celebrate his life’s milestones on the anniversary of his Dad’s death. Our small family group did fun stuff and hung out together like families do. We played games, went out, enjoyed each other’s company. The hardest part was trying not to think about those last few days one year ago.

We were all aware of the hole. But we included our missing member by remembering and talking about him. Not in a morbid way, but lovingly. We have to think back a few years and remember the times when we were not missing anyone. Make fun of things he did before the bastard disease took over. It wasn’t easy, but these things never are.

We love you, we miss you, we will never forget you.

2 thoughts on “FTD the magician, now you see them now you don’t. MIA but still here – handling the Black Hole.

  1. Having worked as a care worker in a specialist dementia team for 4 years I can attest to the dramatic effect it has on everyone’s lives, not only the person suffering from this tragic illness but also their loved ones. It is like a prison sentence for all concerned. To watch a loved one dissolve in front of your eyes over a period of years is something I hope I never have to encounter personally. I have sat and wept with many husbands and wives who feel guilty because they can’t go on looking after their loved one, the strain becomes too much and you have to let go. I have never known such an illness that strips away a persons dignity. I have lost friends to this disease and I know first hand the pain it causes. I feel for everyone that has been through or is going through the journey of Dementia. God Speed..

    Like

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