FTD Christmas Present and Future

Christmas presents

Last year, I wrote about Christmases Past. As we inch ever closer to the magical season, my thoughts wander, of course, backwards to happier times. Christmases when our children were small. The Christmas Eves spent at home wrapping gifts, cooking, baking, drinking. Watching old movies on the TV, laughing and joking. I feel very thankful to have experienced all of this. To have felt the love and warmth of happy times with the people I loved and who loved me too.

Later, as we moved through our FTD journey, we all tried to maintain those comfortable feelings. Of course, the children were grown by then, but we maintained our traditions, and they, in turn brought their girlfriends, friends and then wives and children to our table and our funny little quirks.

The last Christmas my husband was alive, we had planned a huge family get-together. He didn’t know of course, but we imagined that he would be delighted as Christmas was always his favorite time of year and to have all of us together would have been his joy. His brother and sister-in-law from Los Angeles, and our son and his family came from Washington state and they all stayed at our house. Our other son, who lived close by was over too with his wife and young son.

A recipe for disaster really.

In the FTD world, any form of change of the environment or even social activity can wreak havoc on the proceedings. Since they have little sense of time or social propriety, family gatherings can be a nightmare for both FTD’er and caregiver. If they are unable to speak well anymore, or understand the flow of a conversation, you will find them skulking off to a distant bedroom where they can be at peace. You and everyone else will have to learn to accept that they just can’t take it any more.

Anyway, back to our story. The family were scheduled to arrive on December 24th. On November 22nd, my husband was admitted to an inpatient psychiatric facility or the first time. On December 9, we moved him into his first residential home. So when we all gathered for Christmas to spend it with him, for what we thought may be his last Christmas, he wasn’t there.

He wasn’t there for the Christmas Eve cooking, wrapping and drinking. He wasn’t there for the Christmas Day mimosas, bacon breakfast and Christmas dinner, complete with crackers, pudding and silly paper hats. He wasn’t there for Boxing Day football, beer and leftovers.

christmas crackers
We visited him of course. In shifts because he couldn’t take all of us at once. We gave him gifts which he did not remember how to open. Ripping paper! One of the earliest memories of Christmas for all of us. The gifts we gave were cast aside. He genuinely did not even understand the significance of the day.  We left sad and dejected that our fun-loving husband, brother, dad had forgotten how to Christmas. We went home and ate our turkey dinner quietly, guiltily almost. We played our board games thoughtfully. We toasted him fondly. To quote myself from last year, he would have been really pissed off that we were doing it all without him. How we missed his tipsy jokes and raucous laughter. We never heard them again. He never came home again. It was the last Christmas of his life, as I knew it would be. I don’t know how I knew; sometimes you just do, don’t you?

But those were Christmases Past. For the last two Christmases, he has not been here in body either. The sense of occasion we all once felt has somehow been diluted. As if he took the spirit of Christmas with him.

We still have our celebrations of course. We try to keep the traditions going and to embrace some new ones. We always had a very “English” Christmas. But now we have American children and wives to consider and so we have Transatlantic Festivities, which include some Mexican traditions too. Our grandchildren have a very multi-cultural holiday! Some of this started when he was still with us mentally and physically. He embraced it all with his usual generosity and charm. Our Mexican family had an aged aunt, about 90+ years old (no-one really knew) who had been a nun and was now cared for by our family. My grandson called her “Little Tia” when he was about three years old and the name somehow stuck and everyone called her that ever after. She seldom spoke and only understood Spanish. But she and my husband got on like a house on fire, especially once his speech deteriorated too. They would just smile at one another, and she would come and sit next to him at the dinner table and he would help her with her food. Touching and indicative of his humanity that still remained despite FTD doing its damndest. Christmas-Dinner

So we made new memories and built new traditions before he left us. I like to think that somehow, he was helping me ease into this new life that I now inhabit. Helping to start new traditions and build on the old ones so that I would have something to carry on with.

My mother has flown from England to be here with us this year.  She’s 81 so it was a very long, arduous trip for her. Last time she was here was in 2009. My husband was in year 2 after being diagnosed with FTD. So he was still fairly highly functioning at that time. There were a couple of incidents, which she did not tell me about until much later. It was our habit when she visited every Christmas to give her a gift that she did not have to carry home on the plane back to England. So it would be a day at the spa or something like that. My husband would take her on a day when I was at work, and she would spend several hours there being massaged and generally pampered. That last year, he dropped her off at the spa, with the agreement that she would call him when ready, as usual. He said “OK” and left. Fifteen minutes later, the assistant came to her and told her that he was waiting out in the lobby for her. He had no idea about time by then, you see. He was in that weird middle stage where everything seems to be ok, but it’s really not. She went out and told him to go home and she would call him. He left, but sat in the parking lot until she called. I think that he was worried that if he left, he would not find his way back again without her. He stopped driving the following year.

I am sure it seems very strange to my mother that he is not here. I have visited her several times in England alone, both before and since he died. But being here, where he lived, it must have finally hit home that he is not around anymore. She doesn’t really ever mention him. She can’t read my book about our journey. When I have visited England since he died, it’s as if they are all stuck in a timewarp, because they were not here when he was going through FTD and only remember him as he was before. Lucky them. I live with a foot in both camps, pre-and post-FTD. But also I went through the middle part along with a handful of family and friends who can truly relate to what happened.

So, Christmas Future. What is that like? Well, now I am living it, it’s actually quite nice. It will be my third without him. I still long for those old days of course. But there’s no going back and no point dwelling on the past. My life was changed and that’s just it. But it’s alright. I am healthy, live well and have  wonderful family. None of that makes up for him being gone of course, but it does ease that pain somewhat.

So all I can do is make the new Christmases memorable for those who will go on long after I am gone too. Give my grandchildren the kind of memories I and my children have. Make indelible marks on their future by stamping my identity on today.

I wish everyone a peaceful and FTD-less Christmas. I hope for someone, somewhere, to have a “Eureka!” moment and suddenly find out why the bastard disease is able to be so successful. And to find a way to destroy it as it has destroyed so many others before. Not just for Christmas, but forever.

Merry Christmas one and all!

Tiny Tim

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