1. Music. That one (or more) song that makes you smile every time because it reminds you of a happy time. One of mine is Crowded House’s “You’d Better be Home Soon”. It reminds me of lazy Sunday afternoons sunning ourselves out by our pool. Swimming and just generally hanging out. Sometimes with friends sometimes just us two. Everyone has an “our song” too. Or maybe several as you traverse the years together. One from the 70’s, 80’s, 90’s etc. songs you remember as markers in the passage of time.
2. Watching. That TV show or movie that you both loved or hated. During the middle stages my husband could only follow shows that he had watched many times. “Two and a Half Men” and “M.AS.H.” were favorites. Short, funny, familiar. Before that though we shared laughs and tears watching shows on PBS that reminded us of our U.K heritage. Along with “Shawshank Redemption”, “Calendar Girls” and “Love Actually”. I can’t watch any of them right now.
3. Football. (Insert the sport or pastime of your choice in here). On Saturdays or Sundays nowadays, my sons and I watch our team, Manchester United. This habit developed over the years. First when our sons lived at home. We would get up at 430am to faithfully follow our team and watch the live games. Enjoyed our “Full English” (breakfast) with friends and family. It was quite the occasion almost every weekend. Happy times.
Of course as the bastard disease took over, my husband lost focus and could no longer sit for 90 minutes or even follow the game. He would echo comments on the game that were made by everyone else. Eventually he would get up and wander around the house. Unable to concentrate on his beloved Man. U.
4. Walking. We both loved to walk. Around our neighborhood. Up the mountain trails across the street. We walked for exercise. We walked for fun and enjoyed the time together away from the hurly-burly of the work week. We walked early in the morning. After dinner. At the weekend.
Walking was something we shared right up until he moved into institutional care. He would walk ahead of me then. Turning to check now and again that I was still there. He loved being outside. The freedom of being unconfined. No talking was necessary. He could just march forward like the old days. No pressure.
5. Dancing. Apart from the “our” songs, which are meaningful for different reasons, any opportunity to dance around the kitchen island made us laugh. If a familiar song from our teenage years came on the radio we would dance in the style we did then. Hilarious. Even when ironic humor was no longer understood, he could understand fun. For quite a while anyway.
6. Friends. It’s amazing how people unexpectedly surface or disappear during a protracted terminal illness. People step up. People step down. It’s quite surprising who those people are. Disappointing too. But people will do things you never expect at all. Sit at your house, cook for you, drive your loved one to an appointment.
Others make promises of things they think you want to hear. Things that you would expect of friends. Maybe their version and understanding of friendship is different than you thought. Still you love them anyway because you sort of understand why they stay away. Understand their excuses.
They can’t stand to see their friend in such a state. They can’t overcome their own pain to help you with yours. Or that of your loved one. Maybe they think your loved one won’t know that they have drawn away. But I think they do. Especially in the earlier stages. It is quite upsetting for them to know that their best buddy can no longer bear to talk to them. You can forgive maybe. But not forget the hurt.
7. Photographs. Looking back at images from earlier in your relationship can evoke fond memories and loving thoughts. This may seem like a no-brainer. But when you’re deep in the midst of handling the bastard disease it can be good for the soul to remind your self of how it was. Instead of looking at how it is now.
8. Food. Favorites change once you get into the throes of FTD. Clinically, it may be that the sense of taste diminishes. What it means for you is that old favorites turn into something no longer tolerated. A propensity for all things sweet prevails. But that’s ok because sharing a Starbucks Frappucino can become the highlight of a visit or your entire day. Just serving something that gives pleasure can be one of the few things that you feel you’re doing right. If it’s not nutritious so what?
At one of his residential Care Centers, my husband would pocket the chocolate chip cookies they gave him at snack time. Then when I came to visit, he would get them out of his pocket and share them with me. They were a little worse for wear – crumbled and melted, but he got great pleasure out of the simple act of sharing.
New favorites can become a source of satisfaction for both parties. For you, feeling a sense of accomplishment at being successful in getting them to eat something. For them, the simple pleasure of taste sensation.
Feeding them love. Good for everyone.
9. Sleep. Sex aside, just the simple act of lying next to a loving warm body evokes a feeling of comfort and security. Sharing a sleeping space brings these things to both people. Sleeping together is often the only ‘alone time’ you get together if you both work and/or have kids. You come to relish those late night/early morning whispered conversations. Don’t want to wake the kids/in-laws/guests!
We managed to sort out many of life’s problems in those stolen moments together.
There comes a point of course, when this may be no longer possible. I did move into a guest room eventually. Mainly because the restlessness of one of you all night doesn’t go well with the other one getting up for work at 4.30 or 5am. Sleeping itself is often a major factor in FTD. Either not enough or a lot.
In the middle stages, while he was still able to stay home alone during the day, my husband would nap frequently. Then when I got home from work, he would sleep all evening after dinner. Then go to bed, potter around in the bedroom for an hour or so and sleep for eight hours. Restlessly – up and down during the night, but still sleeping most of the time.
10. Trips. Traveling together was something we always enjoyed. Back to England. A short hop to Los Angeles or Las Vegas. A cruise. A beach here. A city there. London. Paris. New York. Greece. Spain. Started by my husbands naval history. But furthered by our mutual love of enjoying different places and people. We loved to ‘people-watch’.
The last “big trip” we took together was in 2010. Two years before the bastard disease put a stop to our travels. It was a stressful, anxiety-ridden time but worth the frustration. The last opportunity for a semblance of quality time together.
We traveled to the Caribbean to see an old friend. Relatively happy times. I’m glad we did it.
I have loving thoughts of all these things. It doesn’t really help with the pain sometimes. But remembering is comforting. At first it is hard to remember back to when FTD was not the intruder. Even though there were many years and happy memories before it came along.
All I can tell you is that there can be loving moments and smiles even on the darkest of days during and after FTD has taken what it wants from you.
The bastard disease can’t have it all.
- Frontotemporal Dementia: What is it and how to cope? (caregivertwopointoh.wordpress.com)
- Listing of Helpful Resources Online for Behavioural Variant Frontotemporal Dementia (bvFTD) (drchowftd.wordpress.com)
- Lecture at the Univ of British Columbia, Oct. 2013 (drchowftd.wordpress.com)