This week, it is Valentine's Day and way past time to defend my husband. I have spent a lot of time and energy complaining about him and his lack of understanding of FTD. He still does not have a total grasp of the disease and I truly sense how much he is trying to understand. He also has more patience with me than I should ever expect. Plus, I must keep reminding myself that it is pretty much impossible for someone without the disease to understand what an FTD life is like. On the other hand, it is often difficult for me to remember what it is like for him, to live with someone who has it. I have experienced that with family members, but it doesn't seem to translate into my own situation.
The lack of patience and impulse control that FTD brought to me fairly early in the progression of the disease causes a myriad of problems. It has put me into some pretty dangerous situations. In addition to that risk, the lack of patience and impulse controls makes it so that when I am displeased or frustrated by something, I often lash out. It is not a pretty situation as I can be downright nasty. This happens when I am stressed because I cannot do something I used to be able to do. It also happens when someone, usually my husband, does not understand the concept of "one thing at a time." It becomes worse in a noisy or crowded environment because, in those, there isn't even room for one thing. The noise and crowd fully take up the one thing. I know, by now you are probably saying "Yeah, Cindy, we get this!"
A couple weeks ago, I wrote a blog entry that included learning to try to keep it positive. I did what I said I would and posted notes in a few places that I am most likely to see them. It's simple, just a plus sign on a yellow post-it note. I have one on the wall next to where I get out of bed. I focus on that each morning and remind myself what it means. That move is finally paying off. I see one of those notes when I start losing it, I take a deep breath first. That, just in itself, is often enough to prevent a blow up. More often, it just reduces the volume and degree of the outburst.
Afterward, when we are both calm, I ask him if I can explain what happened. I explain how many things were involved in what I was doing and what that one extra thing was that set me off. A sincere apology is usually in there somewhere, most often both ways. We have set up some strategies for dealing with the overload.
I have suggested that when I am doing something and he needs my input or participation in something else, he lightly touch me on the shoulder. Then I can say "not now" or, if convenient, stop what I am doing and listen. This is working, partly because it gives him a second to question whether it is important enough to interupt what I am doing. This doesn't always work, but it is getting better. If it doesn't work, it is at least much easier to discuss it later when things are calm.
I also asked him to not stand behind me or to walk up to me from behind. FTD, along with my lifetime eye health issues, has stolen my peripheral vision. Because of this, he often startles me when I am focusing on something. It has seemed particularly dangerous when it happens while I am cooking. So he now approaches me head on or from the side. If he cannot, he will say "Behind you!" This is making a positive difference as well.
He may not always understand my outbursts, but he has always been extremely forgiving of me when I do lash out. Now, he is also more willing and open to discussing it later so he can understand. He is also better understanding for my need of a few hours of 'chill' time each evening. This is when I go into my room, in the dark and quiet when I try to read or just sit and ponder.
For the past couple months, he has been attending a local caregivers' support group. Perhaps some of the improvement is from that, just by listening and knowing others are going through the same things. I do, though, credit my new positive attitude for part of the difference. I hope it is making a positive difference for him as well.
Now, for the Valentine's Day part. It is pretty darned difficult to maintain a romantic relationship when one has the disease and the other is the caregiver. My husband has always been a hugger and a snuggler with me. Since FTD, I have not wanted that, especially after a frustrating day. I made myself to start accepting and enjoying those hugs. Now I cherish them as I did before FTD. It's amazing what a difference it makes to me and, I hope, to him as well. I still cannot accept hugs when I am struggling to deal with something. With the sensory overload that comes along with the struggles, the sense of touch is way too much right then and makes the situation worse for me. Plus, to him, at those times he must feel like, on top of lashing out, I am rejecting him and that is not healthy in a marriage.
Accepting those hugs didn't feel right to me at first, the ones in the morning were easier but, after a day of dealing with the frustration and anger than FTD brings, the evening ones were pretty tough some days. It did not take long, though, to cherish the hugs and the time it gives us to reconnect. It is important for us to stay close and remind ourselves how much we love each other if we are going to walk this journey together.
All that is left to say is, "Mike Odell, I love you!" 😍
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