Here it is, five days after Christmas. This is not the best day to be writing a blog entry, but I am here anyway.
My daughter left today to return home. I keep telling myself that I was blessed to have her here for an entire week. There is no doubt about that, but now that she is gone, there is this huge silent hole in the house. We will go back to talking on the phone nearly every day, but it just isn't the same.
Usually, my advice to anyone dealing with FTD, those with the disease and those caring for them, is to keep the home as quiet as possible to avoid over stimulation. Right now, thought, I want some of that stimulation back. I want those two crazy grand kitties of mine to be running around, chasing each other, climbing all over us... and the purring. I love the sound of the purring. They do it because they are comfortable and feeling loved and it transfers right back to me.
Another common suggestion I make is to keep things calm, avoid a lot of outside activity and that if you have a lot of things to do, to try to not do them all on the same day. The only thing my daughter and I decided against was taking me to see the new Star Wars movie. She had already seen it and explained how loud and dramatic it was, just like all the other episodes, and how crowded it would be. So, even though she wanted to take me, we opted out of that one. We did go out to eat several times, went to a couple stores for things she can't get where she lives, visited family, had family in to visit, made a nice Christmas Eve dinner and Christmas Brunch for ourselves and family.
We did all this, yet I remained calm through the entire week. If you are wondering why I could do all these things that would normally overwhelm me and spin me into a dangerous whirlpool pulling me down, so was I. I realized that it is really simple. My daughter GETS IT! She can see the signs when I am getting stressed. She knows that when I start turning in circles that it means I can't find the thing that I need to focus on. She recognizes that when we are out, if I start fidgeting, I need to go home or find a quiet spot to regroup. We spent nearly an entire day out and about. We went to the chiropractor, met a friend for lunch, visited my sister and her fiance at their home and met their new kitty, went to a coffee shop for a treat and then went and had manicures. Well, she also had a pedicure, but I can not let anyone touch my feet. That is a definite trigger point anytime, anywhere.
If I tried to do this many activities in one day any other time, or with anyone else, it would probably be a recipe for disaster.
I am going into more detail about our visit than any of you care to know about, I am sure. The point is not to brag about all that we did or what a wonderful mother-daughter relationship we have. We do, there is no doubt about that. My point of it, though, is to reassure you that it is possible to live with FTD.
It is so important to understand one another. For me, or anyone with FTD, to understand what the demands are on the care partner and understand if they get stressed. It is just as important for the care partner to understand what drives the one with FTD. Many of us have the same triggers and reactions to things, but we are all individuals and FTD does not have a set pattern as to what order the brain is attacked.
We must learn to adapt and learn to read each other's emotions. My daughter watches for my trigger signals. She will take me aside and ask me if I am holding up okay or if I want to go home. She stays flexible in her plans. We weren't planning on going to the coffee shop, but she recognized that I needed to sit in a quiet place and recharge for a bit. It was after this break that we went to have our manicures. When we were in the car, she always tried to play music she knew I liked and asked me if it was okay or if I wanted her to turn it off.
Can you imagine what that simple question did to me? It made me realize that I still had some control over my own life. She did not once during that day, say okay, time to go here, time to there. She did not once criticize me. She did though, a couple times, lightly touch my arm and ask me if I was okay or if we needed to go home. Like I said, she gets it. She also displays a whole lot more patience than I do these days!
I write this blog every week and often give advice to the care partners. I explain that over stimulation is a bad thing and that you should not expect your loved one to keep up with a frenetic schedule or interact with a lot of people. Those can be vague concepts to understand. The important thing is to learn to "get" your loved one. Learn the signs of impending doom. At least it feels like that when I get overwhelmed and blow up. Listen to verbal clues and physical clues.
Every one of us with FTD is different just like no other two people are alike, we are not either. We may share some of the symptoms and have the same trigger points. If your loved one did not like crowds or excessive noise before FTD, it is going to be worse now. It is important to recognize the signs, like my tendency to turn in circles when I am overwhelmed. It is a sign that I don't know where to go next. Makes sense when I explain it. If you didn't know this sign, you might think I was just acting out and being difficult. Nope. I do not do it on purpose and I have no control over it. It just happens and keeps up until I crash, blow up, cry, scream or start screaming. Hopefully not all at once.
As I said, you need to try to "get" what the signs and trigger points are for your particular loved one. You need to try different ways of reacting to them to find what works best to keep things from getting out of hand. When your loved one stops cooperating, it may not just them being obstinate. It may be a sign that they have had to much and need to shut down for a while.
If I had been out "on the town" with anyone but my daughter, several of the days we spent together could have been disasters. She took over organizing Christmas morning, without making me aware (until afterward) that she was. She never once let me feel inadequate. She made it clear that she was there if I needed her, there to help, not take over.
All this said, those of us with FTD need to try to do some of the same things. We need to try to learn the signs that our care partner is ready to go over the deep end and try to back off. Just like when we are being overwhelmed and need to go to a quiet place and regroup, it is good if we can recognize when they are being overwhelmed and realize that it is time for us to go to a quiet place so they can regroup.
I must remember to remind my husband that I will be not up to par this week, that I will be out of sorts. I will need to adjust to my daughter being gone and knowing that, most likely, I will not see her until April when we go to the AFTD conference together. When I am getting upset and stressed, I am not going to be able to think "Oh, you are just upset because your daughter left." Instead, I will just be very difficult to get along with and liable to turn the emptiness into anger and lash out at him. More than usual, that is.
New Year's Day is in two days. I am thinking that a good New Year's resolution might be to listen and pay attention to each other... the words, the attitude and the actions. Neither the one with FTD nor the caregiver are quite the same as we were before FTD forced its way into our lives. I'm hoping that this just might make our lives a bit better.
Happy New Year to all of you and may 2018 be one of peace, kindness and love.
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