It is not unusual for me to fall and, other than some complaining muscles and joints, I am fine. The reason I am mentioning this is that now that Spring is finally here, I have a bit of common sense to pass on to the caregivers.
When your loved one is outside and trying to do something other than just sit and enjoy the sunshine and warmth, try to make sure someone is close by. Obviously, you don't need to be right next to them, but within hearing distance. If you cannot manage this, try hanging a whistle around their neck so that they can make a loud enough racket to get someone's attention.
Many years ago, when my husband was racing cars and we were working as safety workers at the professional races, we had to wear whistles. I was concerned about the lanyard strangling me if it caught on something. I took knitting markers that are used to mark your spot when you are knitting. They were open circle, the perfect size and would pull apart without much effort. I relay this story so that you can do something similar if you choose to use a whistle on a lanyard. They could also keep it in their pocket.
The other bit of common sense, check on them occasionally. Make sure they have not fallen or become injured, started to develop a sunburn or wandered off. If you are inside the house, perhaps leave a window open to hear a distress call. I can only vouch for myself, but when I am out sitting on the deck, I often see things that need to be done. Maybe it is something as simple as a piece of paper flying around in the yard or a weed that needs to be pulled. I guarantee that this little thing will bug me long enough that I will get up and do it, even when I have promised to just sit in my chair.
Oh, and don't forget the sunscreen. Many of you have probably read this and said "Duh" but I must admit it is something I never thought of before. Not in my caregiving role nor now with me having FTD.
On a happy note... My sister is getting married in a month! She has been allowing me to do some of the necessary things for her so that I can actually feel a part of the planning and preparation. She has had me searching for some things on the internet and even allowed me to help design and print the invitations. It is wonderful to feel useful and needed for a change! It is actually difficult to explain just how much I have loved doing these things. Could she have done them herself? Probably, but she knew I wanted to be a part of what was going on.
Not being able to do the things that I (and others with FTD) used to do is a constant frustration, especially when no one else is picking up the slack and doing them. This often results in huge arguments because some of the things I can no longer do seem like simple tasks. It is easy for the caregiver to become frustrated because it isn't getting done. The frustration is understandable because they already have so much more responsibility dumped on them and they literally do not have the time nor energy to do it all. It is important for both the person with FTD and the caregiver to not let things like this fester until it leads to a blow up by one or the other.
It is extremely important to discuss things like this, not when either of you is upset, to see if you can find things that the one with FTD can actually still do.
For instance, a few times, while unloading the dishwasher, I cut my finger on a knife. I became afraid to do it after that, so I stopped. It was one more thing that my husband had to start doing. Now, I unload the bulk of the dishwasher, but leave the silverware bins for him to empty. Once he has unloaded the sharp things, I can finish it. Problem solved... without screaming and resentment.
For many of us with FTD, we need to feel like we can still contribute and accomplish things. It may be a simple thing and would not take much time for the caregiver to do, but it can make a world of difference for the one with FTD. I love being able to unload the dishwasher again as well as a few more little tasks around the house. I need things like that to make me feel good about myself and those opportunities do not happen much anymore.
I know that all the things I have mentioned this week are things that most of you have thought of on your own or picked up along your journey with FTD. Sometimes, though, it is the simple bits of common sense that we don't see. I never thought that I could not get my husband's attention if I fell. I also don't stop and think, before getting up and doing some little thing in the yard, that I don't have my cane with me right then. That definitely contributed to my fall today. It is just common sense and my husband has bugged me about it many times. Sometimes a little reminding, even if it becomes pestering, can be a good thing, even if I get angry when he does it.
It is extremely difficult for the person with FTD to realize that the pestering is for our own good. It is also necessary for both to recognize when it is time to back off. Sometimes it would make more sense to just carry the cane outside and say "You forgot this."
Something interesting happened between writing the last paragraph and this one. My sister and her fiance stopped by for a short visit. She took one look at me and said, "You fell again, didn't you?" There is just no hiding some things from a sister.
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