One time at Bible Study, as Christmas was nearing, an older woman mentioned that no way is she going to put up a tree this year. Several of us offered to go to her house and do it for her. She refused, saying it is too much work for anyone to do. I went home to my craft room and grabbed an artificial 20" tall tree and hot glued some beautiful ribbons and decorations onto it. Later, when I knew she would not be home, I left it between her storm door and front door with a typed note "Everyone needs a little Christmas." The next week, she suspected it was someone from out group and raved about it yet she fussed that someone went to too much trouble for "just" her.
How difficult does something have to be until we think it's not worth bringing a smile to someone's face or a warm feeling in their heart? Does it have to be for a friend or an acquaintance so that you can actually see the smile or can it be for a stranger? I don't need to see the smile, I get all the reward I need when I know I will make their day just a tiny bit better. It just makes my heart smile!
You are probably asking what this has to do with life with FTD. I will once again need to put my caregiver hat on to explain it. My husband, who is in the late stages of Alzheimer's, is home with me again after being in the hospital and rehab center for four weeks. Our Home Nursing Agency has sent a nurse to see him a few times already as well as a physical therapist and an occupational therapist. (On a side note, they scheduled a home health aide to come help him shower. He said he would let the aide help him, as long as he could leave all his clothes on. Obviously, I canceled the aide. I even managed to not laugh in his presence.) Together, we managed to get him showered. I can only think that he believed the aide would get naked and go in the shower with him!
The nurses all suggested that I get him to do some easy things around the house and try to get him outdoors for at least a few minutes a day. It sounded like a good idea, so I tried. I asked him to sweep the leaves off the part of the deck by the sliding door. He agreed, but insisted I come out with him. The next day, I suggested he go out for the mail and newspaper. You guessed it, I had to walk with him because he was afraid to cross the street to the mailbox. Now, that was funny because I am the one with the history of walking out in front of vehicles. I know I want to get to the mailbox, so I just go, forgetting that there are sometimes vehicles, even trucks full of gravel, that speed down our little road. One of the joys of FTD, no impulse control.
The next day, I asked him to unload the dishwasher. He was very willing and quickly put away the coffee mugs and plates. Then he closed the door and said "That's enough, you can do the rest."
I am sure you can imagine that being a caregiver for someone with Alzheimer's is not easy for someone with FTD. In fact, it gets downright difficult. Besides caring for him, I have had to absorb all the household tasks he used to do, even the financial things. Pretty difficult when I struggle to write out a check, often beginning with the date. What month? What year? The check printers are going to love me. I go through a book of checks in almost no time because I have to void so many.
When I was diagnosed with FTD, we had no suspicions that he was developing dementia himself. He doted on me constantly, until I had to ask him to back off, that I was still capable of doing things. He took over filling my pill boxes, doing the grocery shopping once in a while, just everything he could. I did not realize how much he was doing until I had to start doing it all again.
I am sure you are wondering where I am going with random acts of kindness and needing to become a caregiver. I will get there...
When he unloaded the few things from the dishwasher and then saved the rest for me, my immediate reaction was anger. Understandable, I think, because of the strain of being someone with dementia needing to care for someone with worse dementia. It takes every bit of energy I have. So I am very thankful that I bit my tongue and did not say a word. Thank you, impulse control, for showing up for once!
I sat and fumed for a few minutes, then something occurred to me. If this was a stranger or a friend, I would have offered to take over and do it for them, then asked what else I could do for them. I also remembered how much I appreciate it when my sister gives me an arm to lean on when I am walking in a parking lot or crowd. Or, when I keep thanking her for coming over and driving me wherever I need to go. She always says, "That's what sisters do!"
I went even further and remembered a time when I was fussing about having to make a speech. I just didn't want to do it and I was coming up with all kinds of excuses. My husband looked at me and said, "Cindy, if you take all the energy you are using to complain, you could have the speech written and practiced enough that it will be easy for you."
Here I was, using more energy being angry that he could not even empty the dishwasher or do the other simple tasks I was asking him to do. I was angry that every time he went to ride the stair lift that I had someone install before he got home from rehab, he insisted on me following it downstairs and back up to make sure "he did it right." I kept wondering why he was making such a fuss about sitting down and pushing a button to go up or down.
I was reacting to my husband of 45 years so harshly, yet if he was a stranger, I would be just the opposite. It really turned me around. I emptied the rest of the dishwasher and thanked him for doing the part he did. I sat down to fill his pill boxes for the week and was thankful that I am still capable of doing it instead of growling that I had to do it.
Being a caregiver is an extremely difficult job for anyone. I don't want to make it sound like it is only difficult for me because I have FTD. Of course it does complicate the situation. I do believe that many caregivers fall into the same trap I did. They complain about all the things they have to do. They completely take over because it is easier and much quicker to do it themselves than to have their loved one attempt to do it first. I now find that I am able to ask him to do something because I realize that redoing it after he does it won't take any longer than doing it first and it just might make him feel like he is contributing something.
My attitude has changed. I am still exhausted, but I am not tied up in knots of resentment at the same time. This morning, it was was only 60 degrees in our house. The outside temp had really dropped overnight. When I realized in the middle of the night how cold it was in the house, I pulled up the comforter. When he felt the cold, it did not even occur to him to pull up his comforter. I broke down and turned on the furnace, then returned to his room, crawled into his bed, snuggled up with him and said I would give him some of my warmth. He quickly stopped shivering and actually drifted off to sleep again.
I learned from this. I realized that he does need my warmth to keep him comfortable. It is not always nearly as easy as turning on the heat and snuggling. This is only a vivid example to me that he needs my support to make him more comfortable dealing with his new difficulties in doing anything and everything.
I also realized that it had been a long time since I had the opportunity to snuggle up to him. I warmed him up, but it warmed my heart just as well. I need to remember that feeling and keep in mind that everything I am doing for him is a (not so) random act of kindness.
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