I absolutely HATE FTD! The only good part is the friends I have made, online and in person. They get it! ONLY someone who has FTD can understand this. Others, including caregivers, no matter how good, cannot understand what it is to live in our shoes. Many will insist they do understand but nope, no way!
Those of you in the same support groups (okay, just the ones strictly for FTD'ers) may have noticed I have not been as involved as I usually am. I was feeling guilty (yes, I know, no guilt allowed) that I haven't and when I do, am I giving the right responses. I will admit to being exhausted from caring for my husband and chalked up to that.
Over activity is not good for FTD'ers. They may keep up with it for a day, maybe two, but there will be a price to pay. After surviving a busy day, out of the house or in, or company in our house, I have at least one "crash" day. I know I have written about this several times before so I will not repeat it all. If you want more info, send me a private message on Facebook.
I did not blog last week. I wasn't busy and my helper had stayed over so we shared the middle of the night incidents. I just sat at this computer and stared. This is how I was for nearly two weeks (no longer staring at the computer the entire time). I am my own worst critic, so I was upset that I was not doing anything. I was tired alright... tired of FTD and, frankly, tired of having to deal with it. When I looked in the mirror, I was not seeing me. I was only seeing FTD and how much it has changed my appearance.
I was determined to blog today. I was still just sitting staring at the computer. Then I tried going through all crappy things about when I hit on the danged "APATHY". I knew my FTD symptoms were worsening significantly the past few weeks, so why didn't I think that my apathy could be worsening as well?
I, plain and simple, did not think of apathy, because I didn't care. Now isn't that a conundrum? My legs and hips have been hurting so much that it is painful to stand or even to sit. If you know me at all, I don't let anything keep me down but I just could not break through the apathy. Why now?
Humiliation, that's why. My helper, Peg, suggested I take a long, hot, bubble bath. I took her suggestion to heart and it felt sooooo good. Until the water started to cool too much, everything was great. Then... I could not get out of the bathtub. I tried every which way and these legs were just not going to get me out of there. I know I should not have, but I was hugely embarrassed to have to call for Peg to come help my naked self get out.
I ride our senior van service often, it's so wonderful to be able to rely on them. A day or three ago, I could not climb up the two steps to get into the van. And wouldn't you know it... that was the very first time I was riding with a total capacity of 11 passengers. Usually I am the only one or one of two. When the driver offered to put me on the wheelchair lift to get on, sheer embarrassment and determination got on. I managed to get my purse and shopping bags up to the passenger area, then crawled up the stairs and pulled myself upright with one of the support poles.
These two examples sum it up pretty well. The strength in my legs is weakening. Another worsening symptom is my ability to comprehend that someone is talking over the noise of the television. I have to signal for them to stop and repeat what they said but not until turned the tv off and focused what is left of my brain on what I was hearing. Even then, I have to ask them to repeat it a couple times.
Yes, I will admit that my FTD is worsening as my role of caregiver does. But if given the choice of placing my husband or allowing my FTD to worsen as we fight his Alzheimer's, keeping him at home is the answer every time.
I must tell you about something that happened this week. I was trying to get him to go to bed at 10 pm. He had a huge (for him) dinner that lasted until 7 pm and several desserts. He insisted that I needed to cook him lunch before he went to bed because he hadn't eaten all day. He wanted hot dogs. I gave him a couple crackers with peanut butter on them. This did not make him happy one bit. When I was tucking him in, I kissed him and told him that I love him to which he always says the same. Except that night. He wouldn't say it. I left the room feeling miserable and, if I were able, I would have been sobbing. It took me a bit, but I did realize that he was simply asserting his independence. Someone is always telling him what to do. I knew that, without question, when I checked on him for the first time that night. He was lying side ways across the king sized bed, dressed in jeans and warm shirt. He even had on shoes that he had to tie. The topper was when I realized he had a ball cap on his head and that he was sound asleep.
Then I turned on my cell phone and ordered door alarms for all the doors that lead outside. There is no way for me to not hear them. When they said loud, they weren't falsely advertising. I put none on his bedroom door, I will not take away his freedom to walk to my room or the kitchen. Actually, alarms are a good idea even if you have never wandered, don't wait till the first time it happens.
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