Sunday, January 26, 2020

Once More: One Thing At A Time

I think we all have them and sometimes I wonder if they are contagious. They certainly snowball, rolling fast enough that there is no way to catch up to them. Many times, you chase them long and hard enough that you are exhausted for days afterward.

What am I talking about? Those days.... the days when everything goes wrong and the problems just keep getting worse or more difficult to fix or both. I can give you an example and how the day tried to destroy me.

Monday morning on Martin Luther King day, I never had a chance to reflect on this saint of a man. I woke up that morning at 8 a.m. which is actually, yes I admit it, early for me. My helper/care partner was not even at the house yet. Upon awakening, I did my usual morning activity of going to the bathroom (of course) and brushing my teeth. Unfortunately, the toilet and sink faucet both sputtered a few seconds and then... nothing. I grabbed a couple bottles of water and finished up.

Next step was calling a neighbor to see if the problem was isolated to me. No one was home, no one!  While continuously telling myself to calm down, that I could handle it, I started calling the water authority. No answer. The water emergency number. No answer. The fire department non emergency number. No answer. The police non-emergency number. At least they allowed me to leave a message but they never did call me back.

Wait, let me set the proper tone here. We had an ice storm the day before and there was an inch of solid ice covering everything. The night before, when I was preheating the oven, I heard horrible popping and sizzling noises. I ran over and shut the stove completely off and then grabbed the fire extinguisher which, thankfully, I did not need. Chalk one up for me. Of course I had to wait until the next day to call.  

Finally, I calmed down enough to venture downstairs to see if something was leaking. As soon as I hit the bottom step, I could hear a river roaring through the garage. One of the water softener canisters had exploded. Fortunately the floor drain was keeping up with the river. (But can you imagine next month's water bill?)

I was so proud of myself, I remember what lever to push down to shut the water off just before the softener. Long story short (I guess it's too late for that.)  Someone came out from the softener company and bypassed the softener so we could have water. With the ice storm they had no repair people available until late the next day. Yep, I need to buy a new water softener. Mind you, I plan on selling and moving within the next few months. I could not leave it on bypass if I did want to sell. Plus our water is horrid without one. It will be installed this week.

Our wonderful appliance repairman called and, after standing on my head, I was able to give him the model number so he could order the part and he scheduled to come install it two days later.

The day after all this, I managed to fix my missing internet connection all by myself. Don't ask what I did, I just kept trying things one at a time, but undoing what I did when it didn't work. That was a successful one thing at a time. I was kind of proud of myself until I realized it was just trial and error.

As I write this, a full week after the ice storm, the drive is still thick with ice but I am relying on the sun to melt it, I spread just five pounds of salt on the edge of the drive so we could at least have a path to the mailbox. My father is probably still cringing in his grave. You NEVER put salt on the drive!  Yes, Dad, I know.

My stove is working again. Dang... I have to cook. Actually . I am very thankful I remembered my One Pot so after the first night, I could cook. Pretty good thinking, if I have to say. All I have to do for the water softener is to write a painfully large check when the installers show up. I wish I could skip that "one thing".

If you have been reading my blogs for a while now, I am sure you are familiar with my mantra of "One thing at a time!"  When I started to feel overwhelmed, I kept saying that over and over. It worked. I could not make repairs myself like I would have pre-FTD, but I got it done. I must also add that the husband of one of our FTD'ers (they live 4 hours away) offered to drive up and help out. My FTD friends are probably the best, at least truest, friends I have ever had in my life.

Now that you are bored or thinking, "There she goes again, making something out to be much worse than it was", I will admit that pre-FTD, I would have handled it all without the blink of an eye. I would not have become frantic at all. It would have been just another day, except maybe an excuse to take a day off from work!

That is the thing about FTD which many caregivers cannot seem to understand. We are only capable of doing one thing at a time. For instance, trying to cook the next night... I had to remember I even had a One Pot and then where the heck it was. Then I had to realize I should rummage through the freezer for things I could put in the pot.  Then I had to go to the pantry to find something to make it saucy. Working the pot was trial and error. I somehow had it on pressure cook not intending to. When I tried to correct that, I had it turned off. I had to figure out how long to cook it. The instruction book did not specify how long to cook frozen meatballs, a packet of dry onion soup mix and a quart of beef broth and a few noodles thrown in. Eh, I did it though and didn't give up. We had a decent dinner as a bonus. All in all, it was probably at least 10 separate things I had to focus on to get that simple meal ready for the table.

Those without FTD, no matter how often we say that it doesn't work to give broad instructions. They still insist on saying things like, "wash your hands and then put the milk on the table." Each of those involves several activities. Going to the sink, turning on the water, finding the soap if we even remember we need soap and then drying the hands. By then we have probably forgotten what we were going to do next and will go sit down in our comfort chair. 

I will go as far as saying that I see this as almost a form of abuse. If the care partner knows we can only do one thing at a time and it needs to be in small of steps, why do they do it? What happens is the one with FTD becomes very frustrated because they know there is something they are supposed to do but don't want to ask because they are afraid they will be yelled at. The care partner is probably tired and when they see the milk is still in the refrigerator, they may even yell, "Where's the milk I asked you to put on the table?" and worse, "Can't you do anything right?"

The answer to that last question is "No, I can't." Honestly, we can't and we know we can't. It is not that we don't want to or that we are lazy or don't care. We just can't. Another part of this is that the FTDer probably already feels worthless and does not need that reinforced.

It takes at least two to make things work. Both parties must remember "one thing at a time." That goes for the care partners when they are faced with overwhelming tasks. When I was caring for my husband (who died in Nov. of Alz.), I kept a list of things I needed to. I would look at that list several (probably more) times a day to determine what was the most important to do. Then, if the important ones were done, I would only work on the others as I had the energy.  Like everyone with FTD, I only have a limited amount of energy. If I go beyond that limit, I am unable to do much at all for a couple days at the minimum. 

I greatly admire the FTD spouses out there who have to juggle, caring for their loved one, working at a job, household chores and raising children. I don't know how they do it.  I do have help in my home a few days and nights. I first hired her so she could be here when I needed to those needed things like grocery shopping. She started staying nights to help with the nighttime situations toward the end of my husband's life so I could sleep. Her main responsibilities are to calm me down when I need to, to focus me back on what I was doing when I get distracted and keep track of my schedule. She does do some light housework as well. Without her, I would most likely be in assisted living. I guess she is my equivalent of an FTD spouse. Thankfully, she has enough patience and stubbornness when each is needed.

I know I have written on this subject a few times, at least, previously. It is so important, though, I think it bears repeating for those who have not been reading my blogs for long. It also is something we often forget. I know I did when I was caring for my husband. When you are exhausted beyond belief, it is difficult to immediately think to give them only a small thing at a time to focus on.

Without "One Thing At A Time", it would have gotten very ugly here on Monday. I was still incredibly exhausted but I did it. I was also proud that I did.

1 comment:

Anonymous said...

Once again thank you for sharing your story. As someone diagnosed with FTD last year and have PPA as well it has been helpful to read ideas and to know what I feel is not "odd" as I think. Since you cared for our spouse so long as well it also helps me understand more what my husband is going through when I argue or complain or criticize un knowingly. Thank you.