My Mind Rambles...

It takes a lot of energy and focus for someone with FTD, myself included, to explain things to people. I often struggle to explain what FTD is, what it does to me and how difficult it is for my family to deal with it. Someone recently asked, "How on Earth does your daughter work full time and still be able to care for you?" If you have been following my blog for any length of time, I am sure you understand that my reaction was one of anger and frustration.

We had been chatting on Facebook for nearly an hour by time she asked that. Reading back, I do believe all of my answers were somewhat intelligently written and most of the words were even spelled correctly except for when I was typing too fast and the wire from brain to fingers got confused.

I cook for both of us. I clean the house (no more than I have to) and do my own laundry. At least until late stages, many with FTD do not sit around, unable to contribute to our care. Absolutely, my daughter's life has changed since she convinced me to move in with her after my husband died. Absolutely it has, some for the better, some for the worse. Caring for the caregiver is essential, but what the person asking about her welfare obviously didn't realize is that this last sentence is true for me as well. My life has also changed, some for the better, some for the worse.

Fortunately, I held my tongue long enough to find some humor in the situation. I was able to answer by saying, "She does it quite well." Our chat ended shortly after that. I am not sure if I ended it because I didn't answer how she was expecting or if I became a bit testy after that. I suspect the latter.

Frontotemporal Degeneration definitely alters lifestyles of those with FTD, their family and caregivers. I know I am not easy to live with. (Truthfully, though, I never have been.) With FTD, though, I rarely want to go out anywhere nor to visit with anyone. I forget things. I often struggle to make civil conversation. If I am asked simple questions, maybe like, "I am making a list, is there anything you want from the grocery?" My answer is usually a dumbfounded look. I have to sit and think, go through the past few days to remember what kind of things I may have used up.

It shouldn't be difficult. My needs are simple and boil down to coffee, tea, agave nectar, half and half, frozen waffles, oatmeal and granola bars. Oh, and ice cream. She always keeps us provided with fresh fruits and veggies and healthy snacks.  I have meal kits delivered because they make it easier for me to still be able to cook and they are healthy meals... low fat, low carbs and fresh, healthy ingredients. Plus they are premeasured and simple recipes laid out step by step. Everything is included, so I don't need to worry about the groceries I will need for dinners. Yet it will take me 20-30 minutes to figure out if I need anything for the grocery list.

I try to do housework, one task a day. One day last week, I knew there was something I intended to do that day but couldn't come up with it at all. I mentally walked through the house but, nope, couldn't remember. Later in the day, I was talking to my sister on the phone and she said something about her floor. Aha! That was it, I had intended to mop the kitchen floor! We cut the call off immediately so I would not forget again.

From talking with others with FTD, I know that is how an FTD mind works... in bits and pieces, in forgetting and remembering, in needing to do things right then before the thought drifts off into black holes.

It isn't easy. As the disease progresses, the black holes multiply and grow. Unless I must venture out of the house, I am always dressed in comfy clothes. Usually flannel pants and a hoodie or tee shirt. Sometimes I struggle to remember to put clean ones on. I swear I have the most organized clothes closet only so that I can easily find something to wear and, hopefully, that the colors match. I learned over these FTD years to limit my choices so there are not a huge number of clothing pieces to choose from... except for plenty of hoodies and flannel pants. This should just take me back to my childhood when my father believes no one should need more than 4 or 5 outfits to choose from. It did matter then due to peer pressure. Now, not so much. My peers have FTD so they don't care any more than I do.

I do remember to do my laundry but it is more difficult to remember to wash my bedding. I eventually get there and this crap doesn't matter. It used to matter to me, but no longer. If I am dressed in mismatched clothes, as long as they aren't clashing horribly, it doesn't matter to me and not a lot to my daughter. If it bothers anyone else, so be it! Now, part of this attitude may be helped that I don't know more than a small handful of people down here in NC. It is easier to not worry about what people think when they are all strangers.

For those with FTD, their family and their caregivers, it helps if you learn to fly by the seat of your pants. It helps tremendously to be as flexible as possible. It is more than enough stress to worry about the important stuff like taking meds, remembering to go to the bathroom before it's too late and brushing the teeth.

If a day or two go by without me having a balanced meal, it doesn't matter. Much longer than that, it may start to be concerning. If I don't eat protein for a couple days or fresh fruit and vegetables or anything else we "should" eat, it doesn't really matter. If I want to sleep for 12 or more hours in a day, it matters but only because I need that much sleep that day and if I don't get it, I am in for a bad FTD day.

To me, the bottom line is that FTD is killing me anyway. So why stress about if I eat properly, sleep too much or spend an entire day petting the cat or dog? Keeping a routine can be necessary for the family and/or caregivers but no so much for the FTD'er.

Today's blog is also an excellent example of the wandering mind of someone with FTD. At times, an FTD'er is like someone with AD/HD. You must watch out for those squirrels and I seem to have plenty of them jumping into view today. 

I hope that, despite my wandering mind, I have said at least a couple things to help you cope a bit better.