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.

Ramblings of the Exhausted

I don't want to have FTD anymore. Not that I ever did, but it just keeps getting more difficult. I often say that there is no way that anyone who does not have FTD can understand it. There is no way to explain how having the disease feels.

Family members, caregivers and professionals often insist that they do understand. Nope, sorry, unless you have it yourself, you don't!  This past week I have experienced a lot of the vast spectrum of feelings involved with having the disease.

Just two days ago, I participated in a forum organized by the Association of Frontotemporal Degeneration on FTD. It was a virtual presentation to the Food and Drug Administration. The purpose was to educate them on FTD, its effects, the difficulty of getting diagnosed and, most of all, the lack of available treatments and resources for those with FTD, their families and caregivers.

I was happy to participate and provided a prerecorded testimony on my and my family's history of the disease, trying to explain to them how it devastates families and how it can continue for generations.

I did not expect to be affected very much by watching the entire presentation but hearing so many stories of frustration, destruction of lives and fear of the future left me exhausted... mentally and physically.

It seems that it is difficult to anyone, outside of the disease, to understand. Once the event was over, they could jump back into their lives where they left off that morning. It isn't that easy for anyone involved in the world of FTD. It can be difficult for them to comprehend how it can leave us mentally and physically exhausted. "Come on, it's been two whole days, why are you still exhausted from that?"

In my case, after a while, I will realize my daughter is talking to me and that I had missed most of it. Of course, my reaction and next word is "Huh?" Sometimes she will repeat it, other times she will mumble under her breath and, usually, somewhere in between. No, I cannot understand what she is mumbling, except for a word here or there. It doesn't matter what the words are. As soon as I said the dreaded "Huh?" I knew she would be upset. She is not being mean and she isn't angry. She is simply as frustrated as I am.

I have written about this inability to comprehend spoken words. If an FTD brain is not aware that words are coming, it often takes long enough to know and, by then, you have missed something. 

The frustration for everyone other than the FTD'er is akin to living with someone with a hearing problem. It is not the same, though, because those problems can usually be helped.

I do realize I mentioned this is a recent blog. Sorry I got lost on a tangent again and I hope you are still reading... The other thing that has me emotionally exhausted is hearing of three different situations involving an FTD'er and the current circumstances being thrust upon them. I will not even begin to explain the individual issues, it is not my place. You will just have to trust me that, while each is totally different, they all left me concerned, sad and angry.

In two of the cases, it would be easy to blame it totally on the caregiver. In the past, I probably would have. This reaction usually comes from the knowledge that the caregiver can change the circumstances while the FTD'er cannot. But, is that really true? In so many undesirable situations, it may seem to be impossible. When a caregiver or family member is already bogged down with worry, lack of sleep or just plain exhaustion from all the seemingly unending caregiving acts, it can be nearly impossible to come up with solutions that would have come easily before dealing with FTD. Yes, in an ideal situation, the caregiver would have endless energy and patience.

Sometimes I wish that my total apathy and lack of empathy would come back. The years I spent without those were easier. On the other hand, I don't really want to lose them again. I did not feel like myself knowing that I should care but didn't. 

Now, I am wondering if in circumstances that are intense and seemingly impossible to do, if that forces apathy and lack of empathy onto the caregiver. I am not believing that this is true for all caregivers. There are way too many truly bad caregivers out there. You know the ones... the ones who say horrible and hateful things about their FTD'er, the ones who leave their FTD'er home alone for hours even though they know it is not safe, the ones who ignore signs and symptoms... I do not need to go on. 

I don't know about you, but I can understand how caregivers could reach a breaking point and just not care as much as they used to or even as much as it seems they should. Now, it would be easy to say that they should ask for help. Again, yes, in an ideal world, it would. Unfortunately, most of us know how impossible that can be. If you can't even get family or friends to stop by and visit with the FTD'er for an hour or two so you can get some things done or at least to sit down and catch your breath, what is the likelihood of anyone being willing to come and really help?

Those of us with FTD should better recognize how difficult it is for the caregivers. I fear, though, it is often impossible for many caregivers to understand how difficult it is for the FTD'er. We often cannot discern the mood and comfort level of the caregiver. We don't understand subtleties like that. We don't understand sarcasm or have the ability to recognize joking. 

I know how, when someone is dismissive or reluctant to do something I need, I don't have the ability to realize that they might be tired from a day's work or because the store was crowded. If after coming home from the grocery store they say, "It took forever because I couldn't find the things you wanted," What I hear is something like, "It's your fault it took me so long because you wanted all those things!"  Yes, when the paranoia that FTD brings is the filter through which you hear everything, it can cause huge misunderstandings and hurt feelings... on both sides.

I do apologize for rambling. I tend to do that vocally when I am exhausted and, obviously, it is the same when I am writing! Oh, wait, I forgot to say that caregivers don't always pick up on the subtleties of what the FTD'er says or does. Okay, that is for another day...