The Ultimate Conundrum

co·nun·drum

/kəˈnəndrəm/

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noun

1. a confusing and difficult problem or question.

   "one of the most difficult conundrums for the experts"

I have decided that FTD is a mess of conundrums.  The other day, on a Facebook chat with others with FTD, someone mentioned how very lonely they were. Most, if not all, of us chimed in that we were as well. Then we realized that we were extremely lonely yet did not really want anyone around most of the time.

I have written many times about how family and friends seem to run away as soon as they hear about our diagnosis of FTD, or any other dementia for that matter. It is so sad, on both sides. Those of us with FTD do still have things to offer to the world. Yes, our frontal and temporal lobes are damaged, but other parts of our brains still work. Our memories are often not stolen until the end of the disease, at least the long term memories. You want to know about a family gathering at my grandmother's house when I was 15 or even 5? Just ask me, I can remember. I can remember where each of us was sitting, what Grandma was wearing and what dinner she prepared. 

There is debate as to how accurate these memories are because those without FTD tend to think of our entire brain as being worthless. I will admit that some days it feels that way. However, I can remember every nook and cranny in Grandma's house and in my childhood home. I have a quilt that my great-grandmother made for me. I now have it out of storage and I can look at each fabric and tell you what article of clothing she made out of each one and for whom it was made. Honestly, there are a few I don't recognize but those were probably made for someone I didn't know or had never seen them in it.

Instead of family members being interested in my stories, they are full of doubt that they are genuine memories. "It is just one of her freaky ideas!" or "What an imagination!" I could go on about everyone who has dropped out of my life. I can't really fault them because it can be difficult to spend a lot of time with someone who has dementia.

Another aspect of our loneliness is that we lose our independence after diagnosis. We can no longer drive so any activity has to be planned out ahead of time. Many, including me, no longer have the ability to plan anything even slightly complicated. 

Okay, okay, you've got it. You understand we can be very lonely. Where is the conundrum?

The conundrum is that even though we are so lonely, we are often not able to enjoy ourselves outside our usual environment. This includes being in unfamiliar places, in noisy places, places with too many people or people too close to us, too many lights, too many conflicting sounds like voices, music and other conversations. Visiting in other peoples homes is no longer enjoyable to me. Especially true if there are pets are very young children, phones ringing, television and video games blaring. 

If I could and it wouldn't come across as demanding and rude, I would give a list of instructions to anyone inviting me to their home.  No pets around me, no babies handed to me, don't ask me to play with children or watch them play, turn of the television and especially video games with all the noises and flashing screens, offer me a seat out of the traffic pattern where no one can come up behind me and on and on. I guess that would limit my outside visits to zero. However, selecting a small, quiet and uncrowded restaurant should be pretty easy. 

Then again, it may be one of those days when I just cannot deal with people at all. Those are very frequent. Maybe 25 out of 30? The actual number is probably higher, more like 29 out of 30. So I will sit in my house with the doors and windows closed so that it does not appear to be welcoming visitors. I often will ignore phone calls because I cannot deal with talking. I will cancel appointments, even doctor visits because I just cannot face people at all on some days. 

Now, you should really understand why I say it is a conundrum.  We can sit and feel extremely lonely yet not want to be around anyone at all. It is another conundrum that friends and family know that there is something "wrong" with us, yet when we do something inappropriate, they seem to forget that we had no control over what we did. How many times do we have to explain about loss of filters, inability to understand sarcasm or subtleties of conversation? How many times do we have to beg forgiveness or utter those words I hate so much: "It's not me, it's the disease."

There is nothing difficult to understand why I (and probably everyone with FTD) want to accepted for who we still are and what we still have to contribute to the world rather than ignored because of our disease.

We read so often about how lonely caregivers can be, how isolated, how tired, how difficult it is for them to get away for even an afternoon. I do not dispute that at all, not one tiny bit. I do, thought, resent it when it is all about the caregiver, with no thought to how lonely those with FTD are as well.

Hello, We're Still Here...

I do apologize, again, for not managing to write a blog entry each week lately. There just is not enough time for writing and sleep both. Sleep must win out a lot more lately.

This part is to mostly all who are fortunate enough to not have FTD, nor are a caregiver. Please, please, please do invite those with FTD to family functions or a gathering of mutual friends. It is so hurtful to us when we hear from someone else or see photos of the event on Facebook and realize that once more, you were excluded. 

The worst experience I had in this regard was when a family member told me that they had all gotten together at Aunt so and so's house. His words were, "It was just perfect, the entire family was there." Uh, wait a minute, last I checked I wasn't dead yet, so that means I am still a member of the family doesn't it? That example happened a couple years into my diagnosis and it still hurts more than I would have ever imagined.

Yes, we have the disease of FTD. We even act inappropriately at times. On the other hand, we quite often rally our energy when attending a special function and appear perfectly "normal." We, or at least our caregiver, can decide if this is a function that it is safe for us to attend. Caregivers can even attend alone if they know it will be too much for their FTD'er. Every few months there is an event with family or friends that I learn about it afterward. If FTD allowed me to cry, I would be crying every time.

Even if you are positive that they won't be able to attend, extend the invitation anyway. Knowing you are missing a special event ahead of time, at least for me, is much easier than learning afterward that you chose not to invite me. Or call the caregiver and ask if the FTD'er or only the caregiver are capable of attending and decide if there are accommodations that can be made to enable attending.  

For instance, I agreed to attend a family event and the host reserved a seat for me near an exit where nobody would be walking up to me from behind. I made it through the entire event. Similarly, I attended a family wedding but chose not to stay for the reception because I knew the crowd would be too much for me to handle. Another family event, I chose to not to attend because I knew I would not be comfortable and could possibly have a meltdown. Even though I knew I was missing the occasion, just being invited meant the world to me.

Okay, that is off my chest. I know it will happen many more times before FTD takes me and I know it will continue to hurt.

The past two weeks have been interesting, to say the least. Our family doctor referred my husband (in case you just started reading my blog, he has advanced Alzheimer's disease) to hospice. A hospice nurse came out and talked for a couple hours with me and our care helper. She promised us the moon. They would assume all the difficult tasks, provide whatever help, supplies or equipment needed, all at no cost. I was so relieved and thankful, until she examined my husband. We had to wake him because he was still in bed after having slept for 20 hours. Of course, he was at his best. I had planned it that way.

It is common for this to happen, the person with dementia rallies when someone comes to see them. His sense of humor actually showed itself. He remembered her name five minutes after she introduced herself. (She had on a name tag with her first name very large.) He can still read or see letters well enough to put a word together... once in a while and it had to be that day.

You probably have guessed the results... he was turned down for hospice. I was kind of stupid to arrange for her to come when he would be at his best so he would be cooperative. I never thought I should not do that. 

Interestingly enough, I always advise my fellow FTD'ers who need to attend a hearing to become eligible for Social Security Disability to go when you are at your worst. Wear no makeup, no fancy hairdos, and not the best or fancy clothes. Make sure you are tired and not at your best. I should have thought of that and not scheduled the visit when he was at his best.

I am lucky that we have one of the very best family doctors. When they informed her that he was not eligible, she referred us to Home Nursing. They were approved for five weeks for physical therapy and a personal care aide to come out twice a week. I really appreciate this help, but those five weeks are going to fly by and I will be on my own again.

We should not have to play those games. People in the position of deciding what we need should be educated in all forms of dementia. They should be able discern whether this is likely to be their true condition or not. It is infuriating to me. Those of us with dementia are treated like third rate citizens, if even that well.

I am grateful for the five weeks of Home Nursing. I was also blessed with a phone call from a local non-profit organization that collects and provides medical equipment and supplies. They are bringing us a fully electric hospital bed. No questions about income or eligibility, they don't do that. If you need it and they have it, they give it to you. I sure know now where all his medical equipment will be donated when it is no longer needed.

I am also grateful to have a few hours to myself today. He decided to watch his alma mater play a football game. That means he has it on the television and is sleeping in his recliner where he would see it if he was awake. I take it when I can get it.

I guess the bottom line of both of these issues I have written about, is to be flexible and knowledgeable about dementia. Whether you are deciding whether to invite someone, considering whether to visit or call someone with FTD (please do by the way) or evaluating their condition. Look at it from all angles and make informed decisions. We are not lepers nor totally useless. 

Look at me. I have FTD yet I am taking good care of my husband with Alzheimer's. Others paint pictures, carve wood, photograph beautiful things, write awesome poetry. That does not mean we don't have dementia nor need to be ignored. It also is not the way to determine the health of us and decide we are just "fine" after a five minute visit because we can still communicate somehow with you and still have a sense of humor. You have to keep a sense of humor if you are living with FTD.