Saturday, October 12, 2019

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.

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