Sunday, February 25, 2018

Apathy and Loss of Empathy Strike Again

I promise that this is going to be my last blog entry about the loss of my uncle. At least I hope it is. Waiting two entire weeks between the day he passed until the funeral service was very difficult for me. Because, for the past year, I had been calling my aunt and uncle once or twice a week if they did not call me, two weeks of going to pick up the phone to call him triggered my grief over and over again. I did, however, talk to my aunt at least once a day throughout these two weeks. If I didn't call her, she called me. We did not talk for long because she didn't have strength for a long call. I believed I mentioned it in last week's blog entry, but she has cancer that has spread into her brain and is in hospice. She is moving into a care facility tomorrow, which I guess is a good thing. I wish a way could have been found to keep her at home like she wanted, but she is going into the move with a positive attitude.

As my aunt's cancer spread further into her brain, her symptoms became nearly identical to the ones I am dealing with as my FTD advances. I was often able to "translate" what she was growing through to my uncle and explain why she was wanting or not wanting certain things. I had also been able to come up with a few ways for them to cope as her disease progressed. Two of the biggies I had explained to him were apathy the loss of empathy. My uncle's passing made these clear to everyone. At least 15 or 20 people came up to comment on how she did not seem upset, that it was just a thing that happened. 

When people would ask her how she was doing, she would respond "I feel like I want to cry, but I can't." Many of those who mentioned it to me were chalking it up to "maybe it hasn't sunk in yet." I explained dozens of times throughout the day that, yes, she does understand what happened and, yes, she is grieving in the only way she can. She misses him terribly and is lost without him by her side. It is simply that her emotions have been blunted by the cancer invading her brain to the point that the normal signs of grieving are not possible for her to feel or show.

Most people understood it when I explained it to them which was a relief. I am so thankful that they did mention it to me rather than to anyone else in town. (They live in a tiny, tiny town in an area of the state not heavily populated.) Hopefully, now, if anyone does mention that she seemed like she didn't care, others can explain it to them.

This issue has come up many times with others with FTD while they were dealing with funerals. Some have even resorted to wearing sunglasses so that people could not tell they were totally dry-eyed. I am saddened by all these stories. Rather than the families and friends learned about FTD they, instead, pass a judgement.

Just like most of the people I know with FTD are, this amazing woman was a trooper. Visitation was limited to just one hour and the priest did an abbreviated service knowing that it was all she could handle. She was accompanied by a hospice nurse, a volunteer and her sister. They set her up in a nice and comfortable chair. She was tucked up in one of the quilts she had made and the nurse was wise enough to put a medical face mask on her so that she did not become infected with anyone carrying flu or cold germs. She was also able to attend the luncheon for a short while as well. 

In addition to this experience being an excellent example of apathy and loss of empathy, it was a demonstration of other symptoms of FTD. One of the largest things FTD has brought to me is the aversion to any change whatsoever. It can be a change to my routine, the grocery store relocating items or even the change of seasons. I become greatly agitated, restless and, to be honest, extremely irritable. My FTD symptoms also worsen when dealing with any change. By the end of this day, I had survived the three hour trip to their home town, family squabbles, a crowd of people whom I had never met, the total feeling of being out of control and then topped off by the trip home. 

I was lucky though. My daughter had driven eight hours from her home to ours, then the trip up and back to my uncle's hometown, then turned around today to drive back to her home. She also knew how to keep me calm. Most of the time at the funeral home, she kept me sitting on an out-of-the-way sofa and letting people come to me. I did get up and make the rounds a couple times, to make sure I visited with everyone, but again, she was right by my side. At the luncheon, she immediately found us seats in the corner where there would not be overwhelmed by people being all around me. She went to the buffet and brought everything to me so I didn't have to be stressed by too many people near me. How did I get so lucky to have a daughter who understands me and FTD so well? I don't know, but maybe, just maybe, I did something right along the way.

She proves that there are ways for family and caregivers to make things easier for those of us with FTD. To me, it is extremely important for them to learn all they possibly can about the disease and what symptoms it may bring with it. Then when these symptoms develop with their loved one, they are prepared and don't conclude that they are doing it purposely or spitefully. If they have read or heard about how other caregivers have dealt with the symptoms, there is a better possibility they can react appropriately and help the situation rather than worsening it. I do realize that this is not always as easy as it sounds but it can help.

For all the caregivers and family members, please consider joining a support group. Many areas have live support groups for caregivers. There are also many online groups available. Just as I rely on my support groups for those of us with FTD, support groups can be a lifeline for caregivers. 

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