I disproved one of my own theories about FTD. I was diagnosed in 2011 and realized, even then, that I could no longer cry. I would feel an intense need to cry and often felt, that if I could just cry, I would feel better. Many, many other FTD'ers have said the same thing. I have probably even said this in a blog or two over the years I have been writing. How did I disprove it? Strait forward, I cried for two days straight early this week and have continued to break down occasionally in the days since.
Earlier this week, I was contacted by the admin of one of the support groups that includes caregivers and those with FTD. This group is the only support group I actively participate in other than the private FTD Patient Support Group and the AFTD's support group.
The admin, after apologizing, asked/insisted that I removed all of the posts containing links to my blog. She informed me that she had been receiving complaints about the posts and just didn't have the energy to support me any longer. She would not just delete them, I had to go in and delete each one. The ironic thing is that I haven't even been blogging very often since my husband succumbed to his Alzheimer's Disease back in November. So, I went in and after a year or so's worth, I just couldn't do it anymore. It felt like I was cutting off a part of me. About 3 or 4 deletes in, that is when I started crying. Mind, I did not post my blog entries, merely a link to them. If someone objected, they could have skipped right past the links.
When I wrote to the admin and told her I had deleted that far back and if she needed further than that, if she could just delete them all. She then tried to tell me how much she had been supporting me by defending my posts about the fundraising I have done for the AFTD. That was the final straw. I asked her to please remove me from the group. No, I would have to do that myself but I could not figure out how to do that as my FTD was in high gear.
She wrote me detailed instruction and it still took me half an hour to figure it out. The ironic part of needing to do it myself? A dear friend actually posted in the group, clearly upset that I was pushed out. Her post and her access to the support group were terminated in less than five minutes.
Back to the fundraising posts. The bylaws of the group read that fundraisers could be posted if all the proceeds were to benefit the AFTD. The only fundraising I have done benefited the AFTD. The last fundraiser I did, before the current one, was for caps and shirts bringing awareness to FTD. Plus, the ones done last year were at the request of quite a few caregivers, not those with FTD, and I modified the wording for caregivers.
A fundraiser had just ended, so I was fairly certain the complaints were about that one. I had come up with an idea to have face masks that raised awareness of FTD. Since the masks had already been paid for by my daughter and I, 100% of proceeds went directly to the AFTD. I did not touch the money. All the ordering and donations were handled by Classy, the AFTD's preferred fund raising platform. All that I did was design the masks, pay for them and mail the orders out once they arrived. I followed the group's rules so I was floored by her telling me there had been objections. When I had extras at the end, I took the orders but the donations were again made directly to the AFTD. I had told no one except a member of the AFTD staff that my daughter and I covered the costs of the masks themselves. I would never have mentioned it here except for hearing of their objections to my posts about the fundraising. It should have stayed between me and the AFTD, but I felt I needed to defend myself. Seems quite pathetic to me that I needed to.
Back to the complaints about the masks. I was accused of running a scam. I was informed, not so politely, that someone's dad had ordered 5 masks, but only received 2. I told her that since 5 masks would not fit in one envelope, they were split between 2. I have not heard back from her so I am pretty sure he received the the second envelope by now. I know I did mail them. There were more...
I support the AFTD because of how much they support me and those with FTD and how they strongly work for research on FTD and possible treatments. It seems the least I can do. I do not do it for self-gratification.
The past 12 months have been difficult beyond belief for me. I was my husband's full-time caregiver while dealing with my own FTD. I scheduled a Celebration of Life to be held in his hometown in IL. We couldn't have it do to Covid 19.
For his last few months, I had a woman who stayed at my house 2 or 3 nights a week so I could get some sleep. After he died I had her still come to work for me 3 afternoons a week. It wasn't until I was preparing to move to NC and share a home with my daughter that I realized she wasn't even doing any work except taking the trash from the kitchen to the garage. When I would mention we needed to clean the house, she would insist my house was not dirty. When I would ask her to do a specific chore, her injured hand prevented her from doing it. She did, though, take paint left over from getting my house ready to sell, to her house and painted all the trim with that very same hand. She informed me, after she had done this, that she had taken the paint. I didn't need it, but was planning on leaving it for the buyer so they had matching paint if they wanted to paint another room. As the moving date grew closer, I discovered that she was taking other things from my home. She also conned me out of my car.
Family members had been warning me, but I chose to trust her. Until... her son and his family had stopped by one day to pick up the rug from my husband's bedroom. (She didn't ask if she could have it, she went into the room when the installers were there with the new carpet and told them she was taking it. She even tried taking the large sections left over and handed me a 1" x 12" scrap "in case I needed to patch anything.") While they were in the driveway, I don't think she realized I was close enough to hear, she told her son to go in the garage and see if there were any tools he wanted because I would give them to him. He actually started telling me what he wanted before I informed him I was taking all of them to NC. I wasn't, but I sure wasn't giving them to him.
Of course there were other things... they just kept piling on... but I was semi-holding myself together. After all, I had my FTD friends to support me. Many of them did, The hurt I felt by being rejected by one of my 3 support groups? It devastated me. I did literally cry for two days. I cannot handle any more of this and still hold myself together. I need what little energy I have for when we can finally move into our new house.
I am going to take a break from everything... from blogging, from support groups, from everything FTD related. Fortunately I already have a very small, private support group and I will rely on them for support, as they always have done.
IF, you need answers to specific questions about FTD, I am still here for you. You can private message me any time. If we are not Facebook friends, feel free to send me a friend request. Perhaps, in a few months, after settling into our new house, I will jump back in. At least that is my current plan. Please take care of yourselves!!!
