A few years ago, my cousin died suddenly in a vehicle crash. My aunt, whom I was caring for due to her dementia, could not stop mourning because she would forget and every day ask "Is Charlie dead?" Then she would start crying. Needless to say, it broke my heart every time. I know I have talked about her situation many times, so if I have done so in this blog, I apologize. I tell it again because this is often the case with FTD. This is why, when asked, I tell caregivers to follow their gut as to whether to tell an FTD'er about a death. If it someone local who they see often, I believe it is necessary to inform them and, if possible, include them in the funeral to make it real to them. On the other hand, if it is someone they rarely see, I most often suggest not telling them. If, later, they ask about the person, say something like "Oh, he has been so busy lately. I'm sure he will come visit when he can." Like I said, follow the gut, since every case is different. Let no one else make you feel guilty whichever way you decide.
Now, I understand her circumstance much better. Nearly every day, I will think "I should just call Uncle Dick and ask him." Sometimes this happens even while I am sorting through his things. I will think that I should call him and ask if I should keep something. I wish it could work that way. I am pretty sure that I have mentioned how he and my aunt stepped up when my father committed suicide about 25 years ago. He became my father figure, adviser and supporter. They both stepped up and became the best grandparents (and aunt and uncle) to my daughter. This is part of why I loved them so much.
On the other hand, my dad's other brother, has been the opposite. He and his wife believed if they sent me a Christmas card, that was good enough. He called me this past week wanting something my aunt and uncle had that has huge sentimental value to me. The executor and I had actually split this (a set of china) in half which gave us each four place setting. The uncle was furious and wanted me to give him my half "because they should stay together or it will destroy their monetary value." Monetary value???
I wish that had been the end of it but then he said something like "You have dementia anyway, why should you have them?" I actually think his words might have been "health issues" but, of course, I heard "dementia." If you read my blog regularly, you can imagine how this went over with me. If he listened, he should have a much better understanding about FTD now, but I'm sure all he got out of it was that I was stubborn. That's just fine with me. I may not get that annual Christmas card anymore, but I can live without it. It was always so sentimental anyway as it was usually signed "Fondly, Uncle xx and Aunt xx."
I guess I should have known how much sentimentality they have.
My husband was listening to my side of the conversation and was afraid of how I might react. I was fine. I was extremely angry, but I was able to keep it under control. I was proud of myself that I had also kept it under control while talking to him. I only remember stuttering over a word one time. I spoke loudly, but was not shouting. I will admit to swearing at him one time. My husband, as I have talked about, has Alzheimer's Disease, but even he realized how hurt I was by all of this and tried his best to comfort me.
As a side note, my aunt and uncle had a statue of St. Francis in their garden. It had been carved with a chain saw out of a log. It is extremely heavy. It was placed in their garden using a small crane. This greedy uncle announced to the attorney (executor) that he wanted it. I had not considered taking it because of the difficulty they had moving it, plus knowing that when we leave this house, I would have to leave it behind. When the attorney told me the uncle wanted it, I could not stop laughing. He and my aunt live in a condo/apartment on an upper floor. I guess he wanted one more thing for the "monetary" value.
Meanwhile, I am sitting here typing, dressed in one of my uncle's favorite t-shirts that I rescued from the rag bag and a ball cap he had kept that was from the National Forest where my dad volunteered in the summers. I have been wearing his t-shirt for two weeks, ever since I brought it home. No, I haven't washed it. I do sniff it once in a while and it is still okay and I change shirts if I am going out. I guess somewhere in there, between my greedy uncle's lack of sentimentality and my own, there must be a happy medium.
I still see the psychologist who has been helping me since my diagnosis, but only once a month now. I will tell you, she surely has been earning her money the past couple months. My next appointment isn't for 10 days, but if my greedy uncle or someone representing him calls again, I will be needing an emergency appointment. While I am so proud of myself for the way I was able to handle the situation, I feel as though another one may not go as well.
In the meantime, going through a multitude of boxes containing things from their home, I struggle over what to keep, what to offer to other family members and what to toss. I try to think about whether my daughter will want them when I am gone, but it's really tough. How do I get rid of the love letters my uncle wrote to my aunt when they were dating and getting ready to marry. How do I get rid of all the pictures and notes to my aunt from her elementary school students?
I have actually adopted a plan that I often recommend to others. I am saving the things that I know I must absolutely keep. I am also keeping the things I am not sure about. Those are being stored separately and my plan is to go through them again in six months, then in one year. If they survive those two additional purges, they are meant to be kept. I have been doing that with things of my own that I tend to save. I make a pile, then go through it once a week. Usually, I end up asking myself why in the world I kept it.
On a similar note, in an effort to curb my impulse buying, which is usually online shopping since I avoid stores, I have taken a similar approach. I will bookmark it online, or leave it in the "cart." If catalog shopping, I mark the page. I then go back a couple days later to make sure I still want/need it. More often than not, I don't buy it. This has saved me a lot of money. It has also caused a lot of bewilderment as to why I thought I need this! I still do some impulse buying, but have been able to keep it at a minimum now.
So, bottom line is that I am feeling proud of myself for the way I handled this greedy uncle situation. I am proud of myself for the way I am sorting through all these boxes of "stuff" that no one else wanted to deal with. I must admit that finding those love letters is worth sorting through all of the rest and will never be thrown out, at least not by me. I know my daughter will preserve them as well.
I promised myself I would only go through two boxes a day. That is what I advise others to do, to keep it simple so that it does not become overwhelming. No, I have not been successful in that, but do manage stop when I am totally exhausted. I finally admitted that I need to slow down the process and am not going near any of the boxes today. My back thanks me.
From all of this, I guess what I would pass on is to stand your ground. Just because we have FTD does not make us any less deserving. Even if FTD takes over and we start saying inappropriate things, the message is still in there somewhere. If someone can't sort through the cuss words and get the gist of what we are saying, they probably aren't worth our effort anyway.
On the other hand, to the caregivers, family members and friends, we have FTD but we are not deaf. If you are discussing things that involve us, thinking we can't hear, we do hear you. Secondly, if we are talking about something, please do not dismiss what we are saying. We just might have some words of wisdom in us. Don't forget, "I have FTD, I don't have STUPID!" Hmm... perhaps this paragraph will lead into my next blog entry.
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