A couple things came up this weekend and I realized they go hand in hand.
Yesterday, I called to check up on my aunt and uncle. As we talked, my uncle said to me, "You do know there is a special place in heaven for you, don't you?" I laughed it off and said that I would have more friends with me if I went to hell. His saying this was triggered by me assuring them that their box of Christmas cookies would be arriving this coming week, that I had not forgotten about them. Even though I am unable to deliver them in person this year, I was making sure they got them. They are part of the reason I have been baking for the past three weeks or so.
He went on to explain why he felt that way, that he views me as a very strong person in how I persevere through life with FTD. He believes that, despite knowing there is no treatment or cure, I keep up with everything I can and still take time to think of others. I do, and it might just be selfishness that inspires that. It makes me feel good to help others since there isn't a whole lot I can do to help myself.
I reminded him about the online support group that I rely on so heavily. I talked about how I see almost everyone in the groups doing the same thing, helping each other and helping others whether they be family, friends or strangers.
This part of our conversation did not last long even though it is taking me a bit to explain it. When we hung up, it did not stay in the front of my mind. Then today, while going through the postings on one of the online support groups, I saw that a friend was giving us an update on her situation. In reading about everything she is dealing with (and it is a lot), it made me realize just how strong she is and how strong all of us in the group are. Then I remembered yesterday's conversation with my uncle.
These two conversations really got me thinking about our lives with FTD. With this disease, it would be really tempting to just give up and sit around, waiting for it to end our lives. We don't do that though. We fight! We fight to get diagnosed. We fight by doing our own research. I would put the knowledge we each have up against 95% of doctors out there and be confident that we would know more about FTD than they would. We fight for answers on just how this disease is affecting us. We do that by asking questions of each other. We fight to support each other and to lean on each other. We are forced to fight for financial assistance we are entitled to, yet are denied time after time. We fight to live!
If it was not for us "comparing notes" on these support groups, we probably would not have any clue as to what symptoms we are experiencing are related to FTD and which are not. I cannot tell you how often I will be reading through the posts on one of the support groups and have an "aha" moment. These things I had not realized could be FTD related can be little things I have been noticing about myself or even some big things. The "aha" part comes when I realize that it is probably FTD related and I had not even given that a thought. That was how I learned that the Alzheimer's medication can actually make FTD worse. The doctors, not knowing that all dementias are not alike, don't know that so they think they are helping us by prescribing them. I felt much better after I weaned off them. It can be simpler things like how my taste in foods has changed and I no longer like the same things I used to.
We compare notes about suffering from night terrors and how to deal with family members. We make suggestions to each other as to how to cope with an upcoming event. We pat each other on the back when we recognize what they have attempted to do. We are stronger as a group than we are as each of us alone.
I have mentioned before that I see a psychologist who specializes in dementias. She is a great source of support and I get great benefit from seeing her, even though, at this point, it is only once a month. I could not go that long, and would be paying a lot more copays, if I did not have the daily support of those in our support groups.
Yes, we are strong. We have to be. We have learned how to cope with FTD well enough to be strong. We lean on each other some days and other days we help support someone else. I am not strong on my own. I am strong by leaning on my online friends and my family.
On days when I am not feeling strong, am feeling sorry for myself or feeling very angry that I am being forced to deal with FTD, I retreat. I hide in my room, I don't talk on the phone, I don't talk on the support groups. I am not always as strong as I appear to be. From talking with others with FTD, I think we all have days and weeks of this anger and regret. However, we also recognize that it is self defeating and makes us weaker, so we dig deeper and find more strength and keep going, keep smiling and pretending we are just fine.
It is this digging deeper, putting on a smile and pushing on that makes those people, who know very little about FTD, say "You seem just fine to me." And that is why we rely on each other. This disease is not one that those who have not lived with it, either having the disease themselves or being a care partner for one who does, can not comprehend just how debilitating and defeating it can be. How impossible it can be for us to cope some days.
To my online support group friends, I thank you and thank God for you. Without you, I would not be strong at all.
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