Sunday, April 2, 2017

...so I keep on going!

Today, I received a compliment that "made my heart proud". The words came from someone who is very dear to me who is also dealing with a fatal disease. She said to me, "I keep hoping to die, but then I would miss you, so I keep on going." I suspect that to some people this comment would not be taken as much of a complement, nor that it is a good thing. I disagree.

The way I took it was that I am still making a difference in her life. Since most of us cannot or do not make the decision as to when we die, providing even a small reason to make her feel like there is still a little worth living for, is a good thing in my mind. Neither of us can drive anymore, so we do not get together nearly as often as we would like. I wish she lived next door so we could spend time together every day. We settle for phone calls. She says that I can still make her laugh. I love hearing her laugh!

Neither one of us gives the other those false platitudes of "You are looking better," or "I would never know you were sick." We also would never ask the stupid questions of "Are you feeling better?" or "Have 'they' been able to get rid of it yet?"

People mean well when they say these things, I am sure. However, these words are hurtful and/or discouraging. We have mirrors, we know what we look like. We know the disease has aged us very rapidly. Some days I look in the mirror and it seems as if I aged a whole year overnight. Just yesterday, I was looking in the mirror and was thinking about the annual Association for FTD conference coming up in 4 weeks and 4 days. (Yes, I am counting that closely!) I had just come across a picture of me at the conference last year and I realized that I look ten years older. I am not digging for complements, it is reality. Kind of sad, but I have two choices. I could think that "Gee, I really look bad." or "I don't look too bad for someone dealing with a fatal illness!" Guess which one I choose!

There are better questions to ask someone dealing with a fatal disease. Many are just a word or two different than the bad examples: "You look good today" or simply "I am glad to see you." Instead of the stupid questions you could say "Are you having a good day today?" or a very sincere "Is there something I could do for you?" What I wouldn't give for someone to offer to wash my windows or pull some weeds. Sadly, I would most likely answer the offer to help with an emphatic "No!" simply because I am stubborn. don't want anyone to see my dirty house or to do yard work that I, myself, hate to do. Even though I would decline, I would really appreciate that someone cared enough to offer.

What would be better is if someone just showed up one day, armed with some gloves and supplies, and said that I should find someone to take me to lunch because they are going to do (insert helpful chore here). I would be embarrassed most likely, but how can you politely refuse? I am not writing this to make anyone feel guilty enough to do this and I hope no one take it that way. I am fortunate that between my husband and me, we do keep the house clean enough, laundry done and meals prepared. It is only the bigger projects that fall by the wayside.

My friend's husband was just telling me this morning that both lights in his kitchen burned out last week, so he had to climb the ladder and change the bulbs. It scared the bejeebers out of me as he should not be on a ladder. I asked if there wasn't someone they could call to do that. He hem-hawed around, my friend said yes there is but he won't ask. I pictured him trying to get up the ladder while leaning on his cane and started giggling. I told him "You are such a man!" He admitted that asking for help would have made him feel useless. Useless? He spends several days a week driving her to treatments and/or doctor visits, does the cooking,plus keeps up with as much around the house as he is able. They are a tad smarter than I am because they do have someone come in to clean their home and have someone to do most of the yardwork.

In the meantime, she and I compare notes on how compensate in order to do things and what things we can still do to make us feel useful and our brains stimulated. She and I keep each other going and when one of us is feeling down, the other can usually brighten our spirits.

If you reread the first paragraph, it could also make a good argument for our country to allow assisted suicide. When faced with a fatal or debilitating illness, the time does often come when you know it is time to end your own suffering. That, however, is an extremely controversial subject and I do not care to get into the debate in this forum.

On a final note, I am reading a book, "What If It's Not Alzheimer's? A Caregiver's Guide to Dementia, Third Edition" and is very informational so far. It will take me quite a while to read it since any new information takes a long time for my brain to process. I have heard a lot of good comments about it. I have only read the first chapter and already have a better understanding of the brain. I'll keep you posted.

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