I did a lot of learning this past week. As you know, not only do I have bvFTD, but my husband has Alzheimer's Disease. The task of being his full-time caregiver can be extremely onerous, frustrating and exhausting a much of the time. I have done a lot of complaining about how family and friends, with the exception of my sister, run away in droves as though if they take an hour or two to help out, they might "catch" dementia. After my sister shattered her shoulder badly enough that she is out of commission for many coming weeks, I finally became determined to find some independence.
We, here in Pennsylvania, are fortunate that our state lottery system provides funds for Senior Services van service. You don't even have to be a "senior" as you are eligible at age 55 and at any age if you are disabled. The price per trip is usually between $1 and $1.50. I would pay more in gas if I was still able to drive. A couple years ago, before my sister was able to devote so much time to help me, I had utilized the van service quite a few times but it became more convenient to rely on her, so I stopped calling for the van.
I used the van for three trips in the past week. It means scheduling appointments carefully since the service starts early in the morning, but the last van is at 2:00 or 3:00 depending on which way you are travelling. It has worked amazingly well. I used it to go grocery shopping, to the chiropractor and to a medical appointment. It truly lifted my spirits to have a renewed sense of independence.
Also, this past week, I needed to make a 150-mile round trip for an appointment with my retinal specialist. There now is a retinal specialist in a nearby town, but I have been with Dr. Hoffman for over 25 years and we know and trust each other... me to trust his judgement and knowledge and him to trust my observation abilities and to know when to call for an emergency and when it is okay to wait until the next appointment. When a doctor is sticking a needle into your eyeball, it really helps to know him and have complete trust in him. So the long trip has never bothered me.
However, when you have no transportation, it can be difficult to arrange for an alternate. I finally became desperate enough to post a plea on my Facebook page for someone to drive me. I offered a generous payment and my step-niece stepped up and rearranged her day to take me. She and I have never spent much time together, so it was a great opportunity for us to get to know each other a bit better. So it ended up being a double benefit. We found we have even more in common than we thought we did. I knew her grandmother was dealing with dementia, but did not realize my niece had resigned her job to become a full-time caregiver for her grandma. She is really an amazing person.
I realized that I have to be more proactive in seeking out assistance, knowing that, like many others dealing with FTD have found, friends and family are not exactly beating down our doors to offer help.
A (nearly) life-long friend called to chat earlier this week and I boldly spoke up and asked him if he had any interest in seeing the movie "Bohemian Rhapsody" on his day off which happened to be the next day I bought tickets for an afternoon showing, figuring it would not be crowded (good choice, there were only 10 people in the huge theater). I knew my husband would be okay for a few hours during daylight. (I did not realize how long the movie was so it was dark by time we got home and he was agitated, so I must be more careful about that since it gets dark so early now.) I packed up my earplugs and off we went. I did not even need them. Yes, it was loud but only during the music parts and that was just fine because Queen music has to be played loud, doesn't it? Queen and vintage Beastie Boys, for me, must be blasted!
Despite my apathy that comes and goes, I cried twice during the movie. Of course, one time was when Freddie Mercury died. The biggest cry, though, was when the song "We Are the Champions" was being played. The words really hit me:
"We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions,
We are the champions,
No time for losers,
'Cause we are the champions... of the world." and some excerpts from the stanzas:
"...But it's been no bed of roses,
No pleasure cruise.
I consider it a challenge before the whole human race,
And I ain't gonna lose." and...
"And I need just go on and on, and on, and on."
These words hit me so very hard because it was this week when I became determined to regain some independence and I realized that these words could be sung by every one of us who is dealing with FTD. It hit me that we ARE the champions. I don't think many people realize how strong we are forced to be and how most of us step up to the challenge to keep going on, keeping strong and fighting until the end.
To sum up my week, I found some independence and "I ain't gonna lose." I will still have bad weeks, bad days and bad moments but I "will keep on fighting 'til the end." I know I am the edge of being corny, but, damn... it is irrefutable in my mind, as I wanted to get up and shout at the end of the movie, that we truly are the champions. We keep on fighting this disease and the naysayers who insist there isn't anything wrong with us. We have learned to stick together and fight together. We have learned to love each other, lean on each other and learn from each other to find the courage and determination we need to keep on fighting and struggling to find comfort and I will cling to that 'til the end.
We ARE the champions, my friends!
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