Jean O’Brien has dementia. On the Facebook Group “Being Patient: Brain Talks” Jean wrote a personal public letter to God about her life with dementia. A lot of it rang so true in my life. However, I’ve never been mad at God about me having dementia, like Jean has. I believe He gave me dementia for some purpose of His. I have begged him to help me get through it and to let me live as long as possible in a good state of mind. Jean gave me permission to share this letter with ya’ll.
I’m not gonna go through all the, “why me’s?”, which, in the end, is not important and quite frankly, won’t do any good. You know why and that’s just something I have to deal with. It is what it is, something I have come to believe and live with.
I must admit that sometimes, I can get really mad at you, especially on those bad days when everything and anything seems to go wrong, like banging my face with the lid of this big garbage can or getting into the car and smashing my head against the side of it. How could that even happen? I’ve been getting into cars my whole life, I’m a professional, in fact, I even drive one. I shake my head in disbelief! No wonder I’m going cray-cray!
Or how about today that it took me so long to get a prescription authorized by the vet, to lose it just an hour later. Thank you, God, for that young lady who told me that if I lost it, not to worry because I’m in the system. I giggled when she said that! Lose stuff, who, me?
Now I look for things in the strangest places instead of in their “normal” spots, which can literally drive you crazy. Oh, I forgot, no pun intended, that’s what this is all about.
You did go a little too far God, and I’ve been meaning to talk to you about that. You gave me (I don’t know if that’s the right word), all these other physical issues, like having to wear that darn Darth Vader mask at night or arthritis inherited from my mother, rest her soul, at the same time that I’m losing my mind.
That’s really a messed- up combination, God, and now I find out that the emotional side of me is crumbling too. Well, I already knew that, but now I’ve earned the label! It’s like one of those Girl Scout badges! I don’t blame you, God, but you’ve got to cut me a little slack once in a while.
Thank you, that there isn’t much more that can go wrong with me, but then again, I better keep my mouth shut! I’m not mad at you for that, but on those sucky days, I’d just like you to give me a break. You’ve heard me yell at you – well, not AT you, To you, along with some other choice words- sorry about that, God, but I know you understand. Sometimes, I think you’re so busy with the world’s problems that you don’t have time for me or is that I’m just not listening. I know you’re always there.
It’s been almost 3 years since I was diagnosed, and I think I’m dealing with it pretty good, until I’m not. I can accept that one day, I’ll die, like everyone else, and I’m not afraid. I know you’ve got me, or that I’ll grow old and have those moments that everyone just shakes their heads and smiles.
Well, that’s already happening and only you know, God, where this is going to go. Thank you for giving me a sense of humor, although my wife thinks she’s funnier – that’s so cute, along with that spark of hope during this difficult time. I’m not hopeful for a cure, but I am hopeful that this will progress slowly and I’ll live forever and a day, and drive everyone else crazy!
I know it’ll be ok. But I’d like to ask you a favor and give me a head’s up when crazy is about to happen – like whisper in my ear or something. I don’t get any warning with this one, I don’t get to grow into it slowly and anticipate the craziness of my disease before it happens. It just happens, out of the blue, like driving to the wrong doctor or rehearsing in my mind, when it’s time to turn at the light. My memory has weakened but it’s my confusion that paralyzes me and that’s probably the scariest part of this.
Dementia has a mind of its own, how absurd is that, and it has no heart. It robs you of everything you are and everything you have built during your entire life, without your permission-quite frankly, it doesn’t give a crap who you are, where you’re from, how much money you have in the bank-nothing. If it’s gonna get you, it’s gonna get you.
Thank you for teaching me to go with the flow of my new life, to “embrace” it, sorry God, but I hate that word, it just ****** me off, as well as the word journey. I’ll embrace my granddaughter and take the journey of a lifetime- but not this. You’ve got to think of another word – I say Walk, but that’s not enough to describe this.
But please help people understand that this really messes with your mind and that we can easily fall into a deep, dark depression. Please have them learn about everything that can happen to us so that they can handle it better at the time.
So anyway, God, I have a couple of things I’d like to ask you for – I figure while I have your attention, I should take advantage of it. So here goes:
Please don’t turn me into a mean old lady, making everyone’s life impossible.
Please give my wife a second chance at love. I don’t want her to be alone.
Please continue to build my kid’s relationship so they always have each other to lean on.
Please put good people, like my wife, in their lives, supporting and loving them just as if I were “here”.
Please guide my kids in their careers so wonderful things come their way that they use to contribute to this world.
Please take good care of my granddaughter and whisper in her ear every night, that Gammaw was blessed to be loved by her.
Please take care of all the babies that I may not “know” or that I may never get the chance to meet.
And finally, God, please watch over and protect my family until we meet again.
Ok God, it’s late, and I know you’ve got a bunch of other people who need you.
Thanks for listening,
I have thought a lot recently about sharing how I am right now in this dementia journey. Jean’s letter to God sounds like my journey in some ways. Jean can still write and communicate fairly well like I can which is what drew me to share her thoughts initially.
I will share it soon. It always helps me to share and I’m always hopeful it helps you be able to care for someone you love better, and for my family to care for me better.
We’re going to have a family weekend so please pray I survive. If surviving on happiness is possible that will be us!
Ya’ll have a Blessed Weekend!