Thursday, May 15, 2008

Denial, Regret, Sorrow, Shame or just Pissed Off

Some of you are aware that I am forard about my dealing with dementia. But many I hear from, caregivers, talk about the charges are in denial and non acceptance of what is. To this I say BS, I know you are true and giving people and really feal that way. But I have talked with over 1500 people that live in this World of MIne and they all knew from the start and still do. What follows is a typical e-mail I receive, filled with love, compassion and not knowing how to really help. I have left off the peoples names for their own privacy. After you read the email I hop to explain why i feel that DENIAL is not a real part of dementia.

"Hi Joe and Lynn.

Unfortunately I don't think that Mom is ready to BELEIVE that she has Alzheimer's. She is the daughter of a German farming family and is very stoic. She has never been known to share her emotions openly, and now the disease has exaberated the issue. Don't get me wrong, she is very sweet, we are so lucky that way. My sister and I both beleive that she sees herself quite differently than we do. She is 84 and was one of the "June Cleaver" type wives. We remember the frequency of the phrase "what will the neighbors think?" She retreats to what we call "the bubble" on a daily basis. The length of these visits to the unknown vary day depending on the good days/bad day thing. It is on these bad days that Mom will hardly speak at all. She goes far away and has a distant look in her eye. We occasionally have opportunity to gently remind Mom that she has "Alzheimer's". She says she knows. She has a very poor short term memory, and we see shades of the future now because there are times when my sister and I feel that Mom does not know who we are. We have a loose diagnosis of AD, but Mom has other stuff going on too. But, dementia is dementia. She has big-time vascular issues, and an aortic aneurysm growing in a spot that is inoperable due to its proximity to a previous stent. She has trouble breathing after just a short walk, and some vertebral fracturing too. The diagnosis of AD helps us clarify to agencies the urgency for financial aide and assistance. We just now after nearly a year have received the "Aid and Attendance" benefit from the Veteran's Administration. The money will help us to pay our hired caregivers and not have to worry as much about spending money that we don't have. We have been spending some money taken from a reverse mortgage and we're almost out after property taxes and a few other medical things, a tooth extraction, and a rebuilt crown, and then new eye glasses. She had macular degeneration and cataracts too. Mom will still do embroidery work, and she loves looking outside from her lift chair at her garden...and the bird feeders and bird bath...going full swing now.

She really enjoys going outside on the sneak, if you will to water the yard. I don't know why but it seems as soon as we leave for an errand or whatnot, Mom will have been outside watering. Bully for her I say.

Still has some spunk when it comes to her flowers...!

Well Joe, I think thats enough for now...gotta go and take core of some stuff...

Thank you again,"

First I say encourage here flower watering and watching. She is still in there and finds this is what she can do. Try to imagine if you can knowing that each day a little more of YOU slips away, a tiny amount of what you could due goes away. Then the process speeds up. HOW WOULD YOU FEEL? I think pretty damned pissed off and would try to hide things, not because of denial, but your own sorrow at the lost, regretting what you did to cause this (which is most likely nothing) and there is some shame with it. You are no longer the person you were, but try to be, I see that in many I talk with. I am mentally and cognitively less then I was a year aga, I even here different words in the conversations I have. I even lose who I am talking to and come back later in the conversation. I have maybe 7 years left, believe me like those that walk with me, I plan on fighting toooth and nail till it comes time to leave. Many mistake the sense of loss that we have for Denial, it isn't we weep for ourselves, because we know better than you what is happening, I may sound quite with it, trust me it is difficult to write this without crying and focusing on what I say. The email above fills my heart with gratitude that these folks are keeping the family together and working through it, They are Heros to me, because we are a handfull. Sixtuplets don't compare to us as time goes on. We will wear you down, but we still love in our hearts and souls. Remember we still have our own brand of pride in ourselves. When I started this blog I made a promise to me to tell it as it is in me and as I see it, no matter the pain caussed me or the people I piss off.If you see our side and there are others like myself who have websites and journals maybe not as cantancerus as me and myore polite and gentle, but I find not a fricken thing gentle, fun, loving, polite in this disease at all.

Thanks for your ear and being out their for me.

God Bless You and This Country of Ours!

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