Why I Do This Blog!

Message = Joe,
First I would like to say that I am sorry for the crappy deck of carded dealt to you. It seems as if we are looking forward to working ourselves to death to enjoy our older years. And then this. It is not very fair at all.

I came across your blog while researching Dementia. My mother-in-law was diagnosed 3 years ago at the age of 51. She progressed quickly and has now lost the ability to talk and lost her ability to control her bowel movements. She is trapped in a world all alone.
Do you have any advice on ways to comfort her? I would like for her to know that no matter if she knows us or not that we still love and care about her.

Thank you for your time and I hope for the best for you.
(we will call her)
Pam

Subject: Your Mom

Dear Pamela,

Sorry it has taken me so long to get back to you. I keep trying and keep forgetting or start and go off and start something else. The nature of this Disease. Being that your mother and I live in the same World which is different from yours. I can just imagine your feelings as a caregiver, that is why I started my Blog, so the outside world could get at least to know how it is for one person and help some to understand those they are caring for.

The best you can do for your mom is what you are doing. Being there for her, talking to her, telling you love her, sitting with her and not speaking, hold her hand, smile at her, keep your tears to yourself, she has too many in her heart to bear yours. Trust me she know deep inside you are there and helping. This disease just stops us from responding well and takes our lives away from us. I know my family gets nuts over me, because I cannot always hold a conversation with them or follow theirs and I forget who the hell they are. I am pretty outspoken and direct if you really read my blog. I am offensive at times and I do not care, because I am discussing My World the hell of it. Be glad on this email I used spell checker, because generally do not I want folks to know how this crap really is. Any further emails I will not use it, so I hope you are good a picking something apart to understand it.

Being there for your Mom is the single best thing you can do for her. I have told my family and it is in my blog, when I get to close to crossing the line of this disease as your mom has, I will say good bye to all and be gone. I will not put myself or family or friends through the last stages. See I worked for a number of nursing homes that had those that could manage on their own and those that needed assisted living care and those who needed accute care, as I was developing this disease. I still remember going through the lunch room at one of the homes (I took care of three homes computer systems) and watched the attended lift this ladies face out of her food and clean her, never I said at that point would I allow my life to become such a burden and worthless being. My heart broke that day and I finally noticed the real death of these folks that were around me. They were gone and someone else was living in them and I cried and said never would I put anyone through that. But remember that is me and my feelings.

I may post this reply on my blog, if you do not mind. I sometimes use the email people send me and my answers back to them.

God Bless and Hold You Tight in His Arms!
Joe

Joe,

Thank you for your response. You are more than welcome to post this on your blog. Reading through your eyes has given me perspective. I hope a lot of other people, especially caregivers, can see this too. Maybe it will take some of the frustration away. Maybe it will help people be a little more compassionate and forgiving and a little less annoyed and frustrated.
Thank you for your insight.

Pamela

God Bless You and God Bless This Country of Ours!

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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!
Joe

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Having Fun

As my neurolooogist said I am tring to enjoy the time I have left in my mind as it its, that is the reaston for the new picture at the bottom. Anyway I don't look so homely. Things are getting rought, starting not to even recognize the lady next to me when staring at her in the store. No yellow brick road here, just a little broken concrete. Catch yall later, I hope.

God Bless
Joe

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My Farwell

The one thing I have tried to say to those I love and care about, my frineds, family, whoever they maybe, I no longer know for sure is not to cry for me when I am gone, both mentally and physically. Hopefully my ashes will be spread in Gods' Country, YellowStone National Park, where I want to be. Whether this blog remains or not only time will tell. You can see I do not post as often, things are begining to mean less to me than they did befor. So while I can say it and have the will to, I bid all those I have known a found farwell and hope I have left something good in your lives. I am not going today, but I need this to get out of me before I forget and do not have the time to do so. Some of my family will read this others won't the same as friends and so on, because they are just caught up in their own lives and mine is not that important in the Grand Scheme of things. Only to me and my Lord.

God Bless You and This Country of Ours!
Joe

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Been Away For A Couple of Days

Sorry thaat I have not keept up with you folks but. The grou I joined I quit. 6000+ emails a day was more than I could even begin to handle, leat alone read or answer. So you are stuck with me. Each day getts a little worse then the day befoe, i sit talking with mmy family and wonder who the hell are these people and why are they arrround me. Then suddenly it dawns on me who they are.= This is becoming a nightmare. I am tire now so will check in with you all later.

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Lost In My World

I started this blog for those with theis disease (A) and other forms of demeeentia. My goal was to keep up daily, but that does not seem tooo work to wel anymore. I have received over 1100 emails in the last , I donot no several weeks and am at a lost to get to mem all. It took me over 3 hours to put a new facet in the kitchen yesterday, had to rest betwwen steps and went off and did other things and forgot what I was doing, but alll ened well, no leaks, what a suprise. I find walking for any length of time with my grandddaughter and playing at the park is causing me great tiredness and loss of where I am at. Good she knows the way home. For some unknown reaason I have even opened an online business, like I have hte time and energy anymore. Oh well, was never considerrred the brightest light bulb in the lamp. Thought before the day disappears I would make this post. Welcom to my world.

God Bless,
Joe

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