Wednesday, February 07, 2007

I am breaking a promise, I think you will understand.

Yesterday I received an Email from an individual who will remain anonymous, since they sent it through the email form on the side of my page. I responded to this individual, but I think her statement needs to be shown and addressed publicly. I truly thank this person for contacting me. Content of message:

Message = why does everyone try to make it sound so loving and cozy.It is a horrible horrible disease. I'm here to help but not afamilymember and not a professional.
Is there a way to do this perfectly? NO! The stress is unbearable some days, called disgusting names by a woman who doesn't even know i feed her every single day. There is nothing loving or sweet about this situation. And to top it all off, having these
feelings makes me feel like a bad person.So cut the crap about. we're going through this with loving kindness.You must still be in stage 1.

First I say to you, that you are not a BAD PERSON, you are a loving and caring
individual, who is seeing the ravages of this disease. The person you love and care for is not capable of controlling their words, thoughts, deeds and actions. Trust me they know you are there. On my site isthe Alzheimer's prayer, watch it, maybe it may help you. You see my family goes through this daily with me. I am not in stage one, not by along shot. I cannot even remember who they are at times when talking and looking at them. I have days that go by that I cannot remember anything of. My site is to tell of my life, but also to bring some humor to the world as much as I can, because it helps ME. If you read all of my entries, you will see that I have ran stuff ofLew Body's and the Seven Stages of Alzheimer's and plan to run a series on Parkinson's for a dear friend of mind. DEMENTIA kills plain and simple, but first
it robs you of yourself and physical functions before it lets you go. That is not any fun from THIS side or yours. I truly feel for you, but understand your friend is
sick and not responsible for their actions. I hope you do not feel betrayed by me, but continue to contact me. I will do the best I can to help you understand our side of this disease and maybe in doing so show you the great worth and service you are giving. I will go back to not using spell checker, so you know who I am. If you should write me again, you will see me as I am. Till Then,

God Bless You and This Great Country of Ours!
Joe

5 comments:

Marion said...

Well expressed reply, Joe!

I watch my Mom losing touch and forgetting...some days she's who I know and other day's she's someone completely different...on no day is it ever easy, for her or for me.

Dirty Butter said...

The stress of being a care giver is tremedous, whether the person has dementia or not. Mama was easy to handle most of the time, but even she became mean toward the end. Pop, on the other hand, was so agitated and aggressive that we could not keep him at home any longer, but moved him to a nearby Assisted Living home.

It IS a horrible disease, and I think your pain as one who has it comes through your writing loud and clear. It's just that we see you on your lucid days, when you're able to post and make sense. You family seels you on your worst days, too.

Dirty Butter said...

Speaking of spell checker, have you noticed that my typing has improved? I certainly have. The Zelepar is working!!

Meesha said...

Hello sweet joe,
My name is shawnna I saw your sites on parent's wish I cried like a baby over this video. I think one of your visitors that made the post....
Message = why does everyone try to make it sound so loving and cozy.It is a horrible horrible disease. I'm here to help but not afamilymember and not a professional.
Is there a way to do this perfectly? NO! The stress is unbearable some days, called disgusting names by a woman who doesn't even know i feed her every single day. There is nothing loving or sweet about this situation. And to top it all off, having these
feelings makes me feel like a bad person.So cut the crap about. we're going through this with loving kindness.You must still be in stage 1.

she needs to be slapped side ways and her privalege of caring for some one revoked as it is a privalege! I watched both my aunt nancy slip away as well as my grandmother I cherished every waking moment I remembered who they were it only made me sad when they did not remember me not angry just sad... yes it can be scary, and hard but we all need to remember they are still the same loving beautiful caring giving person they were they just don't always remember what is happening around them. I used to hide in my friends garage as his grandad had severe altimers and he would think he was back in the war and chase us down trying to kill the enemy it was extreamly scary but after a while he would cry on his hands and knees because he could not remember where he was why he was there or if he had hurt any one. tears wheled up in my eyes every time I was only 12 then but I still remember and what it was like to see some one go through this. they never took him to a home as back then they would not accept him. so they had to watch him very close the mother quit her job to care for him but even she got scared at times. I know that some day I too will be in this situation and I have seven beautiful children and I can only hope that they grow up to be compasionate caring giving and paitient. I am 29years old now but know that If you raise your children to love god more than all and any thing they will do what is right with happy hearts I am living proof of that! I love my parents dearly my sister is very materialistic, and does not have time for any of us I guess that is my blood fathers genes coming through... But for me I look to the lord in all that I do He is lord over my life and all that I say. God has taken care of me since before I was born. He helped me with my grand mother, my children my once abusive husband and keeping me alive and sain. He will be there for me when My parents need me as I WILL NOT let them be in a home! my husband worked in a home and told me of great horror stories I will never let happen to any of my family! i PRAY THAT gOD WILL KEPP YOU AND WATCH OVER YOU i PRAY THAT HE WILL BLESS YOU IN ALL THAT YOU DO. yOU ARE A BEAUTIFUL MAN AND YOU INSPIRE ME. tHANK YOU FOR HAVING THESE POST AND PLEASE DO NOT EVER think of doing any thing horrible to your self Your grand children are not sad cause you get lost or can't play they are sad because you are sad and can not remember things as they know you want to and can't so they are sad for you not beacause of the things you do or an't do.. Always remember God has a plan for you and right now you are doing his plan by having this site and doing what you can for your family and others going through hard times. when God is ready and your work is done you will be able to go home and the love you will feel is emense It is like nothing you have ever felt you will beg God to keep you and never send you back... I almost died 3 times during delivery and once I swear I was before God I could not see his face but I knew. I fell to my knees and cried for him not to send me back over and over and over I felt the love so powerful I fell flat on my face. it was God people can call me crazy if they want but I am not ashamed to say I was before God! I obviously still had work to do as He gave me an image of my yet to be born son and my two daughters and in that same instant I was awake bleeding all over the place. God has a plan for us all when and if you feel sad or down lonely or just need to talk Email me I am glad to be a shoulder to cry on or an ear to listen or some one to pray with we are all brothers and sisters in christ! Love hugs and prayers always Shawnna.

Lara Belonogoff said...

I think Marion and you, Joe, make good points as the disease affects both the one with it and his/her caregiver. The bittersweet irony becomes that both the person with dementia and the primary caregiver need "care," but in very different ways. I just finished writing a blog post a few days ago about caregiver burnout, which is a very common and real problem. (I work for a company that write reviews of long-term care options along with covering many senior issues.) Keeping the needs of two people in balance is difficult. (Marriage is a good example of this.) And if it is polarized by something like a life-threatening disease then life can feel more about surviving the minutes than enjoying them. Keeping up your spirits—and trying to raise those of others—is one of the best remedies I have found for almost any illness along with keeping realistic expectations of yourself and others.