I set here my mind racing in utter fatigue wondering what today will bring. Just got my son off to school and now it is me and the house chores for about an hour until I leave for volunteering at the local nursing home for a couple of hours. Then it is back home to finish where I left off if the energy is there. My mind is tired, my body is tired and I have yet to begin, all just rambling thoughts of what is to be. Maybe I am tired of doing the same monotanous things over for so many years, could that be it? Or maybe the disease is starting to get ahead of me in the race. Whatever it is, it is taking my conversation ability as well as any hobbies of enjoyment that were always dear to me away. How long can a person struggle like this? From what I know it can be years or if you are lucky it will only be a short time. But wait, I have a 15 year old! He knows that he is losing me as I saw written in one of his freshmen english papers. That broke my heart. He isn't ready for me to go and neither am I. I have to fix this, it just isn't right, but what can I do, I don;t have a choice. Is time slowly calling me or am I tired and giving in? I would never give up on my son, so it has to be time. I have much yet left to do, I have to be here for him and watch him grow up as he is a young man but yet still a boy in many ways. Please Father, give me the strength to carry on as I am not ready nor willing as I have yet too much to do.

Tracy

Tracy,
What is hyappening over at Camp Building Bridges?

Hi Tom, Camp Building Bridges has now been completely 100% adopted by the Oklahoma/Arkansas Chapter. My only duty is to speak on opening day and get my son there and back.

Tracy

That is right, I remember reading that now. Good remembering Tracy! Do they need a volunteer?

To Tracy, Red Sox, and all EOAD parents and families: Your situations in dealing with this illness as parents of children and teens is heartbreaking. I'm going to take a chance and make a suggestion for you although I'm not in your situation because I don't have children at home.

Oprah had a show several years ago about a woman who was dying of cancer. She had made videos for her children. After she passed, Oprah asked her daughter, who was about 8 or 9 years old, what was her best memory of her mother. The daughter replied, the time we ate Cherrios (in bed with her sick mom). What I got out of this was that just spending small bits of time doing the most ordinary, mundane activities with their parents, is so important to children.

Spend time with your kids. Listen to them recite their homework. Bake cookies. Let them read the recipe and pour out the ingredients. Let them read you a bed-time story.

None of us know how much time we have left. Whatever it is, we can use it to make memories.

Iris L.

To Lisa, tTom, Tracy (younghope1), Iris, Alan, and any others I've read but can't think of right now:

I want to say thank you so much for posting all of your thoughts, ideas, suggestions, feelings, and pouring out your life.

I don't know if you you have any way of knowing how much you have opened my eyes.

The worst part of this disease is that I have lost my best friend. He is still physically here, but emotionally, he is gone, and mentally, he is deteriorating. When I try to talk to him, like we used to, I never know who I'm going to get. Am I going to get blank stares or defensive replies? Either way, it's not productive, so we rarely talk like spouses should, except to make small talk.

What I never got was how he was feeling, because he could just never verbalize it rationally, so I missed out on that.
As he has lost his independence, I could only imagine how that would make him feel, but his responses (strike that, rather the diseases responses) made it difficult to understand.

What you all have done is opened a window into the inside of this disease from the person who is experiencing it on the inside, for those of us lost on the outside trying to look in.

Thank you. Thank you. Thank you.

'Keep on loving each other as brothers and sisters. Don't forget to show hospitality to strangers, for some who have done this have entertained angels without realizing it!'
--Hebrews 13:1-2

DSM, have you tried emailing, or instant messaging, with your loved one?

The reason I ask is because we often can write/type our thoughts and feelings out way, way better than we can talk.

Dear DSM,

Thank you for your kind words about all of us. I am glad it had helped you a little.

I am sorry for your sadness and your loneliness. I do know what it's like to loose someone close to you. My husband died of cancer many years ago and he shut me out. It was very hard.

You may want to consider Alan's suggestion about instant messaging with your loved one! Sometimes, words typed in short sentences allows us to understand and then reciprocate.

Please, don't give up!

Tracy,

As one Mom to another, it's NOT time to give up! You son needs you! There's still a lot you can teach him!

Hang in there, please.

Thinking of you.

Dearest Tracy: I think of you so often and wonder how things are going at home with you and your family. Thank you for writing to share this with us. I am sorry that things have hit a slump.

You have always inspired us and everyone has the greatest respect for your marvelous spirit. You are an amazing example to all.

Everyone goes through "down times" and negative times, I hope this is all that is happening for you and it soon will settle out. Perhaps this is a temporary adjustment period which will soon get back onto even ground.

Tracy, could you be a bit fatigued? Do you need to treat yourself to some "me only" time for awhile? Just a thought. Sometimes when we push ourselves or are so busy, we don't realize we are over doing it and fatigue sets in affecting us physically, mentally and spiritually.

You have been given great input from the folks here. I do like the idea of writing thoughts. I also am a believer of small shared moments. They seem inconsequential at the time, yet make such a large impact.

Your son is fifteen! Oh my goodness, he is growing so fast. He sounds like a very thoughtful person and it is wonderful he is able to write to share his thoughts and feelings. But of course, this marvelous young man has an amazing mother, so we are not surprised at his deep thoughtfulness. Good kid.

We are all here for you and always will be. Please let us know how you personally are doing this week.

I send you soft hugs and positive thoughts,

Johanna C.

Tracy
I know it saddened you (and of course it would) that your son wrote about how much he misses you, but I'm so impressed that he's not holding it in, that he's learned how to share his feelings and let others understand.

You've raised a wonderful young man. So many high school students shut down and put up a mask around their emotions...

Be proud of yourself that you've helped him to be an authentic, honest human being.

(I love the eating cheerios story. I once taught in a wealthy school district where first graders had already traveled the world with their parents. Asked for the best moment of their summer-- one drew herself at the local Dairy Queen with her family)

Thanks to everyone for your thoughts, ideas and most of all caring enough to respond. I think the nursing home was really depressing me. I planned on going in and quitting last thursday and was met at the door by a couple of residents saying, "we are so glad that you are here, we miss you when you are not." I think the Good Lord has another plan for me. So, I couldn't quit but I did tell the supervisor that I could only do 1 day a week because I thought it was causing some depression. I am working on the decorative fly swaters, that keeps my mind busy and I see my psychiatrist this coming Wednesday, maybe he can help with something for depression or something.

Tracy

Tracy,

Nursing homes can be very depressing. Perhaps volunteer at something else??

Hope your shrink has some good ideas about meds.

Thinking of you.

I cut back to 1 day a week at the nursing home and am working & staying busy on the decorative fly swatters, they are selling really well on other support group sites. Too bad I am not allowed to advertise them here. I saw my psych and told him I was feeling alittle depressed and he said part of it was season he thought. More people just become depressed this time of the year. He didn't want to put me on any meds for it just yet, he wanted to wait and see if it got any worse and if so then we would know it was true depression and then he would put me on something for it. Hope that makes sense.

Tracy

Dear Tracy,

Glad you saw your shrink. I'm not sure about the seasonal depression thing, perhaps he/she means holiday season??

Try to stay busy and keep active. Don't isolate.

Thinking of you.

Tracy ask your psych about getting a light box. Try to eat breakfast in the morning sunlight.

Iris L.