I am coming to the part of the disease where I am needing a purpose. You see I was turned down for Peer Volunteer because i am not on here often enough according to my yearly posts. If I had been given the position, it would have given me purpose and I would have been here daily. Now it is only when comes to mind. It hurt alittle bit that this whole thing was my idea 2 years ago and I have not even been given chance to be apart of it. I know that I am still a peer, just without the title. I just needed alittle something extra to add to my resume . I do have another purpose and that is my son, but I have come to a point that when he is gone to school I have no other interests, just get my house work done and nap until he comes home. I am becoming less conversation savy to my husband daily and my interest of hobbies have gone out the window. I don't even like to color anymore and I use to love that. I have to force myself to go outside and do things that need to be done. I think that God using me for the purpose of a young one on this journey may be coming to a halt and I am about to enter another phase of the journey. I just hope if that is the case, I have done the first part of the journey well by helping others along the way.

Tracy

Tracy, I read all of your posts when I first came to these boards. You gave me hope, like your name says. Were you the one to suggest Peer Volunteers? You have a very creative mind.

Starting the camp for young people who are affected by dementia--that is so needed by our young onset families. I just referred Red Sox to your posts. There are many people here who need you, Tracy.

Don't worry about "Peer Volunteers". You are still a peer volunteer. You have your mission. Please don't leave us, Tracy!

Iris L.

Tracy,

You have done the first part of this journey very well. And yes, you have helped many people, me being one of them. Thank you for all you still do.

You feel you need a NEW purpose? What about another book?

How is your son doing? is he coping well?

please, keep in touch.

Again, Thanks for all you have done and continue to do.

All of you are right, the title isn't important and I shouldn't let it bother me. I am however lost in knowing what to do besides housework and napping and reading my bible. I do spend time with my son when he is home from school but when he is gone I am so lost. I even have a job volunteering 2 days a week for a couple of hours in a nursing home but I don't even like it and it is hard to make myself stay there. As for writing another book, well that isn't easy any more either because I only write short paragraphs as these posts and that is about my limit.

Tracy

Tracy,

Keep coming on line everyday! We need all the help and advice we can get. Especially the newbies!!

Please, continue to share your journey and answer other people's questions. We need you!

quote:

Originally posted by younghope1:
I am coming to the part of the disease where I am needing a purpose....
You see I was turned down for Peer Volunteer because i am not on here often enough according to my yearly posts. I think that God using me for the purpose of a young one on this journey may be coming to a halt and I am about to enter another phase of the journey. I just hope if that is the case, I have done the first part of the journey well by helping others along the way.

Tracy

Not so fast Younghope! I have no knowlege of the reasoning for the decision but You are a wonderful asset to this community!. You might have explained their reasoning in your last post when you said "As for writing another book, well that isn't easy any more either because I only write short paragraphs as these posts and that is about my limit".

I know that I'm begining to have the same problem. If this problem reaches a time when it starts to bother me, I'll ask to retire. I'll always stay close with the people on this site but in an un-offical way. You started on your journey way before me. They just never had a offical title to give you. Maybe is is time for you to semi offically retire. You will always be the original Peer Volunteer in my mind!
Hope to read more posts from you soon!

Tracy, don't be so hard on yourself. You don't have to be busy all the time.

Spend more time with us. We don't have to be serious all the time. (Is this a poem?)

Iris L.

Tracy-
I understand the statement of "needing a purpose" completely. It sounds to me like you have a great purpose and many other depend on you for some sort of strength. I know I might be able to benefit from some of your insight.
I am a 45 year old woman, just recently (July 2009) diagnosed with EOAD. I've suffered many head injuries throughout my lifetime with the last being a head on collision in 2004. Although I wasn't hospitalized at the time, I was diagnosed and treated for Post Concussive Syndrome. This kept me out of the workplace and at home for almost a year. However, things have just not been "right" since then. So actually I really do not know how far along I am. I feel like I'm broken. I don't really feel depressed, but I feel overwhelmed in a way.

I have always been the "rock" of the family. Now everyone is blown away by my diagnosis. Being a "jack of all trades" I am a Nurse as well and recently had to make the decision to give up practicing professionally. Funny thing is, my favorite type of Nursing was always with demetia and psych patients. Now I think it may be better to not have had the insight that I do have. Maybe I need to find a way to channel that insight. I don't know. My life partner of 23 years is a nurse as well. She is having a hard time with this too. She tries to hide it but I see it. I see the pressure she now feels she is under. And financially she is. However, she has stepped up to the plate in a big way. But her having to work overtime as much as possible is fdifficult too. I am alone alot. She is stressed. SSD would make enough difference that we wouldn't have the financial pressure.

We are making a move back to our hometown to be closer to family and friends. We decided it would be best for me in the long run to be in familiar surroundings as well. I have by no means "given up" to this thing and I do not intend to. I am having trouble with getting started on things though. Like packing for instance. It seems that I become easily overwhelmed. Then when it all seems to much, I want to sleep. Wherever I am, I can sleep. Kind of like my brain taking a break.

I was once the one everbody depended on. Always made the most money, promotions were just a norm and I always had a solution for everything; A type perosnality all the way. My pride has taken a big hit lately. Now I am about to apply for SSD, I did after my accident a couple of times and was turned down. I am afraid the same thing will happen again. So if anyone has any clues as to the proper way to do this....I need some help. I hope I don't get turned down, as I think once the financial strain of me not contributing (all my own hang-up) is over with, it will be easier for me to maybe start something new.

I know that I still have a lot to offer. I would like to write a book, but really do not know where to start. I've been able to pick up a couple of new writing projects on Elance.com. It doesn't pay much but it gives me something to do, occasionally. Please forgive my spelling here, I didn't write this in word first to check it.

So Tracy even though you didn't get that title, your insight, knowledge and wisdom are still needed. Take that and run with it. Maybe we could work on something together. Just don't give up so easily. We all need to find a new purpose. We might need to be reminded of what it is every now and then , but we do have a purpose.

JustCat, First of all, let me welcome you to these message boards. You feel overwhelmed? I have good news for you. You have come to the right place! The members here are 100% committed to helping us all deal with our cognitive/dementia problems.

Having said that, let me inform you that doctors don't know as much as they need to know about dementia. I've been dealing with memory loss and cognitive impairment for over 22 years and I'm just now getting treatment and rehabilitation. My impairment symptoms and issues are similar to those of a person with anoxic/hypoxic brain injury. There are others on this site with a history of brain injury.

Alzheimer's Disease is a diagnosis of exclusion after ruling out other, potentially treatable causes. I'm not saying that you don't have EOAD. But it is most important to investigate every avenue, especially in a person of your age.

You're a nurse so you understand the concept of second and even third opinions from the most experienced person in the case of a serious, life-threatening diagnosis.

Please, Cat, read the information from this site and you will learn what your next steps will be. Read the posts from Mark in Idaho who also suffers from TBI.

I was a pediatrician in my other life. There are many health care people here.

The people here want to get to know you and want to help. Please come back and let us know more about yourself. Join us in the chat room in the evenings. There is a room especially for us patients.

Iris L.

Teacy I don't have a specific porpouse but I have things i enjoy like feeding the ctritters at our local lake,vist with friends from time to time,write to my kids in Mo.
I have a new family of sorts they are cousins I didn't know i even had,we contact each other often.....
I love eating out as I rarely cook anymore.I'm on 02 24/7 now & can't stand for very long at a time.I have a fancy walker & love it & when I'm tired I sit down wherever I'm at......
Love going to WalMart just to look even if i don't buy anything,LOL,yeah right.......I always get something.......
I now want to get some Sun,Moon & Stars perfume I love the stuff......It's pricy but i'm worth it............We miss you at the DASNI chats.......

Dear Cats,

Hello and Welcome to the AD Message Boards. I'm sorry for what brings your here but I am glad you've found us.

Your story sounds familiar. RN, yes, type A, yes, Head of family, yes, head trauma and EOAD yes! We sound very much alike. Do get several opinions on your Memory Loss. The key to your hearings is to get some good docs on your side! After all, you're telling the truth! Get them to go to bat for you. You deserve your SSDI !!!!

Good Luck. Please, come back and let us know how you are doing. You should contact your local AD Assn for help/guidance. To find your local chapter please go to the bottom of this page and click on "Chapters" and follow the directions. You may, also, want to join a support group.

Good Luck!

Dear Cats: Welcome to this wonderful Online Community. We are so glad to have you here amongst us and you will find much support.

I am an RN whose mother had FrontoTemporal Dementia and whose step-father has Alzheimer's Disease. As Lisa has mentioned, there are quite a few health care workers in this Online Community.

You and your partner are facing unexpected challenges and you are both to be commended for being proactive and taking steps to deal with what comes your way.

You will get much input from folks here and you can write as much a you wish.

So, welcome once again. Let us know how you are, we will be thinking of you.

Johanna C.