I'm thinking back. Kind of amazed at how many metamorphoses (sp?) I've gone through. How many Mom and Dad have gone through.

In 2004, Mom was forgetful. But she was still, by in large, still Mom. Naturally she progressed. Now, she is in an AD unit and has exhibited a lot of hostility and aggression in addition to continued cognitive losses. She was Rx'd Risperadol about 2 weeks ago and that has seemed to help a lot.

Dad has slowly pieced together a more independent life. He seems to have slowly accepted what's happened and is now in a happier place than 2 years ago. However, he has a "friend" now. Not getting into all of that but that's been difficult to accept.

As for me, the first year was the hardest. We no idea what lay ahead. So many unknowns and weekly phone calls with bad news. But we made it through that. And placement. And some kind of acceptance of losing my Mom to the disease and loving the Mom I have now. Think it's right when they say you have to let go of the person you used to know. You get to know and love a new person who needs your help and compassion more than ever.

I also remember how gung-ho I used to be. Was going to write every politician and researcher and blah blah. I hate that I've lost that but I guess I've had to focus more on the task at hand.

And I also think that I was holier than thou on the board many times. That hurt when somebody said it, but I can see now they were right. While I'll always advocate for the patient, now I can see how caring for someone with AD, now matter how much you love them, can wear you thin. Before my Mom was not as progressed and I didn't get it. Now, with her new behaviors, I cannot even imagine taking care of her by myself at home. I would be in the insane asylum.

My respect and awe of caregivers has only increased since 2004. My belief that every caregiver needs outside help (home health care aides) with their most important job has strengthened. My understanding of how difficult getting that help has multiplied. My disgust at a system ill-equipped to handle those suffering with dementia and those who care for them remains solid.

My relationship with my Mom has changed. Instead of it being about what a parent can do for a child, it has become what I can do for her. Although I wish it had never happened this way, I am glad I am less selfish and am a better daughter than I was before.

I always loved my Mom but I took her for granted. Now I know how deep my love for her runs.

My relationship with my father has endured many setbacks and gains. But I suppose the most important part of that sentence is that it has endured.

In February, I will find out if I have been accepted into a nursing program near my parents. Then, more changes are sure to come.

Do you ever feel like you're in a log rolling contest? The ones where you stand on a log and see how long you can stay on the log without falling in the water? I think that's what we're all trying to do - constantly making adjustments to maintain balance and stay above water.

Nothing is constant except change. The trick is to turn that change into something positive and to derive joy out of something each day - even if it feels as hard as getting blood from a turnip. It's now the winter of 2007 and things look gray and barren and dead but they aren't. Spring is just around the corner and the birds will return and everything will turn green again.

It just reminds me that nature and God are my greatest teachers. I just have to go outside and be reminded that the answers are all around me.

And as always, I am grateful for this board and the people who have reached out to help me in immeasurable ways. Don't know what would have happened if I hadn't stumbled upon this site in '04. Luckily I did. I could not have made it through these last years without it.

I could not have made it without you.
I could not have made it without you.

Even in your darkest hour, I hope it gives you comfort to know

I could not have made it without you.

Love and my best to all of you.

Hello Fortune Cookie.....Thanks for sharing these deep loving thoughts with us.....this is almost exactly my story......Mom is 81, and I noticed around 2004 her thought process was really changing....she would not except the amount of change a cashier gave her, usually arguing and I would intercept and move her along, she would call 911 a lot, the last time police were at her apt, they told me, she had called about 9 times, many things were getting kaotic....Im glad she is living with me (since Feb 2006), you are right, we are the parents and they are the children.....although the Risperdal has helped the hallucinations, her right hand tremors and she shifts her weight from one foot to the other, which she did not do a month ago.....yes we have to except them as they are......good or bad, we have to run the race.......again thx for sharing....

ZOEY M

quote:

Originally posted by Fortune Cookie:
Do you ever feel like you're in a log rolling contest? The ones where you stand on a log and see how long you can stay on the log without falling in the water? I think that's what we're all trying to do - constantly making adjustments to maintain balance and stay above water.

Nothing is constant except change. The trick is to turn that change into something positive and to derive joy out of something each day - even if it feels as hard as getting blood from a turnip. It's now the winter of 2007 and things look gray and barren and dead but they aren't. Spring is just around the corner and the birds will return and everything will turn green again.

It just reminds me that nature and God are my greatest teachers. I just have to go outside and be reminded that the answers are all around me.

Words spoken - never truer.
The log keeps rollin and rollin, faster and faster, this way and that.

I'm so glad you posted Fortune Cookie. I think of you as a bud and often wondered how you were.

We have so many similarities -we joined this board at about the same time, have graphic design backgrounds and are secondary caregivers.


I know what you mean about being one way "gung-ho' at the begining and then learning how to pace yourself. I wanted to understand & learn everything about this disease - and then I wanted everyone else (my famly, friends, even people on this board) to understand this disease - and each other - and how and why we respond to it.

And you know what I found out, you can't do that for everyone.
Everyone has to do it for themselves.

I wanted everyone to be nice and understand and be kind to one another. This disease has brought us together, so why can't we work together - strength in numbers - all that stuff.

Well, we're together in dealing with/suffereing through this disease with our loved ones - but we're still separate and indiviualistic - with all the good, the bad and the ugly that that entails.

Some people don't want to know.
Some are afraid to know.
Some don't want to try and understand.
Some people are so wrapped up in their worlds, they don't have the time.

I'm not in control of this disease, this life - I can only try to control how I respond.
And the way things have been constantly changing, I've had to learn to be flexible.

You are right, we could not have made it without youtoo.

Good luck with nursing position (a career change, no?)

I always love reading your posts.

Take care and Peace
Eileen

Thank you both for sharing your similar experiences. Makes us all feel not so alone, huh?

I'm glad your Mom has you with her Zoey. She has a good advocate on her side.

On another note, Eileen, you hit on something else. I remember how every time I met someone new, my Mom's disease came out almost immediately. I too needed everyone to understand. Now, I keep it much closer to my vest. At first I needed to share. Now, it's a more private struggle.

Unless people have gone through it too - they'll never understand or appreciate the situation. We are a group unto ourselves. Only we know what "she gets it" means. And it makes me feel good to talk to someone and they think that I get it because I know how powerful that is.

School has started up again so I may disappear again but I'll always be somewhat closeby. Yes, big career change (yikes!) Another way the disease has affected me. If I hadn't gone through this, I would have never considered nursing or thought I have something to offer that field.

Right now I'm taking pharmacology - looking forward to learning about these drugs Zoey so I won't be so clueless haha.

You both take care.

quote:

Originally posted by Fortune Cookie:
I could not have made it without you.
I could not have made it without you.

Even in your darkest hour, I hope it gives you comfort to know

I could not have made it without you.

Thank you for the lovely post Fortune Cookie, and I want to send those words right back to you. I would not have made it without you.

The changes in my life have been many, as you know, I lost dad soon after joining this forum. I am still caring for mom, I don't know if you remember, but she suffers from a neuromuscular disease that has had her bedridden for 3 years now. She continues to weaken and now has to be lifted on and off the commode. She has been under hospice care for over a year now, her strength of will has been amazing. She started showing signs of dementia early in 2006. I appreciate all that I learned from you and others on this forum, I truly could not have coped without it. Your feistiness was appreciated, it always made me feel like there was someone in my corner. I too have now come to a place of peaceful acceptance. It is an honor to know you FC.

Dear Debbie,
That was sweet. Thank you. I think of you often and am sorry to hear that your mother is needing more care. Declines of any kind - no matter the disease - are disheartening to me.

My feistiness is still there - I just get too tired to use it sometimes. ;-) Maybe I've learned when to use it, when to stuff it. Just don't do it anymore here as it just upsets the board and we need peace & harmony.

Dad got an earload of feistiness when I found about about his "friend." Ugh.

I see some discord still exists on the caregiver board. :-( Hate that but understand it too.

So it's back to schoolwork. Hope to pop in maybe to Musings from time to time. Glad to hear from you.

I LOVE all these quotes, I try to write my favorite ones down, several each day....as I approach Moms 1 yr. living with hubby and I, I think back to when it was very difficult, she would say, If I could go somewhere else I would, not knowing how her sweet confused mind would play with her sadness and steal her joy, you know, the kind where you laugh like a schoolgirl.....when I laugh, she angers easily, so I try not to. But she is feeling more like this really is her home now, I will say....Mom how do you like your beautiful back yard, or wow Mom, isn't it great having a window over your sink, Mom??? I love being outside and can't wait for Spring.....Welcome Home Mom...

Thank you friends for sharing and caring..

ZOEY M

"Be kinder than necessary, for everyone you meet is fighting some kind of battle"