Life after being caregiver

[pamster42000]

As you probley know by know my daughter, Sarah passed away Oct. 1, 2007, from complications of ESRD. My other  two children have grown and are their own and I am single now. I have a full time job working in a nursing home, usually I pick up overtime to make the paycheck better and I don't really just want to sit at home.

I was used of the caregiver role with my daughter. I have looked back on old calendars (2005 - 2007 ) and most days were filled with dialysis treatments, Dr. appointments, hospital stays and emergency room visits. I'm not conplaining because I would do it again. It just seems now that Sarah has gone to heaven, at times like now, I don't know what to do with my time. I have most my household and yardwork done and it is now 4:40 p.m and as it works out I also have tomarrow off of work. I wish you guys lived where I do and I could help you out.

I watch my grandson, Logan when ever I can...sometimes I call and ask if I can watch him. He is almost two, so he keeps a person busy

Don't really know why I'm writing this post....guess I'm just making an observation of my life now.

[Hanify]

Oh my gosh Pam, I can imagine how you feel.  If all this dialysis and other stuff was suddenly taken away (I can hope for a miracle) I wouldn't know what to do with my spare time.  It must be very strange.  This is an issue for lots of people as their children get older and move on - but you have the added burden of having lost your daughter too.  So it's understandable if it's difficult.  Do you have any ideas for groups you could join?  That might be a good way to bring a new thing into your spare time.  Is there a local musical theatre group, or non musical theatre, or something else you might be interested in?  A hobby of some kind.  Thinking of you as always.

[okarol]

Since Jenna's transplant I have been working toward letting go more and more. Being her caretaker (healthwise) was a full time job when she was on dialysis and looking for a donor. It becomes part of your everyday life and now that she doesn't need as much I have to back off, and even push her to be more independent. That's why I volunteer here and on Living Donors Online - it keeps me involved but not managing Jenna's life.

Pam - I cannot imagine coping with what you've been through. I hope you find something creative and rewarding to do. If you think you'd ever like to get involved with something, I know they always need help with the Renal Support Network, either with their helpline or the Teen Prom. There are plenty of things to be done online - you don't have to be at the headquarters in California. You've got so much knowledge from years of caring for Sarah that I am sure you'd be great support for another mom who is on the same path.

[The Wife]

I don't know what to say but I do want to give you a hug.

My heart goes out to you.

 

[pamster42000]

When Sarah graduated from high school  in 2000 she did move out and was on her own. Just when she started circuming to ERSD in late 2005 is when I started to be a caregiver again. I'm glad she had that period of independence. We were always moderalty close by, aprox. 30 miles driving distances.

I don't mean to make you guys concerned about my welfare. I am coping with her death but the only connection I have with this group is through Sarah.

[pamster42000]

I think the main reason I talk about Sarah is I don't want her to be forgotten. I want to let people know she was here and was important to us.

[paris]

Pam, please keep posting about Sarah. I love hearing about her.  She graduated a year before my daughter and my mind can't even comprehend what you have lived through.  She won't be forgotten because she has a mother who lives to tell her story.  And we are all here to celebrate her life with you.  I would love to see more pictures.   Mother to mother, I think you are doing an amazing job of moving forward but also honoring the lovely girl Sarah was.      

[willowtreewren]

Pam,
I agree with Paris. Please keep sharing.

Aleta

[rose1999]

Pam have you thought about writing a book about Sarah, it would keep her memory alive and give support and help to other young people (and their families) who find themselves in her position.  It could also help inform the general public about dialysis as I'm sure that those who have no connection with it really have no idea what it's all about.  Maybe it would lead to more organ donations (living or dead).  Even if it does none of this it would fill your time and be a tribute to your beautiful daughter.

[pamster42000]

Thanks for your replies and suggestions.

This week-end I am going on a camping trip with my daughter, Savannah and family. I am sure looking forward to it. Haven't had a getaway in quite a few years.  I actually took off time from work!

Actually one time when Sarah was young I did start writing a book for young kids starting dialysis, but never completed it. What I started is long gone...but it is still is a good idea.

I will keep in mind about The Renal Support Group...how do I go about joining it?

Thanks for your support!

[Inara]

I love reading your stories about Sarah.  Please keep sharing.  I told my daughter (she's 16) about her last night and made her promise to never forget her.  It made me realize how blessed I was to able to hold my baby and kiss her goodnight.  Your daughter has touched my heart as a mother, and that means a lot. 

[monrein]

I too enjoy hearing about Sarah and the truth Pam is that many of us are in the position of saying to ourselves, as we read about her, "that could so easily have been me"!

[okarol]

I will keep in mind about The Renal Support Group...how do I go about joining it?

You can learn more at www.RSNHope.org - but I also sent you a PM.

[cariad]

Hi Pam,

Yes, I agree with the others, I love hearing about Sarah. I wish I could have met her. She and I would have had looooaaaads to talk about.

Have a great time on your camping trip! 

[greco02]

A long time ago I met a nurse who worked in a surgical dept.   She had an older special needs patient who didn't understand his upcoming procedure.   She designed a booklet especially for him with lots of pictures and simple explanations.  Then she made sure she read it to him so he understood.   Maybe you could create a booklet with a Dialysis/Kidney patient named Sarah.   Use the booklet to explain in children's terms what may happen during different procedures or during different bouts with kidney related illness.  It could be something a pediatric neph group might want to have for their patients to see and read.  Good luck.

[petey]

I think all of the suggestions listed in this thread for Pam are good ones.  But, I would like to add my suggestion, too.  This is going to be hard for me to write, so bear with me if I stumble around and don't make much sense...

Pam,
There is obviously a lot that you have to share with other caregivers, too.  There are many of us who find our lives consumed with the care of a loved one, and, like you, we may one day find ourselves left without that special someone. 

For me, it's my husband Marvin.  For 14 1/2 years as he's been struggling with ESRD and dialysis, I've been involved (okay, obsessed is more like it) with his care, his health, his treatments, his surgeries, his medical appointments, his medicines, and researching ways to make his health and his everyday life the best it can be given the circumstances.  I realize (though I don't like to think about it), that the chances are good that I will one day have to live without him.  First and foremost, I will be lost simply when I'm forced to live on with Marvin.  But, also, I will be even more lost because my role as a caregiver will be over.  I know that sounds kind of strange, but I spend every minute of every waking day thinking about Marvin and what I can do to make his life easier and better.  Marvin's my whole life, and (for better or worse), his health and his dialysis are a big part of both of our lives.

Like Okarol, I've found myself letting go a little of the intense care I give Marvin.  When he first went on dialysis, I watched his every breath (well, not literally, but you know what I mean -- and sometimes, yes, it was literally).  When he got his transplant, I backed off some and didn't smother him as much.  Then, when he went back on dialysis, I was right there smothering him.  (And before I'm chastised for using the term "smothering," let me say that it was like I had to make sure he got down the steps, I walked in front of him to make sure he didn't step in a hole or stumble on the curb, I reminded him to take his meds every  morning and every night, that kind of things.  And, lest you chastise Marvin for being weak, he never has seen it as "smothering."  He says I'm just "overly protective and attentive" to him).  When he started on home hemo and felt so much better, I backed off again.  I try to let him do as much as he wants to do and feels like he can do, and that level has fluctuated for him a lot during the years.

Okay, I'm rambling now.  Back to Pam...you are walking the road that I will one day have to walk, too.  By sharing now, you will help me get down the same path.  There must be things that you can tell me that will make my trip a little easier -- or at least your experiences will help me be prepared for where I'm going.  And while it may be hard for you now, by sharing you can help someone else -- like me.

[Jean]

The shock of realizing you are no longer a caregiver, and the one you cared for is gone, did not hit me until about 4 months after my husbands passing, when I needed a new toothbrush and realized I only had to buy one. About that same time, I realized I did not have to rush home from work to take care of him, and I felt as you did, that my life had suddenly stopped. If you have girlfriends, try to make a special movie night, take up line dancing, maybe become a volunteer at a hospital or even a dialysis center. Spend more time with your daughter , plan to write that book about Sarah, and do come back often to visit with us, we are still your family and friends. And, always will be.

[Romona]

  Sara was so lucky to have a Mom like you. I love her picture. Her smile says so much.

[pamster42000]

Sarah's second death anniversary is coming up Oct. 1. I know re-reading that is kinda a weird thing to post. I'm at the point now where I still miss her greatly, but I realize death is a part of life and I appreciate having her in my life for 25 years. Still dream about her. I never want to get to to the point where I forget what she looked like, her smile etc.

Her sister, Savannah and I were garage saling the other day and there was a picture of a leopard which we both seen separately. After leaving the sale both of us mentioned that you know Sarah would of bought that. She will live on forever in our memories.

Savannah shows her son, Logan  (age 2) a picture of Sarah and he knows her name. She also informs people Logan has two aunts, which happens both are named Sarah.

[willowtreewren]

Thank you, Pam.

When I read through this whole thread again, what Petey said really resonated. You are helping all of us while you keep Sarah alive in your memory.

I will be thinking of you on October 1.

 

Aleta

[pamster42000]

Petey,

I know what you mean by watching every breathe. There were times were I just sat there and watched to make sure she was breathing. Sarah had this habit of crossing her arms across her chest ( like people are posed in the funeral home) and it always gave me the willies when she was sleeping. Sometimes she would breathe really slowly and I would have to look a second time to make sure.

Actually that's how I found her that morning, with her arms crossed, but this time she wasn't breathing. Went to get her for dialysis and she didn't answer when I knocked on her door.
At first I thought she overslept, but she never did that. Started CPR because even with all the problems she had I am 99 % sure that is what she would have wanted me to do. She had a strong will to live.

I am glad if she had to die it was at her home, not in a hospital. She spent alot of her life in hospitals. It appears to me she passed away in her sleep with no drama, pain or no one telling her which test she would have to endure at the hospital.

[RichardMEL]

Pam.... I just stumbled across this thread - I must have missed it when you first posted. For some reason it brings tears to my eyes - I see the picture and Sarah was a beautiful girl, and I can't imagine your feelings - specially as the next week approaches with the anniversary. I don't really have anything much I can say except I send you *hugs* from the bottom of my heart.

 

[pamster42000]

In loving memory of Sarah Rose Meyer
5-13-1982- 10-1-2007

[pelagia]

Thank you for sharing your story about your relationship with your beautiful daughter and for giving us insight into the power of love. 

[willowtreewren]

Pam,

My thoughts will be with you tomorrow on the anniversary of Sarah's death. You have made a long journey over the past two years. I'm so glad that you brought Sarah to us, even while mourning her loss.

 

Aleta