I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: pamster42000 on July 13, 2009, 02:57:28 PM

Title: Life after being caregiver
Post by: pamster42000 on July 13, 2009, 02:57:28 PM
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.
Title: Re: Life after being caregiver
Post by: Hanify on July 13, 2009, 03:36:35 PM
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.
Title: Re: Life after being caregiver
Post by: okarol on July 13, 2009, 04:31:43 PM

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.
Title: Re: Life after being caregiver
Post by: The Wife on July 13, 2009, 04:45:31 PM
I don't know what to say but I do want to give you a hug.

My heart goes out to you.

 :cuddle;
Title: Re: Life after being caregiver
Post by: pamster42000 on July 13, 2009, 05:09:00 PM
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.
Title: Re: Life after being caregiver
Post by: pamster42000 on July 13, 2009, 05:27:18 PM
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.
Title: Re: Life after being caregiver
Post by: paris on July 13, 2009, 06:17:03 PM
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.   :cuddle;   :cuddle;
Title: Re: Life after being caregiver
Post by: willowtreewren on July 13, 2009, 06:20:33 PM
Pam,
I agree with Paris. Please keep sharing.

Aleta
Title: Re: Life after being caregiver
Post by: rose1999 on July 13, 2009, 11:28:22 PM
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.
Title: Re: Life after being caregiver
Post by: pamster42000 on July 15, 2009, 07:32:44 PM
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!

Title: Re: Life after being caregiver
Post by: Inara on July 16, 2009, 10:39:56 AM
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. 
Title: Re: Life after being caregiver
Post by: monrein on July 16, 2009, 10:59:21 AM
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"!
Title: Re: Life after being caregiver
Post by: okarol on July 16, 2009, 12:25:15 PM


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.
Title: Re: Life after being caregiver
Post by: cariad on July 16, 2009, 12:51:09 PM
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!  :flower;
Title: Writing a book
Post by: greco02 on July 16, 2009, 02:09:04 PM
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.
Title: Re: Life after being caregiver
Post by: petey on July 24, 2009, 07:26:56 PM
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.
Title: Re: Life after being caregiver
Post by: Jean on July 24, 2009, 07:45:26 PM
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.
Title: Re: Life after being caregiver
Post by: Romona on July 24, 2009, 08:02:56 PM
 :grouphug; Sara was so lucky to have a Mom like you. I love her picture. Her smile says so much.
Title: Re: Life after being caregiver
Post by: pamster42000 on September 22, 2009, 05:10:15 PM
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.
Title: Re: Life after being caregiver
Post by: willowtreewren on September 22, 2009, 05:33:48 PM
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.

 :grouphug; :grouphug;

Aleta
Title: Re: Life after being caregiver
Post by: pamster42000 on September 22, 2009, 06:08:22 PM
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.
Title: Re: Life after being caregiver
Post by: RichardMEL on September 22, 2009, 06:58:22 PM
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.

 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
Title: Re: Life after being caregiver
Post by: pamster42000 on September 30, 2009, 04:15:46 PM
In loving memory of Sarah Rose Meyer
5-13-1982- 10-1-2007
Title: Re: Life after being caregiver
Post by: pelagia on September 30, 2009, 04:49:05 PM
Thank you for sharing your story about your relationship with your beautiful daughter and for giving us insight into the power of love.  :flower;
Title: Re: Life after being caregiver
Post by: willowtreewren on September 30, 2009, 04:54:21 PM
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.

 :grouphug; :grouphug;

Aleta
Title: Re: Life after being caregiver
Post by: glitter on September 30, 2009, 05:22:31 PM
I will be thinking of you both tomorrow. Your daughter was so very lovely, and anytime you want to tell us more about her- I would love to hear her stories...and yours, being a caregiver is so hard when they leave us.  :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :cuddle;

I can't stop coming here myself, even though my husband is gone now...it just makes it feel like he is close.
Title: Re: Life after being caregiver
Post by: Hanify on September 30, 2009, 05:24:57 PM
Thinking of you Pam on the 1st.  As always.
Title: Re: Life after being caregiver
Post by: petey on September 30, 2009, 05:44:16 PM
I'm sending peaceful, loving vibes your way tomorrow, Pam!  I hope your day is filled with all the good memories you shared with your beautiful daughter.
Title: Re: Life after being caregiver
Post by: pamster42000 on October 01, 2009, 07:07:09 AM
Well I made it through another milestone. Last year I was by myself and got really sad. This year  my grandson, Logan stayed overnight and that made a world of difference. Just goes to show that family support goes a long way in any situation. This afternoon my daughter, Savannah and I are going to Sarah's gravesite to mark this occasion. For some reason I have this feeling of inner peace. Not saying that I don't miss her..it's just knowing she is no longer in pain.
Title: Re: Life after being caregiver
Post by: Des on October 01, 2009, 07:37:14 AM
warm and fuzzy hugs....

The pain will NEVER go away.... but you will somehow learn to live with it.

I am thinking of you.

   
Title: Re: Life after being caregiver
Post by: willowtreewren on October 01, 2009, 11:00:16 AM
Pam,

 :grouphug; :grouphug;

Thinking of you and Sarah.

 :flower; :flower;
Title: Re: Life after being caregiver
Post by: pamster42000 on October 15, 2009, 03:16:10 PM
I would like to  keep this post going probley because of my own personal reasons.....but I figure in this group that is a good enough reason.

You have been a wonderful support to me and for that I thank you from the bottom of my heart.I just hope I have helped someone along the way through their own personal journey. It's just nice to have a place to go when times are trying or even when you have good news. Just wish I would have known of this group when Sarah was alive. I know she would of joined and gotten support from you.
Title: Re: Life after being caregiver
Post by: paris on October 15, 2009, 03:24:09 PM
I love your posts about Sarah.  Please keep posting. You are helping many people here.  And posting for your own personal reasons is good enough.   :thumbup;      It is good to have that sweet grandson to help heal your heart.  Looking forward to talking more in chat!   Take care Pam.   :cuddle;
Title: Re: Life after being caregiver
Post by: okarol on October 15, 2009, 04:47:22 PM

Hi Pam,
I follow your posts closely. Jenna is healthy now, her kidney is working great, but I know nothing is forever. I appreciate you sharing your journey through your life dealing with your role as a caregiver, and through the loss of Sarah. Lots of hugs for you always.  :cuddle;
Title: Re: Life after being caregiver
Post by: pamster42000 on October 15, 2009, 04:59:30 PM

Hi Pam,
I follow your posts closely. Jenna is healthy now, her kidney is working great, but I know nothing is forever. I appreciate you sharing your journey through your life dealing with your role as a caregiver, and through the loss of Sarah. Lots of hugs for you always.  :cuddle;
I am glad everything is going well for Jenna!  I hope it continues to be that way.What a wonderful feeling....Each person's experince with kidney disease is different. You are informed of issues and I am certain your daughter is in good hands. Just continue what you are doing. Just showing support means alot!
Title: Re: Life after being caregiver
Post by: tyefly on October 15, 2009, 05:04:56 PM
Pam    I didnt know your story...but went back to read your post from the beginning......   I am sorry for your loss...... I cant imagine....  I have a daughter who name is Sara  and I think she is the sweet thing in the whole world......  the words leave me thinking about what you and your daughter Sarah  have gone thru.......     You have lots of good advice in your post.......thx for sharing........kathy
Title: Re: Life after being caregiver
Post by: pamster42000 on October 19, 2009, 04:39:40 PM
Went to Omaha this week-end with the kids (my daughter, Savannah, her husband Eric and Logan). Stayed overnight and had a wonderful time.

It brought up alot of memories of Sarah because that is were her transplant center was and we spent alot time in the hospital there. Savannah and I mentioned Sarah quit a bit.

Now I figure I have new memories to add to the Omaha experience.  :)
Title: Re: Life after being caregiver
Post by: pamster42000 on November 11, 2009, 05:14:44 PM
With the passing of Michelle just brings up memories of the sadness and empiness I felt when Sarah passed away. How I feel for her family. She had so much compassion! You could sense this in her posts. I am hoping Michelle and Sarah meet up in heaven and I know they would be instant friends.

In loving memory of Sarah and Michelle.
Title: Re: Life after being caregiver
Post by: willowtreewren on November 11, 2009, 05:28:22 PM
Thank you, Pam.

Michelle was very special to me, and this has been a sad time for me. I have had to carry on "as usual" but I find myself contemplating at odd moments her premature death.

My personal commitment to honor Michelle is to be strong in fighting against my own bouts of depression, never so severe as hers. It is my way to ensure that her fight will not have been in vain.

I continue to admire you and your willingness to share about Sarah. Thanks.
Title: Re: Life after being caregiver
Post by: pamster42000 on November 15, 2009, 05:40:45 AM
Sarah's friends are remarkable....Denny has named his daughter Sarah Rose  and Ryan named his daughter, Kennedy Rose, in memory of Sarah.

Ryan wanted to be her living donor in 2005. He was a very close match, except for Sarah's high antibodies.

These guys hold a very special place in my heart.
Title: Re: Life after being caregiver
Post by: paris on November 15, 2009, 10:36:40 AM
Such a wonderful way to honor Sarah.  She lives on in these two precious babies.  It shows what an impact Sarah had on peoples lives and how loved she was.  Thank you for sharing the pictures of the babies.   :cuddle;
Title: Re: Life after being caregiver
Post by: javaseuf on November 19, 2009, 07:34:32 PM
Having cared for my daughter for 21 years and now having her start dialysis with no hope for a transplant, life has become overwhelming. My favorite phrase now is "I am at the end of my rope so get me a longer one so I can hang myself".
Of course, I will never check-out before Jennifer but have thought when that time comes, joining her.
Even with all of the trials, hospitalizations, operations, life-style changes, long nights, and emergency room visits,
I wouldn't have traded any time with Jen, no matter how tough on me.
Jennifer has taught me to be a better person, has changed my views on the death penalty, and has brought me invaluable wealth as a human being. I have learned that my very worse day is 100% better than Jennifer's best day. Although Jennifer has never spoken a word for 20 years, she is an amazing teacher!

Yes, when Jen is gone, life will go on but most of life as I have known it will have ended and that is the hardest part for me to grasp. And even with all of the pain these past 21 years, I will miss that to because that pain was out of love.
I never thought that my heart could be broken any more than it has but the day will come when it will break one more time for dear Jennifer.

Life after care-giving? Can't imagine.
Title: Re: Life after being caregiver
Post by: pamster42000 on November 22, 2009, 07:53:29 AM
I remember numerous times when Sarah was hospitalized and seeing other young children who had conditions worse than her's. It makes you humble and makes you appreciate life. If these children can battle life threatening issues and still smile when they see you...what room do I have to complain about my little ole problems. People at work often comment on how I never complain about anything. It's just what they have issues with to me are minor irrations in life, something to shrug off and say whats the big deal.

One of the reasons I wanted Sarah to go to summer camp for children with kidney problems\transplants and The Transplant Games was to show her she wasn't the only one with health problems and  to broaden her view, we lived in a small town and if you ever lived in a small town you know what I'm talking about. She did have a wonderful group of friends that supported her, but I felt she needed friends that had the same health issues as her also. She never really said anything but she did make friends at camp\games and kept in contact with them.

Title: Re: Life after being caregiver
Post by: Mimi on November 22, 2009, 11:46:21 PM
I was caregiver to my Mother after she had a stroke that left her in a wheelchair and unable to care for herself.  For 15 months I did everything for
her, feed her, bathe her, put her to bed, get her up, get her on and off the potty chair.  Tho timewise that doesn't even begin to compare with you who have cared for your loved ones with ESRD, I do know how you feel.  I was
an only child and was very close to my parents (we lost my Father at age 55 of a massive heart attack.)  When my Mother died my children and I stood by her bed touching her and telling her we loved her.  Afterwards I felt so lonely and I kept thinking now I am an orphan.  I had a really rough time for
a long time after she passed on.  I grieved for her for it was like a baby had been removed from arms.  Even now, 18 years later, I wish sometimes I could just talk to her.  It was a long time, but I finally began to live again and
to remember the golden times we had together.  So will you as caregivers to your loved ones.  Time finally heals the terrible pain, but it doesn't remove the memories.  They live on within your heart and you will finally find something to do that will leave you feeling rewarded and willing to go on with your life.  It isn't easy, life is hard, and it is not fair at all, but the time will come when you will settle down with the memories and look forward to meeting your beloved's in Heaven.

I pray the Lord gives you all strength and courage for the long journey. 
Title: Re: Life after being caregiver
Post by: Malibu on November 24, 2009, 11:12:29 AM
pamster, I am just so moved by your story.  Every time I read about it I cry.  I am a caregiver too, that is why I am comfortable telling you this, I know you understand.  I just cannot imagine losing my loved one but I am sure it is going to happen. 

I have not been an independent person in the past but I've had to become one very quickly.  I forgot since MM was sick last time that I all of a sudden had to do everything in the house myself.  The first time we could not afford to have someone mow our lawn so I did it.  Thank goodness we can afford it now (but probably not for long because neither of us have a job!)  Anyway the point is that I've had to become independent all of a sudden and it is strange. 

Well, thank you for continuing to share your story.
Title: Re: Life after being caregiver
Post by: dwcrawford on November 24, 2009, 11:21:47 AM
Pamster, you are amazing.  I'm so glad I've come to know you a little anyway in the chatrooms.  You always make then special with your positive outlook on the world.  Thank you.
Title: Re: Life after being caregiver
Post by: tubes on November 24, 2009, 12:03:03 PM
Hi Pam, Thank you for sharing your stories of Sarah. I am so very sorry for your loss.
Reading through your posts, got me thinking of my mother. I cant imagine what my family has gone through for me. When I was 21 my grandparents were thrown into the caregiver role. I moved to Ks and moved in with them. They were incredible and were my support system for 8 yrs. Then I moved back to Omaha and lived with my mom for a yr. and now Im on my own again. (about 6 months) Just a 10 minute drive from my mom.
Being in the hospital, my mom was right there. Whether I was in Ks or Ne my mom was right there by myside. I'm very lucky to have her as Sarah was with you. Sometimes I wish my mom would come on here. I know she would benefit. I know she'd have stories to tell that have slipped my mind.  ;)

Take care Pam,
Robert
Title: Re: Life after being caregiver
Post by: pamster42000 on December 01, 2009, 07:29:35 PM
The holidays are a time when you miss a family member who has passed away the most. I always burn a candle in the center of the table just to have a sense of Sarah being present.

At our Thanksgiving family gathering my sister-in-law mentioned Sarah and that meant alot to me.

Just treasure the memories and enjoy the holidays. I know Sarah would want us to continue along lifes path and to know she is at peace.
Title: Re: Life after being caregiver
Post by: willowtreewren on December 01, 2009, 07:36:16 PM
 :grouphug;
Title: Re: Life after being caregiver
Post by: boswife on December 13, 2009, 08:39:29 PM
well well, well.  I hadnt come to this section of the board yet as i was always busy reading of how to 'fix' something for my husband.  This is so moving, and inspiring, and i dont know what to say except thanks to you all for sharing your stories.  I am right there with you in heart.  I felt like I was the only one who could love my 'loved one' so very much, and feel as i do about my worries.  Im not alone. You are all here with me... It's good, sad, and reasuring..  Im glad your here and glad you shared.  Thank each of you.. 
Wife to my dear hubby who i will continue to "obsess" over as long as God gives me.
Title: Re: Life after being caregiver
Post by: pamster42000 on December 13, 2009, 10:37:53 PM
In loving memory of IHD members  and family members who have passed away this year:

YouTube-My First Christmas In Heaven Australian Country Music
http://www.youtube.com/watch?v=Ef2w6wY-1s4
Title: Re: Life after being caregiver
Post by: pamster42000 on December 21, 2009, 04:35:18 PM
I posted this Dec. 14 and nobody responded....is it that  depressing......I thought it was showing respect ....I thought of Sarah when I first heard it
Title: Re: Life after being caregiver
Post by: boswife on December 21, 2009, 05:19:15 PM
oh mom of Sarah, i will give my explanation through shaking hands..  Im in such a 'place' in life that i am afraid to venture to 'places' that will take me to a depth im afraid i cant handle.  I am moved deeply by music and then knowing your heart and loss, i feard i would be too sad.  I think thats wrong of me, but its like i cant take much these days so i was afraid to listen.  What may help, at least me, would be that ifi know it's even a bit uplifting, and reasuring, crying is ok if it has a light at the end.  But if its just a sad missing or something, i just cant risk it. Ya know what dear "mom" im going to go listen now... I'll be back with you shortly...   
Title: Re: Life after being caregiver
Post by: boswife on December 21, 2009, 05:28:26 PM
I cried,  I smiled, was warmed, and grateful to you for sharing this beautiful gift.  And yes, reasured..  It was beautiful and should be listened to by us all.  Again, thank you...  Merry Christmas Sarah, and Merry Christmas  Sarahs mom and family, and to all who have lost a dear one, I pray for comfort and Peace and a Merry Christmas..
Title: Re: Life after being caregiver
Post by: pamster42000 on December 21, 2009, 08:23:33 PM
Thank-you for responding.....I was deeply moved by the song and wanted to share it with others.
Title: Re: Life after being caregiver
Post by: dwcrawford on December 22, 2009, 04:27:33 AM
Some of you people, pam and all, never cease to make to make me ashamed of the moments when I feel sorry for myself.
Title: Re: Life after being caregiver
Post by: fc2821 on December 22, 2009, 11:34:19 AM
A big  :thumbup; and :clap; for all the care givers. It is a hard "labor of love" to preform.
I posted this Dec. 14 and nobody responded....is it that  depressing......I thought it was showing respect ....I thought of Sarah when I first heard it
I am sorry I didn't coment, I just didn't know what to say. There are no words I can write that will make the loss of your daughter easier for you. I wish there were I would write them. All I can say is I know you are a great mother and a fine human being who loves Sarah so much you shared her with us here on IHD. Thank you. Rob
Title: Re: Life after being caregiver
Post by: pamster42000 on December 22, 2009, 02:11:19 PM
I am sorry if my posts make people feel sad or ashamed of their own feelings sometimes. That is not my intention at all.
 We traveled the road alot of you are on right now beginning at the diagnose of ESRD to our own personal loss of Sarah. I remember days when I felt sorry for my daughter having to go through the things she had to and yes for me. That is only human. I feel a kinship with you......I can make a statement and people on IHD know  .......family and friends don't seem to understand the trials that are endured with a chronic health issue.  There are the wonderful times when everything is going well and then you have the bad events when you have to take it one day at a time.

I feel privileged to share Sarah with you.....you are a wonderful group of people!!

Remember: Think Positive!  :)
Title: Re: Life after being caregiver
Post by: Mizar on December 22, 2009, 04:25:11 PM
I don't know You and I didn't know Your Daugher, but Everytime, You Post and I look at Your Avatar, I know, that the Lovely Woman in it, is, " Sarah "  She will not be Forgotten. A Blessed and Wonderful Christmas to You and Your Family.
Title: Re: Life after being caregiver
Post by: glitter on December 22, 2009, 07:45:12 PM
Dear Pamster,
   I am ashamed I didn't post- I too- was afraid to listen, I have cried so much this year, getting through Christmas this year is so sad, I just didn't want another sad moment.

However, you inspire me to keep on living, I know my Dear Husband would not want me to be sad at all...but I can't help it this year-its my first in without him. I keep coming here and posting because I need to, the last three years, ESRD was the most prominent thing in our lives.

I love reading about your Dear Girl Sara, she was so beautiful, her short life touched a lot of others, even after she passed, here today we enjoy hearing about her, and getting to know her. Thank you for that. Keep sharing,   :grouphug;

 love Julie
Title: Re: Life after being caregiver
Post by: petey on December 24, 2009, 04:58:42 AM
Pam -- beautiful song!!!

It helped me a lot, as my husband's family is struggling this year.  He lost two brothers since last Christmas (one in January, one in September -- both to cancer).  We are all a little weepy thinking about Buddy and Walt and how they were here last year but they're gone now.    Thank you for sharing!
Title: Re: Life after being caregiver
Post by: pamster42000 on January 05, 2010, 02:27:55 PM
The first Christmas after Sarah passed away was hard. I missed not having her quick wit and smile present. It felt empty in a way. This was the third Christmas without Sarah and I still wanted to cry because she wasn't with us. We were playing cards and all the sudden I thought of Sarah and wanted to cry.....but I didn't because I didn't want to freak the others out. We were losing at the time and didn't want my family to think I was a poor loser.  :)
My brother's daughter gave me a hug when they were leaving, which was unexpected by me. Just made me feel better.

Even today I thought of Sarah at work and I did cry for a little bit, but there is the times when I think of Sarah and smile so I figure time does eventually heal all wounds.

Title: Re: Life after being caregiver
Post by: cariad on January 05, 2010, 04:41:50 PM
We were losing at the time and didn't want my family to think I was a poor loser.  :)

Pam, I love how you slip humor into your moving posts about Sarah. Glad to hear that Sarah still gives you those smiles, too.

The song was lovely and very appropriate and respectful. Thank you for sharing it.  :cuddle;
Title: Re: Life after being caregiver
Post by: paris on January 05, 2010, 06:05:37 PM
Your posts are always like poetry.  So very moving and real.  Your thoughts help each of us face tomorrow because you have gone through one of the worst things in life and you still keep putting one foot in front of another and living a good life to honor Sarah.    :cuddle;
Title: Re: Life after being caregiver
Post by: okarol on January 05, 2010, 07:19:23 PM
I could cry just thinking about you losing Sarah. I appreciate you sharing her with us. She'll never be forgotten.
Title: Re: Life after being caregiver
Post by: pamster42000 on February 10, 2010, 02:48:36 PM
I am thinking I am out of the loop because I haven't been involved in the dialysis or transplant area for a couple of years now. The medical field is always changing and my info that I know is out of date. Still I know how it feels to be a caregiver, all the emotions involved so I will still continue to be a part of this wonderful support group in any manner that I can.
Title: Re: Life after being caregiver
Post by: okarol on February 11, 2010, 08:52:08 PM
Still I know how it feels to be a caregiver, all the emotions involved so I will still continue to be a part of this wonderful support group in any manner that I can.

That's what is helpful, to have another person who understands.
Title: Re: Life after being caregiver
Post by: glitter on February 11, 2010, 09:01:16 PM
I am kinda out of the loop too- but I have much love for this place- and its nice to be in the company of the only other people who get what I went through as a caregiver. I feel like I have an ongoing relationship with all kidneys now, I learned so much here. Dont you feel like coming here is honoring her memory amoung people who want to hear about her? Your daughter was a beautiful person, and so are you, and your needed here- just because.  :flower;
Title: Re: Life after being caregiver
Post by: pamster42000 on August 18, 2010, 11:16:27 PM
There is life after being a caregiver....It will be three years Oct 1st that Sarah passed away. I still have alot of dreams with her in them...usually relating to when she was a young child. I say daily to her that I love her.
I think being my other daughter, Savannah gave birth to a son a month after Sarah died helped the feeling of loss, he didn't replace Sarah, he just helped ease the pain some.

Beings I was involved through the progression of Sarah's disease it helps me at my job at a nursing home. I know what the family is going through and it helps me relate to them better. When I take a resident to a Dr. appt. I know the questions to ask and that makes the resident feel more comfortable. Also when a resident's family member passes away I can relate to how they are feeling. I have gotten compliments on how much family members think of my actions....all I can say is...Sarah has given me the courage and strenght to help others.