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I Hate Dialysis Message Board
Dialysis Discussion
Dialysis: Spouses and Caregivers
Lost Soul
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Topic: Lost Soul (Read 4519 times)
Yvonne
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Yvonne
Lost Soul
«
on:
July 27, 2010, 10:04:24 AM »
Thought I would drop in today, I have not been on for ages. I feel like a lost soul and do not know what to to with myself. I miss John so much and it does not get any better in fact it gets worse. I have looked around and there is nothing for around for the bereaved, I need to talk to some one about John's last moments I keep going over and over it in my mind thinking I could of done more. I know it will not bring him back but there is aways an IF. This site helped me to cope with John's illness and now where can I go to help me with his death?
Am I just feeling sorry for myself ?
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
Dianejt
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Re: Lost Soul
«
Reply #1 on:
July 27, 2010, 10:08:08 AM »
Hello Yvonne, I have been thinking of you so much. I'm so sorry you are feeling so lonely, it must be so hard to see what each new days bring. Feel free to tell us about Johns last day. We are here for you & miss you so very much.
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caregiver to husband Frank
bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
billybags
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Re: Lost Soul
«
Reply #2 on:
July 27, 2010, 10:18:40 AM »
Yvonne, It is so nice that you have
"dropped in"
I am sorry to hear that you feel like a lost soul. When you have been married for so long it must be heart breaking to be on your own. They say time is a good healer, I don't know.Give your self time, you are still grieving and will be for a long time to come. Have you not got a bereavement council near you, could you not get in touch with the the local council and ask. You should not be asking
"what if"
you did everything you could for your John, he wouldn't want you thinking this way. Are you looking after the grandchildren while they are on holiday? I think about you a lot, all you have been through, all your John went through. Lots of love. Ann
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paris
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Re: Lost Soul
«
Reply #3 on:
July 27, 2010, 10:33:14 AM »
You have been missed Yvonne. You can always come here. There are many who have lost their spouse and can relate to what you are feeling. You were an incredible caregiver. You always put John first and did everything you could for him. His body was worn out and it seems like he was ready to have peace and be painfree. Unfortunately, you are now the one with all the pain. Heartache is hard to make better. We are here for you and will listen any time you want to talk. John hasn't been gone long. It will take time to heal. He will always be with you. We love you and pray for you.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Darthvadar
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Re: Lost Soul
«
Reply #4 on:
July 27, 2010, 11:12:44 AM »
Great to see you again, Yvonne....
I was hoping you'd come back.....
Please feel free to tell us all... John became a big part of my life whan you were telling us how he was doing...
Keep in touch.... Don't be a stranger....
God bless... Thinking of you....
Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
kristina
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Re: Lost Soul
«
Reply #5 on:
July 27, 2010, 03:02:52 PM »
Dear Yvonne,
I am so sorry to learn about the sad news about your husband John.
I can appreciate this is a very difficult time for you.
I do hope you have family and friends around you to help you through.
Kind regards from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
He was completion and fulfillment in itself, like a meteor which follows its own path.
- Robert Schumann -
... Oportet Vivere ...
monrein
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Might as well smile
Re: Lost Soul
«
Reply #6 on:
July 27, 2010, 03:12:37 PM »
Yvonne, I too hope that you will feel able and welcome to come here and "talk" to us about whatever it is you're feeling and thinking about. We can't be there with you but we will read and try our best to understand and it makes no difference if the feelings don't change in any big hurry...it's not at all easy what you've been through and John was so lucky to have you in his life. You can tell us when the day has been perfectly awful and you can also tell us when you've had the glimmer of a nice moment or more.
Logged
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
looneytunes
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Wishin' I was Fishin'
Re: Lost Soul
«
Reply #7 on:
July 27, 2010, 05:00:07 PM »
Oh Yvonne, I have missed you so much. I also have not been on IHD much in the past few weeks so to get on today and see your post...it was wonderful to see it. I know how much you must miss John and how lost you must feel. I can only offer to listen (read) and hope you wll feel that this site is just as much your family now as it has been in the past. I'm sending you a big hug
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"The key to being patient is having something to do in the meantime" AU
glitter
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Re: Lost Soul
«
Reply #8 on:
July 27, 2010, 09:15:28 PM »
yvonne,
I still come here too, its okay. There are some decent widow boards,
www.ywbb.org
is one, the widows tend to be younger, but not all of them are. Some are from the UK. I understand about feeling lost, its been almost a year and a half, for me, and I still wander around lost a lot. I have been trying to make friends, but that is hard too, people have their lives, and its hard to be around couples. I read a lot, and play on facebook, taking a few classes has helped fill my time too. Its hard to concentrate when all you want to do is scream, I know, but its how I keep from going crazy. I lost my mom three months ago too, my bestest friend. I wished you lived closer we could have tea, and I know you would understand me and I would understand you. I would laugh, but it is so not funny. Are you pretty good on the computer? try googling uk grief group, or something similar until you find something in your area, (if you want I can help you find one near you) also if there is a hospice place, even if you didn't utilize them, they are a good place to call and find out what kind of support is available in your area. Maybe a group, its nice to be able to talk to another widow sometimes. pm me if you need to chat on email,
I fixed the link above
«
Last Edit: July 28, 2010, 07:03:10 AM by glitter
»
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER
caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
RichardMEL
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Re: Lost Soul
«
Reply #9 on:
July 27, 2010, 09:40:15 PM »
Gee, I wish I knew what to suggest. It's a bit of a neglected area support wise isn't it? Sort of like we're expected to just deal with it and get on with our lives. I can only relate in the sense of losing my mother 4 years ago.
Maybe this is something you could turn into an opportunity and look into ways you can support others, or start some kind of community group or support network for those who have lost loved ones to chronic illness - doesn't just have to be kidney disease, there's cancer, HIV, heart disease, whatever....
I mean Epoman started the way when he started this very website, so there are ways.
I know that doesn't help YOU per se, but it might be something to think about for down the track to give you something to focus on that is more positive out of your experiences.
In the mean time I know all of us who "knew" John through your posts and updates share with you feelings of loss and sadness at what happened. You always have a "home" here to vent, cry, just ramble.. whatever helps.
Logged
3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!!
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Jean
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Re: Lost Soul
«
Reply #10 on:
July 27, 2010, 11:33:14 PM »
Yvonne, you have been so missed. You are always welcome here. We all feel we knew John thru your postings. It has not been all that long since he left you, but it takes time to heal. Try very hard not to worry about your caregiving. Not being there with you, we cant know what happened, but we do all know you were a great and loving caregiver. John is now resting in peace. You do need to some how find a support group for widows. No matter the age of the others, but it can help you. I had to go thru the whole thing twice, and only then did I feel somewhat better. Keep yourself as occupied as you can and give it some time. The pain will never go away, but it does get better. Trust me, been there and done that.
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One day at a time, thats all I can do.
MooseMom
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Re: Lost Soul
«
Reply #11 on:
July 27, 2010, 11:46:21 PM »
I have not had the opportunity to read many posts about John. If you feel up to it, I'd love to hear more about him. What did he enjoy? What about him made you laugh? What about him made you angry? When did you first know that you were in love with him?
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
texasstyle
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Re: Lost Soul
«
Reply #12 on:
July 28, 2010, 06:33:40 AM »
Yvonne, what your going through is so natural but it doesn't make it feel any better. I know you are still still saddened and "lost". We go through all the grieving stages. You helped and cared for John exceptionally during his illness and you couldn't have done it better. You did the best you could. It is so very hard to accept the death of a loved one. Acceptance is the last of the grieving stages. When you get to that you will feel a peace. I know John wants you to feel that and I know you know he does too. Thinking of Carolyn
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caregiver to husband using in-center dialysis 4 years
Poppylicious
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Re: Lost Soul
«
Reply #13 on:
July 28, 2010, 08:31:11 AM »
Yvonne, how wonderful to 'see' you, but not so wonderful that you feel such a lost soul.
There's some fabulous advice here, especially from Richard and glitter, which I can't add to; hopefully you'll find a support group (or whatever it is that is right for you) to help you through the grieving process. I really hope that nobody is making you think that you're *just* feeling sorry for yourself, not least because you have every right to feel that way.
Many *huggles* ... pop back often, if you can.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003
(personal blog)
grumbles of a dialysis wife-y
(kidney blog)
sometimes i take pictures
(me, on flickr)
Everything was beautiful, and nothing hurt.
Mizar
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Re: Lost Soul
«
Reply #14 on:
July 28, 2010, 02:23:18 PM »
Yvonne, I have thought of You often, when I read, this Board and Wondered, how You were doing. It takes Time, Yvonne, lots of Time. Use this Period of Grieving, to be kind to Yourself.
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billybags
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Re: Lost Soul
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Reply #15 on:
July 30, 2010, 10:55:01 AM »
Yvonne, I was talking to my daughter and she works for Age Concern, they have a bereavement councilor that you can talk to one to one. Just get in touch with your local AC and ask them about it.
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pamster42000
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Re: Lost Soul
«
Reply #16 on:
August 09, 2010, 08:39:21 AM »
After Sarah passed away Oct 1, 2007 there is that empty feeling... besides a loved one is no longer with you there is no more dialysis, physical therapy, pain specialists and other Dr. appt, emergency room visits . etc. Just all the sudden it is gone....that is a too big of gap to fill. All I can say is that I have experinced what you are and if you ever want to talk I am here. I know that empty feeling in your soul.
«
Last Edit: August 09, 2010, 08:43:30 AM by pamster42000
»
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Yvonne
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Yvonne
Re: Lost Soul
«
Reply #17 on:
August 23, 2010, 11:15:12 AM »
Hi to all you lovely folks that have replied to my posts and also sent me personal emails.
I still do not know if I'm coming or going. My girl's Debbie and Alison persuaded me to go on a Holiday with them, we went of to Majorca for 7 days. About a month before I went I put the house on the market and the weekend before flew out the house got sold so I quickly went out and found one to buy. On arriving back from the holiday all the legal paper work was there ready for me to sign. It took me all day before I could pluck up the courage to open the mail took one look at it all and decided I could not do this with out John. So I phoned up the estate agents and the solicitors and cancelled both selling and buying the house. My kids must think I'm going out of my mind.
I did have a lovely holiday and celebrated my 69th birthday while we were there, I did cry on the day as I missed John.
I will stay now where I am and spend a little money improving a few things that I do not like about it.
I spend 2 mornings a week looking after an old fried of mine Eileen, she is 84 and house bound so I do her washing and ironing and get in her shopping for her and any other personal things she needs me to do. Also looking after my youngest Grandaughter 11 year old Tia throughout the summer holidays, so I do try to keep myself busy.
Thank you all once again Yvonne
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
Mimi
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For any who do not like me I use - prayer.
Re: Lost Soul
«
Reply #18 on:
August 23, 2010, 04:54:06 PM »
Yvonne I know just how you feel, although my loss was through divorce and not death. When you aare grieving nothing else seems to matter. My grandson's ex girlfriend wrote to me on Facebook the other day. She asked me 'Mimi do you ever get over it when you truly and completely love some? I have continued
with my life and even got married. But that old feeling is still there.
And it is bittersweet. I told her F..... there is always a piece of your heart that remains with him when you go your separate ways. But as time goes on and you make memories with your
husband and they will be golden memories, the ache will dim, however I don't think that any of us ever totally forget..'
Yvonne you ARE going on with your life. You are taking holidays,
caring for a friend, and your granddaughter. As time goes on you will begin to remember your golden moments. It won't be right away but it will come. In the meantime if I werre you I would continue to look for grief counseling to help you through. I used to have some links to grief on my old computer, I will look around and
see if I can find some for you.
Much love and peace to you,
Mimi
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
boswife
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us and fam easter 2013
Re: Lost Soul
«
Reply #19 on:
August 23, 2010, 08:15:30 PM »
Im so glad to hear from you Yvonne. praise God that your finding things to keep you busy. Even if they're not making you happy *yet*, i believe they're helping you survive and start another page of your life. God bless you and keep you safe, and bring you peace. Sending love and hugs..... and please keep in touch.
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Poppylicious
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Re: Lost Soul
«
Reply #20 on:
August 26, 2010, 03:08:03 PM »
Mimi said everything I wanted to say, but in a far better way than I could have done.
Many *huggles* for you.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003
(personal blog)
grumbles of a dialysis wife-y
(kidney blog)
sometimes i take pictures
(me, on flickr)
Everything was beautiful, and nothing hurt.
looneytunes
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Wishin' I was Fishin'
Re: Lost Soul
«
Reply #21 on:
August 26, 2010, 08:39:06 PM »
Yvonne, I am so glad you are taking holidays and getting involved with your friends care. This is something you do and do well. Bless you for being there for her.
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"The key to being patient is having something to do in the meantime" AU
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