I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
March 28, 2024, 03:04:03 AM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Spouses and Caregivers
| | |-+  My caring responsibilities are ending, and I'm heartbroken!...
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: My caring responsibilities are ending, and I'm heartbroken!...  (Read 6009 times)
Darthvadar
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2815


« on: January 26, 2014, 11:18:47 AM »

Hi All...

Mum got a bad UTI on New Year's Day and stumbled... As well as the UTI, she has a knee fracture and is in bed in hospital... She got really confused two weeks ago, and very agitated... An MRI showed quite a deterioration in her brain... Then on Thurs. Jan 16th., disaster... At 9am, I got a call from the hosp. to ask me to come in urgently... Mum was having seizures... I got there at 9.30am, and they were still trying to stop the seizure... They finally stopped it at midday, but the docs were all convinced that this was the end... I asked her Neph. if he thought so too, and he was certain that it was... So I told him that I wanted no heroics... Allow natural death, but keep her comfortable... The Neph. got a doctor from the Palliative Care Team to come to me within minutes... That young man, Conor was a gem... Promised that come Hell or high water, Mum was going to have a peaceful journey into the next life, IF she wanted it!... Interesting comment, that was!.....

So they fitted her with a syringe driver, and allowed it to pump a cocktail of drugs into her... An anti seizure drug to help prevent further seizures was given (she had a few seizures, but as there were so many drugs in her, I'm certain she wasn't aware). She had plenty of morphine, and a good dose of anti-nausea meds... Then I waited... They moved her into a single room, set up a bed for me, and told me that she'd be gone by that night, or early next morning... They put a sign on the door alerting people on the ward that a Palliative Care patient was being cared for there, so they could be mindful of their behaviour, noise levels, etc...  She was so peaceful... Even her breathing was silent...  She got amazing care... Every couple of hours, the nurses would come in to change her so she was always clean and dry... Her dignity was SO respected... I held her hand, and told her that when she was ready to go that she should go with my blessings for a Bon Voyage... Next morning at 10.10am, she opened her eyes, looked at me and said 'Hello Carolyn, have I had my dialysis yet???'... I replied 'Not yet, you go back to sleep for a while'... She said 'Okay, Until what time???'... So I alerted a nurse who asked her if she knew where she was, what day it was, etc.. She was spot on in all the answers... So dying was off the agenda for the moment!... She told her Neph. when he came in to see her that she hated his suit... He asked her what was wrong with it, she replied 'It's dark, dreary, and it makes you look old!'... He asked her if she wanted him to stop wearing it... She replied 'No, I want you to burn it!'... That was him told... However, as time has passed, she's going downhill... They don't know if it's seizure damage, old age, renal failure, or a combination of all of those, but her memory's a struggle... She asked me today how my gran is... Gran died in Jan 1983!... I just told her that she was fine, and I wasn't lying... She is in Paradise, and so she IS fine!...

Anyway, the docs have determined that I can no longer look after her at home... Her care needs are too great... I am heartbroken!... I feel I'm letting her down, and abandoning my darling mum when she needs me most!... Can't stop crying!....

I'm finding it SO hard to come to terms with Mum going into care... Suppose it's natural after caring for her for years... I still don't want her to go into a nursing home... I feel SO guilty that I can't save her from what she dreaded most... I'm totally heartbroken... Hate not being able to look after her... The decision's made, though.... What helps is that her Neph. has taken the decision from my hands... He has said that he won't release her back to my care under any circumstances for both our sakes... Tells me that she's only alive now because of my care,  nobody expected her to last six months in 2006, but I have to step back now and allow the professionals to deal with her ever increasing dependency... So he says that the decision to place Mum in care is no longer mine to take, it's his!... And any guilt that's involved in that decision is his, not mine... I've struggled with this, and asked him 'And if I insist and arrange to take her home anyway, George???'... He replied 'Carolyn, much as it would pain both of us, I would have no option but to ask the hospital's Legal Team go to the High Court for an emergency hearing, and have Elsie made a ward of Court. You're not able to look after her on your own, anymore... Nobody could.. Every little bit of personal care that she needs is taking two people to deliver, and that won't change... And I would be failing in my duty of care to Elsie if I discharged her into what I believe to be an unsafe care situation'... And looking at things realistically, he's right... Chances are, she'd be right back in hospital within days... Between the Parkinson's, Renal Failure (needing dialysis three times a day), Diverticular Disease, Arthritis, Osteoporosis, Urinary Incontinence, increasing tendency to falls, and Skin Cancer, I was already struggling to look after her properly on my own... Was just about coping with her care with difficulty... Throw in the new issues of the knee fracture, the brain atrophy, memory difficulties, double incontinence, and seizures, and I'm now WAY out of my depth... I think even if I wasn't significantly disabled, I'd be out of my depth, but being disabled makes it unsafe for both of us for me to even try... At least this way, I still get to make all other decisions relating to her care... If she was a Ward of Court, I wouldn't have any say in her treatment... I'm so upset about not being able to continue caring for her, though... Always believed that it is my duty to care for her... I always assumed that I'd be caring to the end... Just never expected it to end like this... Always hoped that I'd bring her a cup of tea one morning to find that she'd slipped away during the night... Typical Mum though... Never do anything the straightforward way!... I'm SO weepy about it all, though... House is so quiet without her...
« Last Edit: January 26, 2014, 11:20:40 AM by Darthvadar » Logged

Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
monrein
Member for Life
******
Offline Offline

Gender: Female
Posts: 8323


Might as well smile

« Reply #1 on: January 26, 2014, 12:56:00 PM »

Sending you all the cyber support that can be transmitted through the internet and my hope that you will find your way through this loss of control and of your Mum as she used to be.  Your doctor is most wise and I'm glad that he has the strength to make this most difficult, but best in the long run, of choices.

 :grouphug; :cuddle; :grouphug;
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
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 6114


« Reply #2 on: January 26, 2014, 01:46:15 PM »

You deserve to be weepy. You deserve to rant and rave. You deserve some rest too. God knows and so does everyone here that you were a wonderful daughter and took such good care of your Mum. Think where she would have been with out you. We all love you and support you and want to hear of every singe thing that happens to you and to her.
Logged

One day at a time, thats all I can do.
SooMK
Sr. Member
****
Offline Offline

Gender: Female
Posts: 610


« Reply #3 on: January 26, 2014, 01:50:42 PM »

My heart goes out to you. What a great doctor to give you this guidance. Your mother has been blessed with your loyalty and care. It is a rare thing. I'm sure you will still be there by her side as much as you are able. Thinking of you both.
Logged

SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #4 on: January 26, 2014, 04:08:59 PM »

Carolyn, I really do understand and I'm sending all sorts of love and support. It will not be the same when she is in the nursing home. I know, as that is what I've been dealing with for my dad.

All through this you have been a most remarkable and caring daughter. I know you are full of regrets that you can't continue to give your mum the care she needs, but you have NOT failed her. You have provided her with love and care for all these years. Your love and care will just be a bit mediated now.

 :cuddle;

Your mum will still know that you have always done the best you could and still would do it if you could.

xoxoxox

Aleta
Logged

Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #5 on: January 26, 2014, 04:48:00 PM »

Please don't burden yourself with guilt.  You don't deserve it, and your mum wouldn't want that for you.

Instead, try to understand that "caring for mum" now just looks different, that's all.  You are caring for her in a different way.  Wouldn't you feel guilty if you denied her the palliative care she so richly deserves just because you want to be the one who does all of the caregiving?  You wouldn't be able to give her the meds she might need to alleviate her pain or her nausea.  You want her to be comfortable, right?  Well, it is your loving duty to make sure she gets the care she needs NOW as opposed to getting the care she needed a year ago.

Now you can take care of your mum's heart.  You are now relieved of all of the everyday tasks that took were so time consuming.  Now you have a whole team of people who will look after those needs while you get to spend precious time being truly WITH your mum.  These days will be precious to you both.

 :grouphug;
Logged

"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."
amanda100wilson
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1202

« Reply #6 on: January 26, 2014, 05:29:17 PM »

You have done a remarkable job.  No parent could ask for better.  Don't beat yourself up. :grouphug; :grouphug; :grouphug;
Logged

ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Zach
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4820


"Still crazy after all these years."

« Reply #7 on: January 26, 2014, 06:27:46 PM »

You are still a wonderful daughter!
 :cuddle;
Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
galvo
Member for Life
******
Offline Offline

Gender: Male
Posts: 7252


« Reply #8 on: January 26, 2014, 10:44:53 PM »

It's so sad, Darth. I feel for you. Is the nursing home far from you/
Logged

Galvo
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #9 on: January 26, 2014, 11:33:58 PM »

You'll probably spend a lot of time being an advocate for her as she gets settled.
She is lucky to have so much love!
Please let us know how it's going.  :grouphug; :grouphug; :grouphug;
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cassandra
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #10 on: January 27, 2014, 03:56:15 AM »


Sorry no words, lots of love, and strength, Cas

    :grouphug;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Poppylicious
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3023


WWW
« Reply #11 on: January 28, 2014, 03:35:32 AM »

I echo what everybody else has said above me.  And I send you both oodles of *huggles*.

 :grouphug;
Logged

- 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.
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!

« Reply #12 on: January 29, 2014, 03:30:53 PM »

Take comfort in knowing you can go visit everyday and that she is safe and warm.  You have done an outstanding job and she would not want you to hurt yourself trying to lift her ect. 

               :grouphug;
Logged

willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #13 on: January 30, 2014, 05:57:17 AM »

Darth,

No matter what your mum says when she is frustrated or confused, you know she has appreciated all you have done and will continue to appreciate your loving care. You have been the epitome of care. Your responsibilities are not ending; they are just changing to a new set.

 :cuddle;

Aleta
Logged

Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
aharris2
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1394


Volcan Pacaya, Guatemala

« Reply #14 on: January 31, 2014, 06:40:22 PM »

 :cuddle;
Logged

Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!