My caring responsibilities are ending, and I'm heartbroken!...

[Darthvadar]

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...

[monrein]

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.

 

[Jean]

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.

[SooMK]

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.

[willowtreewren]

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.

 

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

xoxoxox

Aleta

[MooseMom]

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.

 

[amanda100wilson]

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

[Zach]

You are still a wonderful daughter!
 

[galvo]

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

[okarol]

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. 

[cassandra]

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

   

[Poppylicious]

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

 

[Rerun]

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. 

               

[willowtreewren]

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.

 

Aleta

[aharris2]