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Update on cousin with ESLD

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Posted 9/8/2014 3:57 AM (GMT 0)
Hello,
I thought I would give you an update on my cousin.
I took your advice and called an ambulance, nearly 3 months ago now and she has just this last week been discharged from hospital.
She has come home to die.
After many weeks of draining and drips and scans etc the hospital have decided they can no longer do anything more to help her and she is now receiving palliative care.
They have also said that they are no longer going to drain her stomach.
I am her main carer and at this moment in time things are not too bad. I do have home help 3 times a day and the palliative care nurses come out to see her every other day or so.
She is very frail and weak and is bed bound, oxygen 24 hours a day, eats very little, on morphine tablets and liquid morphine when her breathing gets quite bad and hardly eats, there are other medications too including lactulose.
But her mind is as sharp as ever...she has arranged her funeral and everything is in place for when she finally passes, which is so sad.
I try to spend as much time as I can with her and she is so matter of fact about the whole thing, it is like she is planning for a holiday not the end of her life.
I am not sure how long she has left on this earth, the palliative nurses told me weeks rather than months, but because she is not confused at all you would think she was going to get better.
I don't really know what to expect now but I have been told that because the hospital are no longer draining her things will progress more rapidly and she will be prone to complications. Time will tell.
The main thing is, at this moment in time, she is relatively pain free and comfy and at home.
Her breathing seems to be the main problem, even slight movement makes her breathless and thats with the oxygen.
I will keep you updated and again, thank you so much for all your support and advice.

Tracey.
Posted 9/8/2014 3:29 PM (GMT 0)
Tracy,

This is a sad journey to travel and it is so wonderful that your cousin has you there with her. Our members will be supportive through your journey..

We hope also that this journal of her experience can be a cautionary tale for others too...End Stage Liver Disease is a rough ride. If only one person can read this story and decide to change their life choices soon enough...well, you get the idea...

Mike and I are praying for either a quick remission of symptoms or a gentle passing. I think the palliative care folks are angels...they will help you these last steps.

Hugs,
Mama Lama
Posted 9/8/2014 5:51 PM (GMT 0)
Tracey,
It is good to hear your update, even though you are facing a difficult journey at this time. You are very special to care for your cousin at this stage of liver disease. You are wonderful and selfless, and I admire you.

I am happy you have an excellent plan and care team on board. It seems she is feeling as well as possible at this moment, and I truly hope her last days are as calm and pain free. We care. Big Hugs
Posted 9/12/2014 5:31 AM (GMT 0)
Tracey,

So sorry to hear about your situation. I think the hardest thing in life is knowing the inevitable is going to happen and we can't do any more. But I am sure that your cousin is very appreciative of all your efforts and will take that with her, and that is a truly special thing if you ask me.

The fact that she also has the ability to plan things for her passing while extremely sad, she is having the time to prepare and reflect on life. I think it is rare to do that.

I will keep you both in my prayers as I know these are the times getting through the day with a heavy heart is tough. In the meantime please do try and enjoy each day as much as possible with her.
Posted 9/16/2014 12:32 AM (GMT 0)
Hi all,

Sorry I haven't replied sooner but as you can imagine things are very busy here.

Firstly, I would like to thank you all for your kind words and support. I am so glad I found this site, you suddenly realise you are not on your own and the encouragement and caring spurs you on when you most need it.

Barbara (my cousin) is still at home thanks to the help of all the carer's and nurses. She will get her final wish which is to be at home when her time comes.

I have been told today that we are at the beginning of the end. HE is setting in quite rapidly now with hallucinations, confusion, dramatic mood swings, anxiety and drowsiness.

Her kidneys are failing and today there has been very little urine output, probably an egg cup full at the very most.

The palliative nurse, who now comes everyday, has told me that she may slip into a coma, which I feel is the kindest thing that could happen. Her mind is still as sharp as ever though in-between the confused moments.

They are talking about putting the syringe driver into place in the next day or two and have said that she could fall into a coma very quickly. We have all the required sedatives and medication to hand if she bleeds out or becomes so agitated that the morphine doesn't calm her.

She doesn't seem to be in too much pain which is good, the main problem is her breathing due to her very large abdomen pushing the lungs up, simple actions such as turning onto her side has her gasping for air and we have to wait a minute or two for her to get her breath back before we continue what we are doing and this is with the oxygen on.

I give her a mild sedative every night now to help her relax and sleep, this is additional to the Morphine and sleeping tablet. It seems to be working at the moment which is very good for her as this cocktail of drugs makes her breathing slightly easier.

I don't think it will be too long now before she passes....I will be very surprised if Barbara is still here with us this time next week. I am no Doctor but even I can see the changes in her day by day, even the very subtle ones now.

This is an horrendous illness and it is very, very sad to see my once absolutely stunning cousin (which she was) turn into a person which you can only describe as a living skeleton. (Have I gone too far?) I am sorry if I have offended anyone but it is the truth and I often think if I had a before and after picture of her published it would make people think twice about their alcohol intake, as she was absolutely gorgeous.

I am not criticising anyone that is alcohol dependent as I am well aware that this is an illness too, but I feel so strongly that more could be done to make people aware, especially young people, what could happen if they don't moderate their alcohol intake.

I will keep you updated and once again thank you so much for all your support and advice.

Tracey.
Posted 9/16/2014 1:42 AM (GMT 0)
Tracey,
Thanks for checking in. Such a sad thing for you to go through. I do hope she is peaceful and in as much comfort as possible. We care. My heart goes out to you. Big Hugs
Posted 9/17/2014 3:16 AM (GMT 0)
This is, indeed, a sad business, watching someone enter this transition phase of life...HALF IN AND HALF BEYOND.

And I agree, I wish we could tell those who are early in their travels to watch the alcohol, or IV drugs, whatever, and to save themselves before it is too late.

I am sure she, in her lucid moments, knows and appreciates your devotion to her wishes.

Hugs,

Mama Lama
Posted 9/17/2014 5:07 AM (GMT 0)
Sorry to hear the tough times you are going through right now. I agree that more should be done to bring awareness to what can happen by excessive alcohol intake. So many young people have no clue of the long term effects. Truth be told, I myself (who is 30) had no clue things could get to this point or what the disease causes.

It has been an eye opener for myself and my family. I stop and think of all the young people that binge drink often and the "fun" it is. The damage they are doing is scary. I was reading about a case where a 33 year old was in need of a transplant because of this very reason. You stop and think 33?! So this isn't necessarily a disease that takes decades to develop, it could happen with just a short amount of time of heavy drinking.

Everyone is different, but I will say that it seems from your comments you feel strongly about this, if so I applaud you if you decide to bring any type of awareness even if just to your family and friends.

When my dad first got sick I was so depressed I was drinking a bit and then realized how stupid that was. I even have some members of this board to thank for calming me down during my early erratic posts. Now I am the one letting my closest family and friends know the dangers and can actually give them medical information.

I hope your cousin can be as comfortable as possible and as ML said, I am sure your devotion to her wishes have not gone unnoticed.

Post Edited (lostson) : 9/16/2014 11:10:52 PM (GMT-6)

Posted 9/17/2014 6:18 PM (GMT 0)
Alantra - I just want to say Bless Your Heart for taking care of your cousin. You must be quite close to take that on ... and it can be extremely exhausting and challenging to be the caregiver. Thank you for sharing her story so we can keep her in our hearts and prayers.
Posted 9/18/2014 10:40 PM (GMT 0)
Hi,

Thank you all so much for your support.

At 9.30 yesterday morning, Barbara had a nose bleed. It was not pouring from her but enough to concern me when 30 minutes later it still had not stopped. I phoned the doctors who rang for an ambulance and now Barbara is back in hospital.

She has told me that she will stay there until the end. I feel this is the right decision as much as she wanted to stay at home, myself and the carer's could not be with her 24/7 which is what she really needs now.

But, in saying that, she is so strong willed she may yet change her mind.

I cannot say I am upset about this decision, it has been a hard couple of weeks and my heart goes out to all the families and carer's that are looking after their loved ones. This is not an easy job.

Of course, if she decides to come home again, I will look after her to the best of my ability and for as long as it takes.

I do feel so strongly about this illness and wish there was more I could do to stop this unnecessary suffering, it is a very cruel disease and my heart goes out to all the people (patients and carer's alike) who have had their lives turned upside down because of it. I admit, until only recently, I did not have a clue of the severity of this disease, what an eye opener.

For now, I am having a bit of respite and tomorrow I will start to catch up on my own jobs that have been left untouched for the last few weeks and spend a bit of time with my family whom have not seen much of me lately (that might not have been a bad thing).

Thank you again for your support and I will update when I can.

Tracey.
Posted 9/18/2014 11:55 PM (GMT 0)
Tracey,
I am sorry things are so difficult. It is so difficult to watch a loved one with end stage liver disease. It can be a slow and painful journey for everyone involved. Please know I am thinking about you and your cousin. Do touch base and let us know how things are going when you are able. Big Hugs
Posted 10/5/2014 5:37 AM (GMT 0)
Hi all,

Just to let you know, Barbara passed away, very peacefully last night at home.

She is finally at rest and out of pain.

Thank you again for all your support during this difficult time.

Tracey.
Posted 10/5/2014 11:56 AM (GMT 0)
Tracey,
My deepest sympathy to you and your family.
You are a remarkable person to care for your cousin, Barbara, during her last months on this earth. Your story and your devotion touched me on a personal level. Big Hugs
Posted 10/5/2014 6:00 PM (GMT 0)
Tracey

You and your family are in my prayers, God Bless you for what you have done for her in her finals days, dealing with somewhat the same situation my heart goes out to you..

Sharon
Posted 10/5/2014 7:27 PM (GMT 0)
Tracey,

My condolences at this difficult time. MamaLama
Posted 10/5/2014 9:34 PM (GMT 0)
I'm sorry to hear of her passing.
Posted 10/5/2014 10:38 PM (GMT 0)
Tracey ... thankful for you that it was peaceful and that you made her last days somewhat bearable. Sorry for your loss.
Posted 10/7/2014 4:28 AM (GMT 0)
I am so sorry to hear of your loss.

Susan
Posted 10/7/2014 11:41 PM (GMT 0)
Hi all,

Thank you all so much for your kindness and sympathy.

My heart goes out to all families and their carer's who are still going through the same journey, I was quite lucky in that my situation was comparatively short compared to some other's I have read about on this site.

I pray that you all find the strength and courage to continue with the care of your loved ones.

You are all Saints ... and I will keep you all in my prayers.

Bless you all.

Tracey.
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