forced IV and peg feeding

[zonkjonk]

thanks sylvia,
I have bucketloads of strength
I can do this, I WILL NOT fall apart
honestly, i pray for the day my mum no longer suffers and is reunited with my dear dad.
I hope to ease her suffering, as best I can.
from my extensive reading, I think I will be faced with the peg feeding issue, and as I have medical POA, i know what to do
I just hope my brother understands and will not fight me on this
these upcoming months will test my ability to stay strong

I wont lose the plot for my childrens sake

It took me 2 years after my dads death, to be able to eat, sleep or socialise, but I had the strength to continue to work
one day at a time
kind regards,
Jo

 

[Skye]

Dear Jo,

I'm so sorry the improvement was short-lived. It's so hard to see someone in that condition, and I think most of us would hope that this stage doesn't go on too long.

At least, having experienced it with your dad, you are prepared. Perhaps you could talk to your brother about the PEG in advance? I know when I had that situation with my mum, I felt I had to ask all the relatives if they agreed, and it was so hard to do. At least if you and your brother make the decision together, you'll have some support.

I know you'll be strong. Just keep posting, and let us know how it goes.

(PS My sis, bil, and nieces all live in Melbourne)

Love,

 

[zonkjonk]

where in melbourne are your family?

I rang the hospital today...my brother went to see mum.
so it is now day 4, eating little,still needing IV and cathetar, incomprehensible speech,no bowel movements since nobody knows when.
still on pain meds and sedation. she has also lost a lot of weight.
abdominal xray today to check for constipation.

I have previously mentioned peg feeding to my brother, but he is not really inclined to be interested in medical things. There is no other family to consider.
he is a "smoker"*(if you know what I mean) and unemployed, and an ex drug addict. He is what normal people would consider to be eccentric, putting it mildly.
But I have sole medical POA so I make the final decision anyway.
my plan is to search for peg feeding threads, print them out and post to him so he will know on what information I base my decision.
One of my dearest oldest friends is a nurse(who I havent been in contact with recently) who used to own and run a NH.
She helped me find my way through the maze of finding and paying for suitable a NH
she works as a relief nurse thoughout the various homes in our area
she actually did a shift looking after mum about 4 weeks ago prior to mums fall
one of the first things she ever said to me was "dont accept peg feeding, its cruel"
I had no idea what she was talking about
her husband was in his heyday the BEST dart player in OZ, my husband is/was pretty good too
they played together for years
I played for 15 years and I wasnt half bad either! but, I digress.

Mum cannot continue on in this condition without nutrition coming up eventually.
Unfortunately, she is in the same hospital where my dad died.
I am not sure but I imagine that the peg feeding decision should come up in a matter of weeks if mum doesnt improve
probably right on christmas or sooner
I dont feel the need for any advice etc, It just helps me getting on here and typing it all out, it helps me get it it out of my head when I type out what I am thinking.
kind regards,
Jo

 

[Skye]

Hi

My family live in Toorak. We spent a couple of weeks with them in 2000, as part of a two month tour of Australia. We loved every minute of it. I'll go back one day, though it will be painful without John. I spoke to my sis yesterday, and she said her granddaughters (11 & 13), both had fabulous new outfits, including very expensive hats, for the junior fashion parade on Gold Cup day. And I though Ascot was daft enough!

If you want a discussion of PEG feeding, this is one I remember particularly. I know advice doesn't really help, it's all to do with personal feelings, but at least it will prepare you for the emotions before and after.

http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=5958

I think you may be asked for a decision soon, they don't let things get too bad, as the patient has to be strong enough for the operation.

Thinking of you,

Love,

 

[elaineo2]

Dear zonkjonk.I am so sorry to read your posts and what you have been going through.I have experienced these situations through work,and would not wish them on anyone.I have posted a couple of times at my concerns over residents not eating and drinking etc.I am a stickler for it really.Non of us can tell you which way to go on this.at the end of the day you have the medical poa and obviously for a reason.such a difficult time for you.all i will say is that if your not happy with the treatment or anything else for that matter,voice your opinion,and play devils advocate if need be.love elainex p.s we all want the best and it's people like you who give us the strength to do it!

 

[christine_batch]

Dear Zonkjonk,
I have found like so many others, that we come across herrendous messages.
It is so difficult when we no longer want our loved one to suffer anymore.
My husband at 62 is in the final stages. His wishes at the beginning of A.D. was written down very clearly. No resussitation, organ donation, brain to A.S. Research. As much as I would not like to let my husband go, I must respect his wishes and out of love for him to pass peacefully.
I wish you all the best. Christine

 

[zonkjonk]

thankyou for your kind words all.
It is now one week since mum was hospitalised.
She has now no natural urine output, no bowel function, no mobility,no speech, and the dietitian is coming on monday....no doubt to reccomend(sp) the protein drinks etc
She is still on IV,cathetar,sedatives etc
I have now come to accept that since all their tests have come up negative, that she is dying. I will have to confirm but at the moment she is just receiving palliative care.
I am 43, mum is 71
next hurdle...telling my 2 children that their nanna is dying, (to lessen the shock)
I need to speak to a doctor as to whether the IV can be taken out and the NH can sustain fluids by hand feeding.
I need to contact the NH re what happens to mums bed should she remain as she is now
I need to organise mums funeral
It would be so nice if someone else could just take over everything
now I am just dreaming
exhaustedely yours
Jo

 

[Skye]

Dear Jo

You really wouldn't want anyone to take over, would you?

This is your mum, whom you love dearly, and this is the last thing you can do for her. Just make sure she has a peaceful end, (and that might be easier in hospital, where thay will be able to keep her pain-free, unless you would prefer her to be back at the NH).

Tell her you love her, hold her, and tell her it's OK to let go. Just make sure she feels safe and loved.

Forget about the funeral until it is time -- when the time comes, you'll be glad to have the practicalities to focus on.

Thinking and praying for you and your mum,

Love,

 

[Grannie G]

Dear Jo,

Just take one day at a time. No-one has a gun in your back.

All you can do right now is prepare your children, and prepare yourself.

Take care,

Love xx

 

[elaineo2]

dear darling.You are obviously prepared(well maybe not,but expecting the worse).My hearfelt love goes with you all.prepare the kids in your own time,and make it a time you can all reflect on if you can.the good old days are always the best days.love elainex

 

[Margaret W]

Hi Jo, yes sometimes it is the organisation of everything that gets to you. I am very bad at handling that. It seems I switch off, and I can only manage one phone call, or one letter a day. It exhausts me to do it. So I do understand.

But you know it has to be done.

I wish you all the very best.

Margaret

 

[zonkjonk]

thankyou all for your help and taking the time to reply
Mums physical condition has not improved.
Mum went back to the NH and has had 5 falls in 24 hours
Culminating in a call to me this morning from the aged care assessment team. Who were very understanding and addressed the difficult issues very tactfully.
the ultimate purpose of the call was to review mums care considering her sustained physical deterioration, and to find out the "family wishes"

mum`s new care plan is palliative.(joint decision between me and ACAT)
it is the best course to alleviate her suffering. I will not actively seek medical intervention again.
so there is nothing more to be done.
I asked ACAT to advise my brother
I have explained to my children what this means.
I feel oddly at peace with this decision because I have had a long time to think about it. I dont need to "hold on to her" anymore.
she had slipped from my grasp some time ago.
how long will she survive?
i know the answer...its as proverbial as that piece of string.
kind regards to you all,
Jo

 

[Skye]

Dear Jo

I'm pleased you are at peace with the decision. As you say, you've had time to think about it, and consider the options, and I think you've made the right decision.

You can now concentrate on making your mum's last days or weeks as comfortable as possible, and let her know how much she is loved.

It's a sad time, and I wish you the strength to get through it. Please post and let us know how you are.

Love,

 

[Grannie G]

it is the best course to alleviate her suffering. Jo

This is what it comes down to, isn`t it Jo?

Whatever intervention you might have decided to try would never have made your mother well again.

Now you are at peace with the situation and your decision, for both yours and your mother`s sake, I hope that piece of string isn`t too long.

Love xx

 

[Mameeskye]

Hi Jo

I think that you know when you have made the right decision, even if it is a difficult one as you do experience that sense of peace.

My thoughts are with you. These are hard decisions.

Love

Mameeskye

 

[Taffy]

I will not actively seek medical intervention again.

Hi Jo, I also agree with the decision made and hope that your mum's remaining days are peaceful. I also hope that the days that lay ahead for you are bearable. Take Care Taffy.

 

[Margaret W]

Hi Jo,

We had similar decision to make with my mum-in-law, who suffered a severe stroke, and my dad who had stomach cancer. At the end of the day, when you know it is the end of the day, there is nothing you can do except relieve pain and wait for the inevitable.

I hope you can be there with your mum when her time comes. We, sadly, were not with either mum in law or dad. In mum-in-law's case we had no idea when it would happen, in dad's case we were telephoned one morning at 10 a.m. having visited the previous day, to say he was agitated and had asked staff to phone us, but no urgency, a visit that afternoon would be fine. He had not been agitated before and I suddenly felt it was urgent. I rang mum at once, and picked her up at 10.15, and we got the phone call to say he had passed before we even set off. I hope he knows how quickly we moved to try to be with him.

But I am heartened that he did not suffer - 15 minutes maximum, but I am desperately sorry that we were not with him.

So, if that happens to you Jo, accept that you have done your best.

My thoughts are with you.

Love

Margaret