End of Life Care

[Mameeskye]

Hi

Feeling a little sad as after discussion with staff at Mum's Nursing Home the time has come for us to discuss End of Life Care for her.

She has gone rapidly down hill since the end of last summer and since Christmas has been bed ridden with TIAs at the rate of about 2 a week from which she has been rousing with some difficulty. She requires assistance with everything, rarely recognises anyone and is constantly talking to her "Angels", her invisible friends. She notices little going on about her and her quality of life has vanished.

My brother and I have discussed her care at length together and with the home staff and I have a telephone consultation with her GP tomorrow. Our main aim is to ensure that she has no pain, her dignity is preserved, she is not hospitalised and that she has a DNR put on her notes. She mainly manages her food and hates "Mush" so I am also asking that she has a normal date as long as possible as I would rather she dies living than lives dying. I know she would refuse "mush" so would rather risk aspiration pneumonia so she can eat what she enjoys. I feel so cold asking for these things eventhough I know it is what she would want and am dreading the phone call tomorrow.

Just feel so strange eventhough I know that it has been coming and although all has been discussed over time and informally it seems like a huge hurdle to get it onto her medical notes.

I am crying again inside for such a sorry end.

Mameeskye

 

[Grannie G]

Dear Mameeskye

Try not to cry inside too much. Hold your head up and know you are doing for your mother what she would have done for herself had she been able.

The wish of the majority of us is to be allowed to die with dignity, free from pain, and you are doing everything you possibly can, to ensure that for your mother.

Take care xx

 

[jenniferpa]

Dear mameeskye

I know this is an impossibly upsetting time for you, but I just wanted to say that I totally understand your "dies living" comment. I'm not even sure if "mush" would actually make much difference with regard to aspiration pneumonia. You're doing your best that you can knowing your mother as you do and that's all that can be asked of you.

You take care of yourself - we may not be with you in person but we're with you in spirit.

 

[Skye]

Dear Mameeskye, I feel for you so much. It is so painful, having to discuss end of life care for someone you love.

You know you're doing everything right, and it is so good that the home is discussing it with you, so many don't.

Don't bottle it up, talk to us about it. Many of us have already been through it, and know how it feels. I went through it with my mum, alone because my sister is in Australia, and the responsibility is huge. I know that I'll be going through it again before too long, and I can't bear the thought.

Look after yourself and your family, and keep in mind that you are doing what your mum would want.

Love and hugs,

 

[BeckyJan]

Hello:
Just wanted to say if I am ever in the same position as your Mum then I do hope my daughters behave and think as you do. Hard though it is I am certain you are doing the right thing.

Best wishes Jan

 

[christine_batch]

Dear mameeskye,
Passing away with dignity. At the beginning of A.D. Peter wanted a document drawn up;
Do not resusitate,
Organ donaton
Brain to Alszheimer's Research.
As much as I would like to keep my husband, I have to respect his wishes. Since he has been in the E.M.I.Unit since May and is in the last stage. Yesterday morning when I went to see Peter, in a week the deterioration is horrible. After the nurse gave him some food with his medication on, I took over the feeding. I hated it. It was easier when I use to feed my children. Then Peter's pad needed changing as he had messed himself. So I was holding his hands and gntly talking to him and then I saw how big his hernia had got. No wonder he was wailing. It was having about 5" from his stomach. I just wanted to run from that Unit. So to-day Doctor is coming in to see him and as Peter has had so many mild strokes, if they do operate, on reflection, I am so glad that document is in place.
I wish you sincere best wishes at this terrible time. It is only throught coming on to T.P. and messaging that even though my heart is breaking and I cannot stop crying, enables me to have a little more strength.Love from
Christine

 

[debby13]

Dear Mameeskye

Poor poor you, I am sending you a cuddle and wishing you lots of love and support. Be strong you will get through this and you will ensure your Mum gets the care she needs to see her through this final stage. There is help out there and it is probably worth trying to contact perhaps the macmillan people (they helped my friends Dad who was in a NH with dementia and she said they were absolutely fantastic). They do not usually do this but if you ask they seem quite amenable as long as you get her Docter or nurse to refer her to them (not fully sure of the admin). Anyway as Dad was in hospital we found a Palliative advisor who was brilliant and really ensured that Dad was well cared for and not in any pain. I hasten to add that we only found out about this palliative team by accident hence my suggestion that you ask and try and get some help. Anyway please take care of yourself and if I can help in anyway please mail me.

Take care

Debby xx

 

[Kayla]

My Mum once said that she saw an angel standing behind one of the nurses and she frequently said that there was a lady in her room in the corner.

Mum also used to talk about my Dad, who died in 2000 and she seemed to have long conversations with him. A few days before she died, she said that she dreamt that he was asleep and she couldn't wake him up and just as she did, a nurse came into the room.

I think that the "angels" may be the memories and dreams of loved ones and these would be a great comfort to a very ill person.

I also noticed that Mum seemed to be very aware of my feelings and moods and would comment if she thought I was sad. Perhaps people suffering from dementia have a heightened awareness of things that we are too busy to notice.

My thoughts are with you at this sad time.

Kayla

 

[nickyd]

Dear Mammeskye,
I really feel for you, being in this position. I understand completely, we lost Mum in September and even though we knew the end was near, you never think that day will come when you have to make these awful decisions.
Sending you lots of Love and hugs,

 

[Mameeskye]

Thank you for all your support and ideas.
Luckily Mum is not in any pain and currently is still eating on most days. I just wish I knew what she really wanted because this is a conversation that we never had although I think from things that she ahs said in the past that we are doing the right thing. I know in my heart we are doing the kindest thing for her but I am still a little girl who wants her Mum, but she isn't coming back no matter how much I cry.

Mum was relatively lucid for her as the "Angels" weren't there tonight..mind you, that is not saying much at all really! But I felt that she was calm and peacful tonight and just enjoyed being there with her. She is just so frail and from a weight of 13 stone during the prime years now weighs under 7 stone. She has shrunk so much.

When I came home I said to my husband that I am going to write down my wishes should I become ill so that the boys have them in black and white to make it easier on them should this come to pass for me.

I don't want her to go yet I am terrified that she will stay. She deserves more than this life.

Mameeskye

 

[Skye]

Mameeskye, you can make an Advance Statement under the Scottish Mental Health act. They're very much encouraged in the new National Guidelines.

You can read about them here:

http://www.scotland.gov.uk/Publications/2004/10/20017/44081, and there is a form you can fill in. It tells you who you should give a copy to.

They asked at John's NH when he was admitted if he had made an advance statement -- of course he hasn't, and it's much too late now. Welfare Power of Attorney does give me some say, but it's not as binding on the medical profession as the AS.

 

[connie]

Dear Mameeskye, can identify so much with what you are saying.

However, I don't think Lionel is anywhere near 'end of life'

Like your mum he has dropped about 5 stone in weight. Since the 3 seizures he had last week he seems to have dropped another level.

One of the caers said yesterday that "he was like a six year old schoolboy" still with a naughty streak. That was because he refused a drink. (He has had all his food pureed now for the past 6 months) Every day he seems to lose a little more of himself.

And yet I somehow cannot see that spark in him being extinguished.Maybed because I feel he is too young (who knows)

I understand what you want for your dear mum, and I shall remember the phrase "dies living" .

 

[Jilly88]

Dear Mameeskye
It's awful to think of the end coming, but when I knew that my auntie had just a little time left, I asked the doctor to come round and he gave me two pain patches to put on her abdomen. He told me that they were class A drugs and would release painkiller over the course of the week. I didn't ever get the chance to put the second one on her, but when she died last week, it was peaceful and painless. She had also gone down from about 8 stone to under 6 stone in weight. At this point she seemed to have one TIA after another but had absolutely NO pain. Give it some thought when the time is near. It comforted me greatly. God bless.
With much love
Jilly
xxx

 

[Taffy]

Dear Mameeskye,


This is a terrible place for you to be in right now and as hard as things are for you, you've got your mum's best interests at heart. Like yourself I have never discussed with mum her requests if the time came that it needed to be. In my heart but I know that if mum gets to that stage she never would want to linger on. Take Care, Taffy.

 

[forgetmenot]

end of life decision

just logged on today and seen the discussions. I am in the same boat and very very confused. The home are pressurising me into their decision of no resuscitation. I wrote a letter saying I wanted my mother to be treated like any other resident and that treatment would be provided if needed. They asked me to state whether I wanted her to go to hospital because she was not eating or drinking (we'd been through this once and she chose to eat and drink again in hospital). I sent another letter to say no I do not want to sent to hospital but to monitor her and encourage her with sweets and chocolate (if she refused them I would be worried) but if she had a physical injury or loses consciousness they must send her to hospital. No this is not enough they want me to spell it out and they are pressurising me to say no resuscitation. I don't know what to do.

 

[Mameeskye]

Forgetmenot, you must go where your heart leads you and do as you know what your Mum would want.

The GP was very kind this morning and understood totally given her health the situation. We have said that Mum must be kept painfree and suffer no distress. That Antibiotics can be given to relieve pain and distress but should they appear not to be working to consult with us before change or a second course. There is to be no PEG/Tube feeding and to try to keep her on a normal diet rather than pureed as she so hates the "mush" as she calls it. Finally that a DNR is to be put on her notes.

In respect of the DNR he was in full agreement, but also commented that programs like Casualty and Holby City have dramatised these beyond belief and in most cases this does not work, particularly with a frail, elderly, advanced state of dementia lady like Mum. I am happy that by saying this her last few moments may be peaceful rather than frenetic activity and stress both for her and those about her.

Now we spend the remainder of the time she has left be it days weeks or months making her comfortable and as happy as we can.

OH to know how long the piece of string is!

Mameeskye

 

[Nell]

Dear Mameeskye and Forgetmenot,

{{{HUGS}}}

These are the BIGGEST hugs I can manage on TP!!

 

[Taffy]

Dear Mameeskye,

For what it is worth I would do the same if it were my mum in that situation. How ever long that piece of sting maybe, I hope that your mum's remaining time is peaceful.

Regards Taffy.

 

[rummy]

hard choices

These choices are so difficult. Even though my parents had advance directives, I still have to make those decisions. I have found that these documents can be very gray and sometimes don't cover nearly enough scenarios. We do have a DNR for my Mom. My opinion has always been that I would let nature take its course and not try to bring her back, only to furthur decline into the fog of AD. She is on hospice, we do nothing curative but the nursing home will still ask me every time she has a sniffle if I want antibiotics. It is very hard to have to say "NO" over and over again.
But I just feel that this is the natural course of this disease and to intervene is to put what I want before what should happen.
I don't want to loose her but I lost the Mom I had a long time ago. She deserves to be free of this hell and move on.
She too see angels, her Daddy and many others. I've had skeptics say it is from depleted oxygen, etc etc. I just ask.....if it is a hallucination, then why doesn't she see live people? Well, we all won't know for sure until we're there I guess but it gives me tremendous comfort to know that she is not alone and won't be when she passes if I can't be there. ( ok, even if it is only in her mind)
A wonderful book on this subject is "Final Gifts" written by a hospice nurse about her experiences with her patients at end of life. It is a really good read for anyone in our boat.

Take care and just know that alot of us are where you are.
Love, Debbie

 

[Skye]

A wonderful book on this subject is "Final Gifts" written by a hospice nurse about her experiences with her patients at end of life. It is a really good read for anyone in our boat.

Thanks for that recommendation, Rummy, it certainly looks worth reading. Ilooked it up on Amazon, and will be ordering it. The customer reviews are worth reading in their own right.

http://www.amazon.co.uk/Final-Gifts...=sr_1_1?ie=UTF8&s=books&qid=1200483746&sr=1-1

Love,