advanced dementia.

[rioja_pauline]

My Father has advanced dementia and is currently in hospital, he has been on the brink of death with pneumonia & pressure sores. The hospital have kept him alive with antibiotics, draining mucus from his chest, giving him blood, oxygen ,hydration etc. It has been a real roller coaster. At present he is not eating and his chest is now getting better, but he lies in the foetal position and is skeletal. It seems so cruel to keep him going. I love my dad to bits but I feel that when they eventually send him home it will all start over again. He is constantly in and out of hospital with infections. Social services have delivered a hospital bed and hoist to his home. He will be at home by himself with carers visiting 4 times a day. I will visit twice a week My mother is also in a mental home and I have to visit her as well, I feel that my own life is just passing me by. I am going from one hospital to another. How do other people cope. I myself am 72 and somedays I have to make myself go to the hospital each day. I feel so guilty sometimes with the things I think. Is there anyone else who has gone through this and what did they do to help them.
Pauline

[Chemmy]

Hello Pauline

You sound in need of a large glass of that rioja

Seriously though, I have left instructions with my mother's GP and the CH that it would have been her wishes that nature was allowed to take its course in such circumstances. Have you been allowed any say in his treatment?

It seems inconceivable that he will be sent back home in that condition. I think the key might be to say loud and clear that you will take no further reponsibility for your dad's care if he is returned home, hard as that sounds.

[rioja_pauline]

Hi Chemmy,

I did say to the doctor that do not resuscitate, but that did not include all the nursing aids that were given to him. I feel even now that I should say withdraw any further treatment, but it is so difficult. I asked the staff nurse not to xray him after we stood outside his drawn curtains whilst they sucked out phlegm from his chest, and he was groaning, at this time he was on the critial list. She went straight to the doctor and said i was not satisfied with the management of my dad. He then explained that they needed to see his chest xray to help him with his breathing. It was then I said do not resuscitate. He was moved a few hours later to another ward. It is very difficult task to talk with a doctor when they keep moving him, and he has different doctors. He has been moved 4 times since he has been in hospital.

[PurpleJay]

Hiya, I think it is difficult to make your wishes known in hospital when you are dealing with lots of different people and their first thought is to preserve life.

I was asked to do an end of life care plan for mum by the care home and they had to ask loads of times before I could bring myself to put it in writing. The plan says do not resuscitate and do not hospitalise (although this is to be reviewed at the time depending on circumstances). It doesn't say do not treat.

To do CPR on a frail elderly person of advanced dementia seems cruel and wrong but would be something the home would have to attempt if her heart stopped while there unless they had the paperwork in place. I am happy that they will not hospitalise in the first instance and will attempt to contact me unless emergency hospitalisation is essential (in the case of bleeding or fractures for example). If the home can cope any benefit created by her being in hospital (if any) has to be balanced against the confusion and distress it would cause - tough call.

Having the plan in place - the ambulance service and gp have been informed and the out of ours have access to additional information to enable them to keep her at the c/h where possible.

Are you sure your Dad should be sent home in his condition to spend hours alone? What happens at night? It sounds like he has nursing needs and may be better cared for in a c/h setting with round the clock carers and nursing staff who have more time and may even be able to prevent further hospitalisation.

Good luck.
Jane x

Edited - after re-reading your post above - they may need to have the chest x-ray even if the decision was made not to treat - in order to see what they need to do to minimise his suffering. What happens next based upon the findings is where the decisions have to be made about how much or little they can/should do. As you say, very hard when they keep moving him. See if you can get the name of the treating consultant and try and get some time with them. They often cover different wards so nursing and frontline staff are different but consultant is the same. Alternatively the patient liaison service at the hospital or a senior nurse may be able to help if you can get some time with them. Thinking of you.

[Witzend]

Hello Pauline,

This must be so upsetting for you. As I understand it, hospital staff will sometimes do anything to keep someone alive, no matter how poor their quality of life, because they're afraid of being accused of negligence if they don't. It's surely up to relatives to decline intervention on behalf of someone who can't do it for themselves.

We were given this option for an aunt with the umpteenth UTI last year; we chose to let her go peacefully rather than have her being poked about by strangers in hospital.

And for my mother (93 and with bad AD) we have already given a 'living will' to the care home in duplicate: not just no resuscitation but except in the case of e.g. fractures, no medical intervention at all, except for all possible relief of pain and/or distress.

Personally I can't understand the sort of intervention you describe in such circumstances; when Nature is doing her best to let someone in such a poor state go, it seems incomprehensible to try to thwart her. It would seem that you must let hospital staff know what you wish for your father - maybe you need to put it very clearly in writing.

[mividame]

Hello Pauline,
I do so feel for your situation. My Mum went into hospital at the beginning of February with a secondary chest infection following a UTI. We weren't sure whether she would pull through and nor were the staff, so were asked specifically about whether we would want rescus and, hard as it was we said no because we believed it wouldn't have been fair on Mum to drag her back into a body that was failing fast anyway. In fact, strange as it may sound, we felt it was less selfish to decline. Mum responded to antibiotics and had six more weeks in hospital before she went down with pnemonia again. Both my Father and I had heard that this used to be called 'the old people's friend' and reasoned there had to be a reason for that. By this time Mum was, as far as we were concerned, trapped in a body that was dying anyway and we didn't want things to be even more distressing. When the hospital rang and said she was worse, we spoke to the doctor and asked if there was any point in treating with antibiotics as we felt it might be her time to go (we have a faith,I don't know if you do). The doctor was clearly relieved at us taking the initiative and explained that they would do everything to make her comfortable which was all the reassurance we needed. This may sound strange too, but it actually helped to think that we had 'helped' her move on. The staff were brilliant and compassionate and Mum slipped away peacefully with her loved ones at her bedside.
I have to say it was something I never imagined doing but am convinced it was kinder to her.
I hope this helps.
Mividame

[keywest67]

Hi

It sounds like a horrible situation for you to be in and im so sorry you are going through this.

I have had no experience at this stage in the dementia process however i wondered if you could contact PALS in the hospital, they are the formal department for making any complaint or helping to generally get your voice heard about the course of treatment.

I think it would be worth explaining the situation, you could even print and show them this tread, see what they can do to help you.

Best wishes x

[mividame]

Hello Pauline,
I do so feel for your situation. My Mum went into hospital at the beginning of February with a secondary chest infection following a UTI. We weren't sure whether she would pull through and nor were the staff, so were asked specifically about whether we would want rescus and, hard as it was we said no because we believed it wouldn't have been fair on Mum to drag her back into a body that was failing fast anyway. In fact, strange as it may sound, we felt it was less selfish to decline. Mum responded to antibiotics and had six more weeks in hospital before she went down with pnemonia again. Both my Father and I had heard that this used to be called 'the old people's friend' and reasoned there had to be a reason for that. By this time Mum was, as far as we were concerned, trapped in a body that was dying anyway and we didn't want things to be even more distressing. When it was clear that she was worse, we spoke to the doctor and asked if there was any point in treating with antibiotics as we felt it might be her time to go (we have a faith,I don't know if you do). The doctor was clearly relieved at us taking the initiative and explained that they would do everything to make her comfortable which was all the reassurance we needed. This may sound strange too, but it actually helped to think that we had 'helped' her move on. The staff were brilliant and compassionate and Mum slipped away peacefully with her loved ones at her bedside.
I have to say it was something I never imagined doing but am convinced it was kinder to her.
I hope this helps.
Mividame

[frazzled1]

My Father has advanced dementia and is currently in hospital, he has been on the brink of death with pneumonia & pressure sores. The hospital have kept him alive with antibiotics, draining mucus from his chest, giving him blood, oxygen ,hydration etc. It has been a real roller coaster. At present he is not eating and his chest is now getting better, but he lies in the foetal position and is skeletal. It seems so cruel to keep him going. I love my dad to bits but I feel that when they eventually send him home it will all start over again. He is constantly in and out of hospital with infections. Social services have delivered a hospital bed and hoist to his home. He will be at home by himself with carers visiting 4 times a day. I will visit twice a week My mother is also in a mental home and I have to visit her as well, I feel that my own life is just passing me by. I am going from one hospital to another. How do other people cope. I myself am 72 and somedays I have to make myself go to the hospital each day. I feel so guilty sometimes with the things I think. Is there anyone else who has gone through this and what did they do to help them.
Pauline

Pauline, my thoughts are with you, you are doing so splendidly for 72!!! First of all you have to congratulate yourself on such remarkable caring, going in and out of hospitals is very stressful. I did it with granny and every week was a new infection. She passed away i believe, when agressive cancer tereatment was offered to her on the same day as a double flu jab, i told everyone i thought that a cancer victim couldnt cope also with a flu jab on the same day as their treatment but they went ahead anyway and she dies days after and so i think to myself , was that a bit of a waste of time when i could have just taken her for a lovely day out instead as she enjoyed looking at flowers and plants and stuff or going out to eat even despite her awful illness...sometimes i want to run away from all these hospitals, take all these tubes out and just go for a lovely day out to a beautiful garden with loved one and just not bother to let anyone know where we are and just do our own thing and see if we cant just get a lot better and live a longer and better life on our own....of course, in reality that hasnt happened and now with Grandpa, the whole hospital routine is setting up again and its making him depressed, seeing the hospital and doctors surgery walls. Too many hospital appointments DOES make people depressed i know cos i kept a diary of our feelings, always up at home doing our own thing or out seeing gardens, rivers, boats, people, always down at the hospitals, into the depression again.....i know what you mean, you feel also your own life is passing you by.....but there are thousands upon thousands of us all in this together, all doing the same thing, thinking the same thoughts, some days happy, some days down, but always here for eachother, because we dont know how long we shall be carers. What do people do to cope? Well some friends of mine suggested studying with library books/correspondence maybe, useful for someone who is at home a lot and also sitting waiting around the hospitals...something like History of Art, history? The classics? Interior Design? the list is endless for home study and gives you something meaningful to enjoy for yourself which you COULD also share with those you love if they like to look at the pictures and maybe even would quality you for a change of career someday. The way life is going with financing old age i would definitely wish to job hunt in my 70s/80s if i had great health but if i was still a carer by that age i would at least have my "dreams" about what i wanted to do that i had studied towards and having dreams of good things you want to do is better than feeling like a vacant , lifeless drudge which understandably can happen really quickly. Be good to yourself, take time out whenever you can and carry on with the sterling caring!!

[nogginthenog]

I found this document fairly helpful - its guidance for doctors but does say its useful for the lay person in understanding what is a difficult decision

http://www.gmc-uk.org/static/documen...nd_of_life.pdf