I am struggling to make a decision

[jack1968]

My father was diagnosed 15 months ago with dementia, alzheimers and picks disease and the speed of deterioration has been frightning. After going into hospital with a urine infection in the space of 2 days he went from being able to eat/drink normally to refusing most of the time. There have been numerous tests and there is no physical reason why he can't swallow and I have read that it is part of the last stages.In 8 weeks he lost 3 stone. As a family we made a decision that my 70 yr old mother could not cope looking after him and we found a fantastic care home for him. However, he has continued to refuse a lot of food/drink and in the last 2 days has refused all food/drink. The care home have asked us to make a decision whether we want him to go to hospital to go on a drip. The move back to hospital I know that my dad would find traumatic and part of me realises that it would repeatedly happen. Hwever, if we say no to hospital we all feel that we are effectively condeming him to death. I wonder if anyone else has similar experiences.

[hiedicat]

Hi Jack, what an awful dilemma, unfortunately i don't know what to advise but maybe the care home could ask the GP/doctor to talk to you. Did your father write an advanced directive? Did you ever discuss this type of scenario with him, ( possibly not if his decline was so rapid). Your heart will know what decision you need to take.

[jenniferpa]

Hi Jack and welcome to Talking Point, although so sorry you had to find us in such an awful situation.

It's an almost impossible position to be in, but if I were you I would be thinking: "what do we hope to achieve with a drip?" A drip might extend his life or it might simply extend the dying process. Alternatively, it might actually allow him to improve and achieve some quality of life.

I do think it's very difficult to be as clear sighted about this as perhaps you would like to be. Personally, I'd be looking for some reassurance that he wasn't suffering, and I would also avoid hospitalization if at all possible: in my experience a hospital is not a happy place for a person with dementia.

[Onlyme]

Our family have made the heart breaking decision not to return Mum to hospital when the time comes for drips and for her to stay in the nursing home with the staff she knows.

[ggma]

There is no easy answer for you, only that whatever you decide as a family you all have to live with the decision and whatever the result is. Others have made such good points above, I hope you find them a help.

Our Mum made us all aware long before Dementia took a hold, what her wishes were in the event of such an event happening, it was a considered decison and based on her life long views. So as a family we all know her wishes.

Not everyone shares their views as our Mum did, but if you can relate the decision to the way your Father lived his life it might help you.

Best wishes and my thoughts as you have to make such a difficult decison.

[matlor]

We had a similar decision when my mother moved into a care home and refused to eat and was drinking very little. In hospital she had the iv every time she became dehydrated. We were asked if we wanted to move her back to the hospital but we thought she needed to settle down in her new environment. In the home she has started to drink more although she still refuses to eat. The outcome is no worse. She periodically takes herself to bed and sleeps for a day or two and it is difficult to wake her long enough to drink even and will not eat. This has been going on since January.

[lin1]

Hi Jack

I am so sorry to hear this, It must be so distressing for you all to see dad like this, let alone having to make such a decision

I cant help with your decision, I dont think I would have sent mum to hospital but as I was never in that situation I really dont know for sure
I do know however that if I knew it was mums time, I definately would not let her go to hospital

I do have some suggestions though

speak to dads gp asap, their are some very good meal suppliments available that r high in calories in small amounts and you may want to sort out pain relief

if your dad has a sweet tooth I can reccommend those my mum had, Resource dessert energy, they are like a small pot of flavoured custard you see sometimes people with dementia, sort of get out of the habit of eating, dont know when they r hungry ,get tired while eating , so need to be gently persuaded to eat a little but very often

feeling ill can also make a person go off there food, so will a sore mouth/throat pain could do this as well

Maybe dads taste has completely changed, could it be that dad only wants sweet food ?, this happened with my mum seemingly overnight

I apologise if my suggestions are wrong for your dad

I am adding a link to admiral nurses, these are specialist dementia nurses
you may find it helpful to talk to them, unfortunately most of the uk does not have any BUT they do have a national helpline
http://www.dementiauk.org/what-we-do...ursing-direct/

[Witzend]

My father was diagnosed 15 months ago with dementia, alzheimers and picks disease and the speed of deterioration has been frightning. After going into hospital with a urine infection in the space of 2 days he went from being able to eat/drink normally to refusing most of the time. There have been numerous tests and there is no physical reason why he can't swallow and I have read that it is part of the last stages.In 8 weeks he lost 3 stone. As a family we made a decision that my 70 yr old mother could not cope looking after him and we found a fantastic care home for him. However, he has continued to refuse a lot of food/drink and in the last 2 days has refused all food/drink. The care home have asked us to make a decision whether we want him to go to hospital to go on a drip. The move back to hospital I know that my dad would find traumatic and part of me realises that it would repeatedly happen. Hwever, if we say no to hospital we all feel that we are effectively condeming him to death. I wonder if anyone else has similar experiences.

This is horrible for you, but if it helps at all I've been through similar with a much-loved aunt last year. At nearly 87 she was very ill with the umpteenth urinary infection. Everyone else who might have been asked (my siblings and cousins, she had no children) was away, and the care home phoned to ask whether she should go to hospital (to be put on drips etc, since she was refusing food and drink) or basically be left where she was to die. She had had so many of these infections and the CH told me that it had taken them 4 months to get her 'right' again after the last. Because of her incontinence it was only going to happen again and again.

I felt awful being asked to decide such a thing. I spoke to the GP, who was wonderfully nice, and could only ask what he'd do if it were his much-loved aunt. He said he'd leave her where she was - it would be traumatic to move her to hospital and have her poked about by strangers - at her age and given her state of dementia it would be kinder to let her go since it was only going to happen again.

That didn't stop me feeling awful, esp. since I was unable to contact her sister in Canada, a sister she was very close to. I had to make a more or less instant decision.

However, she was left in the CH and I and a cousin spent a lot of time at her bedside during the following few days. The CH staff were extremely kind and it was quite clear that she simply wanted to be left in peace to drift away. Staff were often trying to wake her to give sips of water, teaspoons of yoghurt, etc, - but very clearly she didn't want any of it, just wanted to be left quietly to sleep. She did not seem to be in any distress at all. I did not feel at all bad afterwards, the GP was quite right that it was the kindest thing and I would do the same again.

When I finally managed to contact the sister in Canada (an ex nurse) she said I'd done exactly the right thing, my aunt hadn't been happy at all and it would have been cruel to force her to go on a bit longer, only for the same thing to happen again.

I do feel for you - it's such a worrying and horrible time.

[Sox]

Hi - we have just been through a similar dilemma with a 91 year old sister-in-law. She has had dementia for a number of years and has been in a nursing home for 9 years. She has no family other than my husband (brother) and sisters. She had pneumonia in February, was treated with antibiotics and "recovered" - except I wouldn't really call it recovered - her life was nothing from then on - she refused to eat or drink, lost so much weight she was like a skeleton. We got called to the NH 2 weeks ago to say she had a chest infection and had refused any treatment from the Doctor, was still refusing food and drink and what did we want to do. Fortunately all the family decided that it would be best for her to stay in the NH where she was comfortable and well looked after and to give her lots of TLC. She improved slightly at the weekend and had 2 cups of tea on the Monday morning and passed away peacefully on the Tuesday morning. It is a horrible situation to be in and no-one can tell you what to do, you just have to make a judgement on advice given by the medical profession. Fortunately our decision was the correct one - you just have to balance what their quality of life will be. Good luck. Sox

[jack1968]

Thank you everyone for your kind thoughts and messages - I wish I had heard about this forum 15 months ago! It is certainly helpful to talk to people who have been/or are going through exactly the same experience. I am still trying to make a decision and I know that I will have to make it soon. Just hope I make the right one..........................

[Mun]

jack1968,
You will (BIG HUG)

Val x