My mum hasn't eaten for 16 days, possibly longer.

[DowntonTrout]

I don't know what to do. It could be as long as 3 or 4 weeks since she ate anything solid but she may have had a bite of toast or a spoon of pudding. She is not drinking either and is now just refusing everything. She is dehydrated and very weak.

Mum has dementia, but was doing ok in her residential home. Then she had a fall and fractured her hip 5 weeks ago. She wasn't really eating in hospital but they discharged her anyway just over 2 weeks ago. It looks like she hasn't eaten since.

What happens now? If they take her back to hospital and put her on a drip she will be rehydrated, but for what? She is so unhappy, she says she just wants to die. I don't know how to help her, or comfort her. The staff have murmured about end stages but say it is up to us. I suppose they mean intervention, or not. There is no quality of life left but I feel asif we are just leaving her to fade away and die. She is 6 years into the Alzheimer's but it robbed us of my mum a long time ago.

Thinking of you

I have only just found this thread Downton. The undiagnosed and untreated UTI will have caused all these symptoms of aggression, worsening confusion, and refusal to eat. This is exactly what happened to my Mum. As I said in the thread about moving Mum refused to eat and drink for ages while in hospital and after moving to new nursing home. She eats a little now, but we have decided no more hospitals or invasive treatments. The home has explained about palliative care and what will happen. If the hospital can treat the UTI witn IV anti Bs you will see a big change.

They can't use IV anti-b. Mum is too agitated for a drip. It is a vicious circle. She screams and shouts as they have to pin her down to inject the sedative. She tries to hit the nurses. Even sedated she will pull the drip out.

Sounds just like Mum was - they sedated her for a couple of days in the end to give the IV antiB chance to work. Even then they had to put 3 lines in. She gave one nurse a black eye but they were very good about it. She has had more infections since being in this nursing home, but they seem to recognise the signs more quickly and get antiBs for her at the first symptoms.

So horrible for you Downtown. The support and care given to old and ill people is pretty shocking.

My mum has dementia too and is in a nursing home. She is not aggressive but doesn't eat much and is very prone to UTIs. The home she is in seem great and my dad visits most days but she is deteriorating and to be honest we are hoping she just slips away. Unfortunately Mother Nature seems to be very cruel and it doesn't always happen that way as you are finding.

Hope you can get some resolution soon, Downton, please don't feel guilty, you are clearly doing everything you can with what us am awful situation. Fwiw, I think there's a place for euthanasia - medical advances seem to keep people alive way beyond when they should or would want to be.

Downtown. I know she can't tell you this, so I want to- you are a wonderful daughter. You are not shying away from the hideousness, you keep getting back up in there and loving her and fighting for her.I believe if she were able to be in her right mind she would be so proud of you and so grateful to you. If, God forbid, I ever find myself in her position I hope my children are half as wonderful as you.
Praying for her, and you, to find peace.

As an aside, I've noticed a common theme in a lot of these threads regarding siblings and the care of elderly parents.

A lot of the time one seems to take charge and the rest are happy to take a back seat and let them get on with it, paying minimal visits to the parent in question and (presumably) thinking that the 'lead' sibling is happy to do everything or that the parent is at least getting regular visits. As opposed to sharing the load.

I know this is not the case in all families but I've seen it often enough to be thankful I'm an only child.

I'm sorry that some of you are in this position as if you didn't already have enough to deal with.

Mother Nature is cruel. I just hope that care and end of life pathways improve. We all love our parents and only want what is best.

To be honest, if my brother or sister were to take charge I would step back with out a moments hesitation, and let them.

When this all blew up last year and mums partner died I think that they kind if assumed that I would take mum. As I have said before, I did this for my dad, I would not do it again. I have a DH and DCs. It affected all of us. Neither of them are married or have DCs. I have the biggest house though, so theoretically it would make sense.

But with dad, he was end of life, heart failure. There was a limit to how long he would last, but he was still able. They murmered about feeling guilty for not doing/ visiting more. My sister said she would like to take mum but didn't have the room. I had a great relationship with my dad, mum and I were astranged for 15 years. It is not just the physical doing, it is the mental and emotional doing, and for me the ask is too much.

They could make choices, if they really wanted, to care for mum, but they don't. And that is fine, but I had to be very, very clear with them that this time, it was not my responsibility.

So I will fight for mum to be safe, comfortable and pain free but

But that is all I have to give.

I want to second what PopiusTartius said.

You are giving more than you will probably ever realise and you are a better person than you will ever admit to yourself.

Respect.
xxxxx

That's my experience too with siblings, both through work and personal life. Interestingly my Mum was local to her mother and my uncle lived about 100 miles away. My Mum was always expected to sort things out for my Grandma and she wasn't always easy to please!. When my Mum died 6 years ago my uncle started to help instead. He hadn't realised how much she put upon my Mum.

I think caring for family is an amazing thing to do. However I think it's more practical where its a physical health problem rather than cognitive. You can explain what you're doing to someone with physical health problems, get them to help where they can. With cognitive changes that's not reliable and behaviour can be unpredictable which can be worrying and at times downright dangerous, especially when you have a family of your own. I always warn people not to promise that their loved one 'won't be put in a home' because that's not always a promise that's practical to keep. What you're giving is admirable Downton. Keep going. I hope the weekend sees improvement.

Don t have anything new to add but sending supportive thoughts. My dad has alzheimers, not as late stage as your mum but it s what all of us, children of persons with dementia, dread.
I second what everyone is saying you are doing as much as you can. I think that for all the talk of neglected elderly ( which of course does go on) there is a kind of collective guilt and hankering back to the days when the elderly just moved in with their kids. But of course that was very different to the scenario many of us find ourselves in.100 years ago, my dad would have died at Least 10 years back ( of a heart attack). Instead he was brought round by modern medicine, but the oxygen deprivation which occurred may well have triggered the gradual onset of dementia.
You are right, taking your mother in was too much of an ask and you really shouldn't t feel guilty about not doing it. Your mother's dementia induced aggression is bound to trigger some kind of ( misplaced) guilt now, but really try and stare it down, it's not justified.
As for one sibling being co opted into doing the caring, while others lamely stay away or make occasional visits, I couldn't t agree more. On the Alzheimers forum they are called the " invisibles".

You are right about that whataboutbob.

Mum is 85. Her parents died 15 years or more earlier (I never met my grandparents.) I don't know how her mother died- she went first in her 60's, 50+ years ago. But I know my mum and her brothers used to have grandad to stay for a few months at a time. They shared it between them. Mum was younger than I am now. Neither of them had dementia- I think most people used to die before they got to that stage.

In those days mum would have died of the breast cancer which she had 6 or 7 years ago and which heralded the onset of dementia. Of course it's no good me trying to reason that with mum, but it helps to rationalise that for myself.

I think most people used to die before they got to that stage
Think you are right Downton
Mum has breast cancer and a natural fistula/stoma from her gall bladder. Cannot have op as too frail. She is now 90. Her parents died in 70's.
Also another thing to consider is that our Mums were maybe a lot younger than us when their parents died. I know before she got dementia Mum couldn't understand why I couldn't push her far (she used to be very big) or lift her. She said she did it for her Mum. But my Mum was only 58 when nanna died, I am 67. Those 8 or 9 years make a lot of difference.

Her parents died in 70's - I meant when they were in their 70s

Yes, pudcat. I was in exactly the same position as you, agewise. We may look younger for our age, but muscle mass still deteriorates dramatically after 60 however young you look. I couldn't have stopped my mum falling or picked her up when she fell. And I'm reasonably fit for my age.

Downton - don't feel bad about not having your mum at home. There's no way you could cope with her now. Think how much trouble she's causing the nurses. Hope she's having a more peaceful weekend.

Well I'm 44, but I have 2 prolapsed discs in my spine. Lifting anything is out.

My youngest (11) is at theatre school in London, which means a huge amount of running up and down the country for me, often for days at a time and at short notice. A DH who travels abroad a lot and no one who could step in to care for mum if I'm called away. It just wouldn't work but I can't explain that to mum. She wouldn't be able to comprehend.

She was heavily sedated today- could barely open her eyes- but she still managed to be argumentative. Asking what she was doing there, doesn't believe she has fractured her hip, doesn't believe she's in hospital, doesn't believe that the doctor sent her there. She says I am lying.

I noticed in her notes something about the mental health act section 5.2, which I think is to do with them being able to give her meds against her will as she does not have the mental capacity to understand what they are doing. I will google it.

It's worth familiarising yourself with the mental capacity act too ( if you aren't already).

Sorry to hear your Mum has had to be sedated, I hope the medications to improve the medical problems start to make a difference soon so they're no longer necessary.

I see. Section 5.2 is allowing the doctors to detain mum until assessment for section 2 or section 3 can be made?

She was heavily sedated today- could barely open her eyes- but she still managed to be argumentative. Asking what she was doing there, doesn't believe she has fractured her hip, doesn't believe she's in hospital, doesn't believe that the doctor sent her there. She says I am lying.
Just like Mum was when she was in hospital. Maybe now they can get an IV drip up for antiBs.

Poor you.

The aggression can be awful. Dementia can mean that normal social constraints not longer exist. I was assured that people closest to the individual often receive the worst treatment. It is as if the demented person hits out at the person who can be trusted to tolerate it. The issue can be that some of the things said are difficult to forget,yet the person who said them has often forgotten them and fails to realise how bruised you are feeling.

You mentioned your mother having had an operation. There seems to be a consensus that general anesthetic can speed up the progress of dementia in a significant proportion of elderly - up to 50%. And even if it does not, the change in surroundings, pain and general confusion must impact on someone who is struggling to maintain their bearings. It took months for my mother to stop yo-yoing after she broke her hip and I believe she lost a significant amount of capacity in the process. There were also some hygiene issues, now mainly resolved, perhaps because she has less pain on moving, which seem to have led to UTIs.

Early on a GP friend advised me that you can only do your best. Some decisions will be good, others may prove to have been wrong. As long as you try to do the right thing, this is fine. As others have pointed out, not everyone can cope, and many simply run.

So today I was talking to the nurse about mum having pain in her back and mentioned that mum seemed heavily sedated. Not so. They gave her one injection to sedate her the other day but that has worn off. Mum is just weak.

Very weak as in almost unable to lift her head, also her eyes don't close properly anymore. That's not a good sign is it. Incidentally she is taking no other meds and they are not forcing her so her UTI is left untreated. I said I was concerned that mum be made comfortable and she said yes, that is what they hope for.

It doesn't sound good Downton. If they are not treating the UTI they really need to sit down and have a proper talk with you as to what is happening with your Mum. Discuss with them what they will do to keep your Mum comfortable, and what palliative care they will give. Take care of yourself as well.