Coping when doctors keep saying an elderly parent is near the end

[TheMerryAquaBird]

DF is 78, bed bound, and has dementia, has been in very poor health for years. DSis and i were told a year ago that he had around 3 months to live, and to place him in a nursing home with that understanding, which we did.

Since then, I have lost count of the times Drs have told us he's not going to make it. 3 times in the last month, he has been in A&E and they have phoned to say he won't last the day or he had had a 'terminal event'. We drop work, kids, rally the family to say goodbye, but within 24hrs each time he's sat up in bed, about to be discharged, Drs nowhere to be seen.

I hate myself that every time they phone I feel relief, and then despair when he's ok. I love him, but it's an unbearable situation which I don't belive will ever end. I told DSis I won't be going to the hospital again, I don't believe the Drs anymore and I can't bear it, but she doesn't agree.

I don't see how you can live like this without becoming desensitised - how else do you cope?

This is really terrible and traumatic and it is understandable that you want relief for yourself and your father. Can you ask for no more transfers to hospital? What is on your father’s RESPECT form regards this?

Oh op that sounds really hard for all of you.

Have you spoken with family and medical personnel regarding withholding medical intervention in end-of-life dementia care? Basically making sure that your father is calm, comfy and that his quality of life is in focus rather than activity trying to extend his life medically.

He must be so disoriented by all of the hospital visits.

I am so sorry that you are going through this 💐

We experienced this last month. Just went arrived for Easter hols & got the call just as we'd settled in that FIL 'wasn't going to survive the night'. Raced home & by the morning he was sitting up in bed. I was, and still am, extremely angry as our short holiday, that I desperately needed, was cancelled (with no refund) and he was fine, as usual. The doctors are nowhere to be seen. DH spent our 'holiday' at the hospital while I acted as hostess with food, bedding, etc. to the family who also rushed down. Similar happened before we left for an abroad holiday last year (thankfully a false alarm). We've been through it many times. He's weak now, off to age care & I'm considering cancelling our big holiday later this year because I'm so frightened of it happening again. He could languish for years, but I expect many more false alarms.

You get over it, I think. It's the emotional strain of up & down. You just want it to be over. For everyone. I'll be crying tears of relief as we went through this will MIL right before FIL, and I'm definitely desensitised. I just want to live again.

He has a DNAR and Respect form, completed when he had capacity, which allows for ward based interventions to improve his quality of life - but the Drs used that to justify surgery a few weeks ago. I know in my heart I would feel relief if he dies so don't want to argue with them as I feel like I'm killing him. The NH phone an ambulance whenever there is blood in his urine so off he goes to A&E for hours. The only silver lining of dementia is that he doesn't seem to remember.

@MermaidMummy06 I'm so sorry your holiday was ruined. We've not booked a holiday for a year expecting the worst, we took our house off the market when we were told 3 months as I didn't want to deal with death and a house sale. Now we're totally stuck and my children's childhood is being eaten away being told to wait.

There's another thread just now where people are saying this goes on for years and years, but I don't think I can cope with another month of this, let alone a decade, dear God.

I looked after my grandad who had severe dementia and it brought on epilepsy which tended to look like a stroke. After the last time he was admitted to hospital a &e for a stroke which wasn't I had a frank discussion with the NH GP. I said he had no quality of life, if he had had a stroke surgery would be a waste. Therefore as he was in a nursing home was there any reason in future to send to hospital. It was distressing for everyone. The Dr agreed we stopped all but essential medication and let nature take its course with the full backing of the home. They had all the end of life meds and I stayed by his side once he wasn't talking fluids etc. I would speak with the honest doctor. X. Sorry it's an awful time. X

It’s a terrible period. 💐 for you.

In this I think the GP is your best ally. They are the ones who can stop a care home sending someone to hospital and who can at least most of the time stop antibiotics being given (the danger is an out of hours locum - my mums GP put flags about ‘no antibiotics’ everywhere he could think of on the notes). The care homes need a medical say-so or they will always react defensively- apart from anything else they rarely have enough staff to care for someone requiring additional input.

You have to fight. I wish it weren’t the case but you have to; this is terrible for everyone. You know your parent wouldn’t want this. It doesn’t mean that the deathbed vigils stop completely (we had five over two years, which doesn’t seem like a lot compared to you, but I feel like each one knocked six months off my life expectation tbh). But it at least makes it less likely that your loved one will be medically assaulted in this way. We had several tense meetings with GPs and nursing home staff but we got there in the end. No hospital admissions; absolutely no ‘short course’ antibiotics allowed to be given without GP approval (some nursing homes can do this, get it stopped); no treatment of any kind without consulting you. And hold your nerve when they call you.

we had this a few times with DF and it is awful. I think they tend to err on the safe side of letting the family say goodbye but it's utterly exhausting.

Agree with @PermanentTemporary about stopping interventions.

@MermaidMummy06 We got to the point that we were bloody going on that plane whatever was happening with DF. Be wary of putting your life on hold.

One of my most frustrating times was when we were away and my "D"M tried to phone us to say DF was struggling to breathe. Checked with my sister and he was fine. I think on some level she enjoyed the big fusses and attention around possible EOL events, which was horrible to deal with.

Nothing to offer but heartfelt sympathy. I have been there and it gets harder and harder every time.

My friend has just lost his Mum. She was in a hospice, and he must have had 6 of those phone calls.
But, they also had a phone call from the hospice that she had ‘perked up’, so they might send her home.

Poor bastard. It’s not right for the hospice staff to be so laissez faire with their patient’s families.

He looks dreadful, at the moment, bless him.
I think a lot of his friends are expecting him to go straight back to the old Peter, after all this.

When my Dad had pneumonia aged 91, we were told he was going to die and all medication would be removed and he would not be sent to hospital again. He was placed on palliative care/active dying.

He returned to the Nursing Home and lived for another 9 months with little food, minimal liquid and zero medication

His strength of will made him live because he was scared to die

In the last 2 weeks of his life he was given a morphine (plus other medicine) infusion, constantly given in a box attachment (top of his arm).....sorry, I don't know the medical terms

When he did die he waited, determinedly, until he was completely alone

He was an extraordinary human being and I miss him every single day

I’m so sorry, @CheeseAndTomatoSandwichWithMayo

It's a horrible situation op, personally if I had power of attorney for health I'd be telling them not to intervene further if he had another health episode.

It's not killing him, his body is literally trying to shut down and die and the medics are intervening in that and keeping him going. He doesn't have any quality of life, it's no way to live really.

It's why there's so many people living till an older age these days when their body is trying to give up and would have 100 years ago, it's a negative of modern medicine, people should be allowed to die with dignity and made comfortable to do so.

We have had three parents die in the last few years and the end stage is mental torture, the conflict and roller coaster of feelings is exhausting and you feel like you're living life in limbo, especially with dementia because you feel on one hand like you have already lost them. Im so sorry you're going through this and hope he is peace at soon.

I’m at this point. I’ve been told many times that DF has hours to live. My boss joked last time that it probably wasn’t going to happen as his FIL had been near death so many times, and he was right.

I have said that whatever happens I’m getting on planes etc as I can’t live in limbo. As PP have said, you do get desensitised

Thank you @ChimpanzeeThatMonkeyNews ❤️❤️🥰

I didn't mean to make this about me, but it all came out !

I think @TheMerryAquaBird, that whatever happens, your Dad will do what he wants to do. If you ask for medication/food to be removed, he might choose to live anyway. I'd definitely request no hospital attendances. There seems little point.

Sorry to give an example relating to me, again, but during the 9 months Dad was dying, he fell and knocked his head badly. The NH suggested hospital, we said no. He lived on, God love him!

This exact situation lasted 3yrs with my DF. It’s awful 😞

We went through similar for a 6-7 month period with a family member and like your situation there was significant decline before that. You have my upmost sympathy.

It is an absolutely awful time. The stress is very difficult.

We got into a bit of a stride with a pretty set in stone visiting routine and just tip tapped away but we did have a separate awful time with one other relative who wasn’t coping and was just so difficult to deal with through out.

I would say that 2 out of 3 of the children felt as you suggested with a tonne of relief mixed into their grief. I think that is completely normal in these circumstances.

Hard one OP.

Its very difficult to judge when someone is about to die - even Palliative care doctors often get it wrong, and they are supposed to be the experts.

I'd echo Forty85 - if this keeps happening if it were my family member I'd update the Respect form to not wanting further hospital admission. This is a reflection of the stress it is causing both your dad, and his family.

Its natural to be scared of death, but it comes for all of us. This is my opinion of course, but if my family member had a good innings, I would prefer for them a dignified death in peace rather than fighting the inevitable until the bitter end.

You definitely can speak to his GP and ask for the ceiling of care to be oral antibiotics and not for hospital admissions.

This is what I would do in these circumstances.

Just go on your holiday comfortable with the idea that your loved one could pass when you are away.

My husband's mum has been bedridden with dementia for 3 years. She is quite unresponsive now. We have been on holiday abroad during this time. My husband visits his mum before we go (he visits several times each week as they are local). He knows she could pass while he is away and is comfortable with that. He has been letting her go for years now and has kind of adjusted.

We had this with DH's grandad. I think it happened 8 or 9 times over the period of 1.5 years before he actually did pass away and by that time all everyone felt was relief.

Is there a power of attorney in place or whatever it’s called? Can you request no more hospital treatment?

I've commented on these kind of posts before. The frail and elderly don't seem to be allowed to pass away peacefully nowadays. I saw this in a recent visit to a large A&E department. As we walked through the corridor there were about 14 trolleys lined up, all with tiny, frail little bodies , all on oxygen tubes, waiting to be seen. I heard one relative say that their mum had been on that trolley for 3 days. Its horribly undignified and shameful.
Until around 20/30 years ago, a hip fracture would be the end for the very elderly. I visited an old family friend who had fallen and broke their hip. Lying in a hospital bed for about 3 days, pneumonia set in and took him.
Fast forward to last year, DHs 95 year old aunt broke her hip. Taken to hospital, surgery for the broken hip. She could barely walk even before the fracture. She was dead within a week...... it made me wonder whose decision it was to operate on someone in such a frail condition. Even before the fall

The problem is that medical professionals are concerned that they will be accused of killing an aged person who is really reaching the end, and have to face a police investigation if a complaint is made. Many years ago when I was a student, I worked in a geriatric hospital for the summer. I'm convinced that some very elderly people were given large amounts of meds which probably did shorten their lives. The patients did need lots of pain relief and a bit too much wasn't really noticed.
OP, I'm sorry you are in this situation, it's really stressful and sad for you. I wish you well.