Help, Dad's dementia is going to kill him and me

[burfordthecat]

Dad remains in hospital and still no answers

Hi

Today is day 7 for dad in hospital. He is still "under investigation" with regard to fluid on the lung. So far, he has had blood tests, x-ray, sample of fluid tested in the lab, CT scan and ultrasound. As of this morning, still no answers After the CT scan yesterday was inconclusive, dad's consultant has asked the respiritory (sp) consultant to see him and attempt to provide a diagnosis.

I will be seeing dad tomorrow and hopefully will be able to get some more information.

Just out of interest, who do I need to ask in the hospital about CC and what then happens?

 

[Grannie G]

Im glad your father is being thoroughly checked out Burford.
I have no idea about CC, sorry, but I`m sure others will.

 

[Sandy]

Hi Burford,

Sorry to hear that there is no more progress in getting a diagnosis on your dad.

When my FIL was in hospital, we raised this with the hospital social worker who was managing his discharge as he could not return home.

As your dad already has a social worker (does she know about his admission to hospital) he may not be referred to one in the hospital's system.

I would have thought that the most direct way to raise this is to put it in writing and give copies to the consultant and the Ward Manager.

Here are two factsheets that apply to the discharge process and NHS Continuing Care:

http://www.alzheimers.org.uk/factsheet/453

http://www.alzheimers.org.uk/continuingcare

It sound like the first step is for a member of the medical team to complete The Checklist. If that indicates a person has a high enough level of need, they are then given a full assessment by a multi-disciplinary team. Also, there is a fast-track system for people with terminal illnesses (i.e. less than 6 months to live).

Keep us posted.

Take care,

Sandy

 

[burfordthecat]

Things go from bad to worse

Hi

Whilst I was visiting dad today at the hospital, I knew something was wrong. Normally, you can't find a doctor to speak to for love or money. Well today, two doctors said that they needed to speak to me.

I was taken from dad's bedside to a private room. The doctor explained all of the tests which dad had undergone and all the results which had been obtained.

Long and short of it is that dad has secondary cancer in his spleen (they think!)

I asked if it is secondary cancer where is the primary. They answered by saying that they did not know.

As a family (OK mainly me, as I seem to be the only sibling who actually cares about dad), we need to decided whether dad is to have any further intrusive investigations and treatment or whether we should just go for palliative care.

Not a good day today, all things considered.

 

[Sandy]

Hi Burford,

What a shock!

I'm so sorry that you, your dad and the rest of your family are now facing this news.

Sometimes, it feels as if being burdened with dementia should give your loved one some special shield to protect them from any other health crisis.

It's important to take your time and not feel rushed into any one option. Have the doctors/you discussed this at all with your dad? Could he cope with even a watered-down version of the choices?

Take care,

Sandy

 

[jenniferpa]

Burford, I am so sorry. I really don't know what to say. You're close to your dad - if this had happened before the dementia, what do you think his choices would have been? I imagine that you are stunned so you probably haven't been able to adequately marshal your thoughts about this. As Sandy says - don't rush into anything.

Love

 

[Grannie G]

Dear Burford

What a terrible shock for you. I`m so sorry. You know in your heart what will be best for your father and as Jennifer said, you will also know what he would have wanted for himself.
Having a secondary cancer, I just wonder how much he knew, all the time he lived at home and refused help. You may have your answer just thinking about it.
Take care xx

 

[Skye]

Dear Burf

What terrible news for you, I'm so sorry.

And what a terrible decision to make. Take your time over it, you are going to have to live with it for a long time, whichever way you decide to go.

I'm sure the doctors will have given you lots of information, but they can't help with your emotions, and that's the hardest part.

In your position, I'd let nature take its course, but that's not advice. I wouldn't presume to offer advice on something as big as this. It has to be your decision, when you're ready.

Love and hugs,

 

[gigi]

Hello Burf

I'm so sorry to read to read your latest update on your dad.

And that you now have to make such a decision...I'd be inclined to leave well alone..further investigation may be traumatic for dad.

Take your time and discuss it with the family. Is your husband home yet?

You've had a lot to cope with since he's been away...thinking of you and sending you a hug.

Love xx

 

[nellbelles]

Burford

So sorry to hear about your dilemma, not an easy decision to have to make for someone else..

But we all know that without understanding our love ones can only deal themselves with so much intrusion.

 

[connie]

Dear Burf, how very sad for your dear dad to have this further blow. I realise that you, and the rest of the family, may have to help make some decisision. As others have said 'please take your time, dont be rushed'.

Thought Helen's words very true though:

But we all know that without understanding our love ones can only deal themselves with so much intrusion.

Take care now. Love n'hugs

 

[julieann15]

Hello Burford
So sorry to have just read this news and that you now have such a difficult decision to make.

Thinking of you

Love Julie xx

 

[Canadian Joanne]

Dear Burf,
I'm so sorry about your dad's cancer diagnosis. I can only echo others in saying get all the information, think about it as calmly as you can under the circumstances and take into consideration what your dad's opinion was on these matters when he was well.
Love,

 

[ella24]

Burf

just to say I'm thinking of you

e

 

[DeborahBlythe]

Oh Burf, I am so very sorry to read this thread, and sorry to have fallen out of the loop of your news for some time. I'm guessing that further investigations might help the medics estimate a prognosis and possible treatment? Your dad is not very old, is he? On the other hand,if they can just keep him comfortable, that might be the better option. Palliative care is quite advanced these days. I'm thinking of you and sending you love and hugs. xx

 

[roundy]

I am lost for words,so sorry to hear your news. I read your posts all the time and my heart does go out to you.
I will be thinking of you and your dad.
Lisa.xx

 

[burfordthecat]

Hi

Thank you all for your support. Well, as of late yesterday morning, it was "all change". During my chat with the doctor on Thursday, it was agreed that "the family" would decide what happens next and that I would have a meeting with the consultant on Tuesday to say what our decision on treatment was and to ask any questions which I needed answers to.

So, what happens? I get a phone call from my brother late Friday morning to say that the hospital are discharging dad. Apparently, the respiratory consultant had reviewed dad that morning and classed him as "medically stable". He also stated the "he" had decided not to do the invasive investigation as it would put dad at risk. (so much for family having input). Then, my brother rang to speak to dad in hospital (first time in 8 days), the junior doctor asked my brother if he was next of kin. He also asked if we had decided what to do with regard to dad's treatment. My brother said, yes, he thought that palliative care was the way to go. At which point, the junior doctor said, "right, no point your dad staying in hospital then, I will arrange for discharge". I can't believe that such a decision/information can be accepted over the phone, from a "stranger" who has never rang before and has never made the effort to do a hospital visit. Whereas me, as noted next of kin, visiting regularly, does not even get a phone call and it looks as though I can kiss goodbye to the meeting with the consultant because, once dad is discharged, they are not interested. I have also been told that dad will not be followed up by the hospital and it will be down to the CH to monitor dad with regard to fluid build up and breathlessness. The whole situation I feel is totally unsatisfactory, but really not sure what I can do about it.

BTW, dad's missing toiletry bag is still missing (now day 7) and I will need to replace it ready for his return to the care home this afternoon. Along with that, there is a missing pair of sippers and missing pyjama bottoms. These trips to hospital are very very expensive.

 

[gigi]

Hello Burf..

You don't have it easy, do you....

It sounds as though the hospital want dad out as it's a Bank Holiday... and I suppose in their eyes if they're not actively treating him he may as well be discharged.

With regard to the fluid build up...surely they can't just wash their hands of him? Someone will have to take responsibility for "managing " his symptoms...the CH might be able to monitor them..but I doubt if they have the facilities to treat them.

I'd be inclined to talk first to the CH manager..ask to see the discharge letter. And next week phone the consultant's secretary and express your concerns...

Keep a note of everything in case you decide to make a formal complaint...

Hope dad settles back into the CH quickly..

Lots of love xx

 

[DeborahBlythe]

Burf, this sounds all so wrong to me. Can you ask them to keep your dad in at least until Tuesday as you expected? It sounds like a classic case of the left hand not knowing what the right hand is doing. No wonder you are vexed. Unless you find it easier to go with the flow, I would ask, today, to speak to the duty manager for the hospital and put your feet down very firmly.I would ask to see the discharge letter today, at the hospital.
I would be surprised if the CH will be able to cope. Bank holidays are not great times for CHs to adapt their care plans, from my experience.

Very sorry indeed to read this development. Sorry I cannot be more help. Love Deborah x

 

[Canadian Joanne]

I would firmly point out to the hospital that you should have been consulted as noted next of kin. How would they know that someone on the end of the phone is even related? That junior doctor needs to go back to school.

I would at least write a letter and complain - nicely but firmly.