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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to be sad my Dad is facing a future with dementia [title edited by MNHQ]

87 replies

chickensaresafehere · 29/04/2016 08:39

Dad has dementia,it's fairly advanced. He was sent for a chest X-ray by gp ( but had no symptoms),then a CT scan which showed a mass in his left lung,he had a sample of fluid drained from his lung,to be tested to see if it was malignant.
Consultant said if it was it would not be treated due to his dementia. Mum & I were prepared for it being cancer & I would have preferred my Dad to die from lung cancer (obviously with nursing & pain relief) as opposed to everything shutting down & him being unable to move or swallow & dying an undignified,horrible death.
We went to see the consultant yesterday about his results & it turns out he hasn't got cancer,just infected fluid on his lungs.
I feel sad & cheated, that's shit isn't it I should be celebrating the fact that my Dad is cancer free ?

OP posts:

KitKatCustard · 29/04/2016 08:44

Sometimes the best we can wish for is a good death. You're not in any way wrong to feel sad and cheated and having been through similar, I can absolutely see your side. Wishing you peace.

Tessticklesyourfancy · 29/04/2016 08:45

NU. I understand your thinking. Dementia is cruel and not something that can be managed easily. Not for a moment saying cancer is easy or a good solution either, it's so hard to watch a person you love suffer. My dad has Alzheimer's and it's turned him to into a different person.

crje · 29/04/2016 08:46

YANBU

Dementia is shit

Clandestino · 29/04/2016 08:47

I was shocked to read the first line but with all those details I get it. You'd prefer a relatively fast and pain-controller death for your Dad which would maintain at least a bit of dignity he has left.
I am sorry that the circumstances you can't influence left you feeling like this.

Shakirasma · 29/04/2016 08:48

I understand, but yes YABU

I can see that what you want for you dad is a peaceful, dignified death. But you don't get that with cancer I'm afraid, particularly something like lung cancer.

HawkEyeTheNoo · 29/04/2016 08:50

My mum has stage 4 lung cancer, it's not dignified nor pain free. I understand where you are coming from, but I think YABU.

limitedperiodonly · 29/04/2016 08:51

I understand how you feel

heatseeker14 · 29/04/2016 08:52

YABU I have recently watched my MIl die from lung cancer, I wouldn't wish that on anyone it was horrific. I understand that you don't want your Dad to suffer any more, but lung cancer isn't a nice way to go.

TooGood2BeFalse · 29/04/2016 08:52

My mum died of lung cancer at 55. I'm sorry to say it was a very agonising way to go and I wouldn't wish it on anybody, so I'm afraid you are being understandably unreasonable.

I can't imagine what you and your mum are going through however, and I'm so sorry for all of you. Sending you thoughts and hugs.

Original poster

chickensaresafehere · 29/04/2016 08:53

But you don't get that from dementia either.
Which one is the better of two evils?
I'm so angry,this isn't how he wanted to end up,even though he is mostly oblivious to it. I'm sure the tiny periods of lucidity must be terrifying for him.

OP posts:

PurpleDaisies · 29/04/2016 08:54

So sorry your dad is ill-dementia is a horrible thing for relatives to deal with. I can understand why you'd want him to have a different illness.

Unfortunately death from cancer isn't the dignified end you're thinking to to be. It's often difficult to control the pain. The portrayal of cancer death on tv where the person effectively just goes to sleep with all their relatives watching on doesn't often bear any resemblance to the reality.

for you.

Samcro · 29/04/2016 08:54

what ever your thinking starting a thread saying that is sick.
both my parents died from cancer, its not a good deathits fucking awful.
watching someone you love fade away is never nice but you are vu

Imnotaslimjim · 29/04/2016 08:55

I understand, I really do but as PP's have said, cancer isn't the kind, pain free death its made out to be in the movies. In the weeks up to death is brutal and debilitating and terrible to witness. I'm not saying that dementia would be any kinder and I'm sorry you have to go through this

MadameCholetsDirtySecret · 29/04/2016 08:55

I totally empathise. My DF has late stage dementia too. He can't speak or understand much and is sleeping a lot of the time as well as all the other indignities that go with this horrible disease. He was a very clever articulate man and it is heartbreaking to see. I feel wicked when I think it would be so much kinder for him to fall asleep and not wake up. 💐To all who are walking this path.

peacheshoney · 29/04/2016 08:56

I think there are better ways to die than from cancer

PurpleDaisies · 29/04/2016 08:56

Which one is the better of two evils?
That's really hard to answer, but bone pain from metastatic lung cancer isn't something I'd wish on anyone.

Arfarfanarf · 29/04/2016 08:58

This reply has been deleted

Message withdrawn at poster's request.

Figmentofmyimagination · 29/04/2016 08:59

Dementia can bring all sorts of related physical complications that you are not expecting. By the time my mum died last year aged just 82, her tummy was swollen to the size of someone expecting twins and she couldn't breathe. She kept being admitted to hospital to have brown fluid drained from her tummy - like the man with cirrhosis on the recent Louis thereau programme about alcoholics.

After the fluid issues started, she died within about 9 months. The best you can do is to make sure he has the very best nursing home palliative care, preferably somewhere where they are set up to do draining etc without going backwards and forwards to hospital. My mum had NHS continuing care (ie 100% free nursing and residential care) for the last 9 months. Make sure you apply for it. Dementia on its own is not enough, but the symptoms you describe are enough. The worst part was her experience in hospital, because they are unsurprisingly not set up to deal with dementia patients on a general ward. It was just terrible.

Original poster

chickensaresafehere · 29/04/2016 08:59

I'm so sorry to those of you that have lost loved ones to lung cancer.
I appreciate your postings about it & I do realise that death from cancer (of any kind) is not peaceful & pain free.
I have just lost my sister in law to bowel cancer at 47.
I need posts like that to kick me up the arse. But it still doesn't stop me feeling angry.

OP posts:

Potatoface2 · 29/04/2016 09:00

you would have preferred your dad to die from lung cancer, opposed to everything shutting down, being unable to move, swallow and dying an undignified horrible death.......my poor mum has just died from lung cancer....she had it in her bones, liver and brain as it had spread everywhere...she couldnt move, she couldnt swallow, she died last weekend....it was painful for her up to the last minute, despite being on the maximum amount of pain relief and medication to stop her being agitated....it wasnt a peaceful death....so i really dont understand your post....i watched an aunt die from dementia, that wasnt a paticularly nice experience either.....i feel for you, but to die from cancer isnt preferable to dying from dementia......im crying as i type this as i cant get the last day of my mums life out of my head

purplefizz26 · 29/04/2016 09:01

Dementia is horrific, but at least the patient doesn't know what is going on in advanced stages.

My Gran has it. She would be mortified if she knew what was happening to her body, that she was having toilet relate accidents, being spoon fed etc.

Obviously i would rather she was fit and well full stop, but I see it as a small blessing that she doesn't know what is happening to her.

Cancer would be just as tough to watch, but the patient is usually aware, and it's more frightening and upsetting for them.

Keep strong x

MrsJayy · 29/04/2016 09:02

Yabu of course you are the pain he would endure from cancer would be horrific, dementia is also horrific there is no good way to die in this situation im so sorry about your dad watching somebody you love lose themselves and just be a shell of who they were is the worst thing I haveever experienced

Original poster

chickensaresafehere · 29/04/2016 09:05

Thanks to you all.
That's what I needed & that's why I posted (especially with such an inflammatory title)

OP posts:

BlossomCat · 29/04/2016 09:05

Gosh, I totally get where you're coming from. My dad had Lewy body dementia, a nasty disease that robs you of your mind, your body and then gives you hallucinations that terrify you.
I was so relieved when the GP's made the decision to stop treating him for the chest infections that plagued him due to his deteriorating swallow. He actually had a very gentle, dignified death at the end, and for that I was grateful.

Maybe make sure that you have an agreement with the GP what the ceiling of treatment would be. In my local area, we have TEP forms (Treatment Escalation Plans,) that outline where the limit of treatment is, whether that is no oral antibiotics, no active rescusitation, or no admission to local hospital. They involve a long chat with the GP, but mean that people do not get invasive treatment when that would be cruel and/or detrimental.
Wishing you strength for the days ahead

Original poster

chickensaresafehere · 29/04/2016 09:07

The consultant has already said they will not treat his lung infection especially if it escalates into pneumonia.

OP posts:

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