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

(88 Posts)
chickensaresafehere Fri 29-Apr-16 08:39:31

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 ? sad

KitKatCustard Fri 29-Apr-16 08:44:09

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 Fri 29-Apr-16 08:45:44

flowers 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 Fri 29-Apr-16 08:46:07

YANBU

Dementia is shit

Clandestino Fri 29-Apr-16 08:47:28

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. flowers

Shakirasma Fri 29-Apr-16 08:48:06

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.

flowers

HawkEyeTheNoo Fri 29-Apr-16 08:50:45

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 Fri 29-Apr-16 08:51:17

I understand how you feel flowers

heatseeker14 Fri 29-Apr-16 08:52:31

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 Fri 29-Apr-16 08:52:33

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.

chickensaresafehere Fri 29-Apr-16 08:53:13

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.

PurpleDaisies Fri 29-Apr-16 08:54:12

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.

flowers for you.

Samcro Fri 29-Apr-16 08:54:40

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 Fri 29-Apr-16 08:55:38

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 flowers

MadameCholetsDirtySecret Fri 29-Apr-16 08:55:41

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 Fri 29-Apr-16 08:56:14

I think there are better ways to die than from cancer

PurpleDaisies Fri 29-Apr-16 08:56:21

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 Fri 29-Apr-16 08:58:12

thanks It's not shit, I understand. Dementia is a cruel disease.

My grandma had alzheimer's and died of pneumonia in a nursing home. She had no idea what was happening. No idea who we were. They kept her as comfortable as possible. It was horrible and undignified.

However, I don't believe there is such a thing as a dignified death. I and the rest of the family nursed my grandad at home as he died of cancer. It was an undignified and horrible death for him. He knew what was happening as his body failed him and he waited to die.

At first he just needed to be carried from his chair to his bed, which upset him but he could cope but by the time he needed our help after a bowel movement, which made him feel utterly humiliated and everything was shutting down and he knew it and couldn't walk or talk or swallow and could only do a little thumbs up when you asked him if he was ok, even though the morphine wasn't keeping him pain free, he wasn't finding any dignity in it and neither were we.

It's horrible and it's painful all ways round. It's not that you want your dad to die, I understand, it's just that dementia deconstructs the person in front of you and it's so hard to bear.

If it is any comfort at all (comfort is the wrong word but I can't think of a better one), my grandma had no fear because she didn't understand. While it was hard and horrible for us, for her, it was not. By the time it got to that stage, the person that she was had gone. She didn't understand anything. It is undignified yes but she was spared the fear that comes with knowing you are dying. She didn't even understand 'undignified'. It is often the family that feel that pain.

I don't know if any of that is of any use at all. Probably it is not. But you are not a horrible person at all. It's a dreadful situation and horrible to be utterly powerless to help.

Figmentofmyimagination Fri 29-Apr-16 08:59:23

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.

chickensaresafehere Fri 29-Apr-16 08:59:45

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.

Potatoface2 Fri 29-Apr-16 09:00:53

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 Fri 29-Apr-16 09:01:16

flowerscake

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 Fri 29-Apr-16 09:02:21

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

chickensaresafehere Fri 29-Apr-16 09:05:17

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

BlossomCat Fri 29-Apr-16 09:05:45

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 flowers

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