Dementia has made me rethink my stance on Cancer

[Summerheather]

I must be a horrible person. My Mum lives with me and my husband and adult daughter and has done for the past 6yrs. Both my husband and I work full time and my daughter goes to University. I would say Mum had dementia since she moved in with us, but it has steadily got worse until she was diagnosed with Alzheimer's just before Christmas. I've always loved my Mum so much but I realised that she's slipped away from me until all I've got this someone that just looks like her.

Anyway, before I get too upset - after hearing about a friend who's Father has been diagnosed with Terminal Cancer, I realised I was jealous - jealous that they have a time frame, jealous that they will die knowing who they are and their family.
I am so sad that I have become this person

 

[Kevinl]

I suspect a lot of us feel that way and just don't say so, I admire you for having the balls to admit it out loud to a bunch of strangers.
Would I like to know my wife would die in 6 months or carry on with this living death for another 5, 10 or 20 years? If she got something serious would I withhold treatment just to put an end to it all. I don't think I'd want to admit what I sometime think in public hence I admire you for doing it...QED...you're not a horrible person just human like the rest of us.
K

 

[Summerheather]

I sometimes feel that I have been consumed by dementia. I read the other week that Cancer Charities last year raised over £560 million whereas Dementia and the like only £50 million and there was a part of my brain that just thinks what's the point of more people surviving if they're going to get dementia in the end, cure dementia first.

Stupid horrible thoughts, Cancer is dreadful and yet there's a part of me that is envious.

 

[Kobiandmillie]

Hi there I have been thinking of this too lately how long will my mum go on for how long can I go on working full time visiting mum every day washing feeding clothing her I worry because I'm an only child and what will happen to her if something happens to me x

 

[sistermillicent]

I think I will be gone before my mum, I think my dad will as well, it has taken a toll on both of us, it is relentless.

 

[Witzend]

I sometimes think my mother will see me out - she's 96, tough as old boots, and never ill apart from the dementia, which is very advanced. She has had it since around 2001 and is not even on any meds.
It was awful when my father died of cancer at 72, but I often think now that it has to better to go like that, when you are still yourself and have all your faculties, and everyone is really, truly sorry you are gone.

Often when I see TV ads about cancer research, when they say e.g., 'There will come a time when nobody will die from cancer,' I just think, 'Yes, great, we'll all go on and on and on, and get dementia, instead.'
I think I have seen too much of this horrible disease. So many years of it - must be over 20 now - and 3 relatives. I need to remind myself now and then that not everybody by any means gets it. It just feels like that sometimes.

 

[Beate]

You're not the only one!
http://www.theguardian.com/voluntar...er-shock-tactics-charity-advertising-campaign

 

[jugglingmum]

Every time I hear how many more of us are surviving cancer, I just think, that means more of us will end up with dementia. Not a good thought.

(posted at the same time as Witzend - and entirely similar sentiment)

 

[Linbrusco]

Mid 2011 Mum age 70 was diagnosed with Chronic Lympocytic Leukemia.
A slow growing type of blood cancer. At this stage frequent blood tests to monitor.

Mums GP said then to me " This will most likely given your Mums age not kill her. She will die from something else"
At the time I thought it sounded quite harsh

End of 2012, Mum was diagnosed with bowel cancer. A cancerous polyp, but they didn't feel it was a secondary cancer form the Leukemia.
Mum had surgery, and it was early stage grade caught early so no treatment required.

Mid 2013, Mum was diagnosed with Alzheimers. We suspect already present going back to 20112, but her surgery & GA hastened it.

Without a doubt I do beleive her Alzheimers will kill her.
Its been a steady decline, which robs Mum more and more of her ability to remember, do, say, & think. As she becomes more unsteady on her feet, and her judgement is clouded as to what is and isn't safe any more, if she doesn't have some kind of major fall, or accident...it will ultimately be the Alzheimers

My husband was diagnosed with a brain tumour 11 yrs ago. At that time he was given 3-5yrs to live. He has lived life to the full in that time with no regrets. Some great holidays and many memories made. Seen his children grow up, and achieve and accomplish many things.
He said if his brain tumour reoccurs he would take quality of life over quantity any day.

 

[Summerheather]

Thankyou so much with your replies, you've made me feel so much more normal, that my feelings aren't so awful as honest.

 

[opaline]

I feel exactly the same, summerheather, a friend's mum was diagnosed with terminal lung cancer two weeks ago (she died yesterday) and I just thought at least you know the end is in sight. My mum is 79 and there is no way I can go on with this for another 5, 10, 15 years. I'll be in jail for murder.

 

[RedLou]

My mum died in some pain of cancer that probably started in her lungs and spread to her liver and brain. She was 85/6. She'd had a great life. She died one week after diagnosis. I can honestly say the shock at the speed of it was preferable to me than watching my father crumble and disintegrate over the years. From their point of view, I don't know.

 

[CollegeGirl]

I have such mixed feelings about this subject. I know exactly where you are all coming from, and have had the very same thoughts myself.

But dying from cancer is no picnic either.

 

[Padraig]

Oh dear, I never knew there was a time frame for death. Many very young people die of cancer. Lots of other healthy people are killed or die in accidents every single day.

If there was one thing I've learned in my eighty plus years, it is to make the very best of the most precious gift we receive: time. Time is a gift to give, to share while we've given. How do you measure it? It's not for sale, or manufactured, each moment is to savoured. One thing is for certain, Death comes in many guises and prediction are just what doctors make.
A number of doctors and nurses told me my wife was dying and was 'shutting down' when she refused to eat. I'm pleased to say I ignored their advice, even in spite of their predictions entered in her medical diary. Each moment we had together I savoured aware her time was running out. Her quality of life was my sole purpose for living and as the lady Psychologist remarked when my wife finally passed: "You proved us all wrong." My wife had survived a further five years.

When our journey was over, our only son was rushed to hospital with a bust appendix. Whilst treating him they discovered he had bowel cancer. Some time later I was diagnosed with Stomach Cancer. Some days my quality of life is very poor, but in the moments I'm pain free, I rejoice and make the best of them.
We are each dealt a separate hand in life. We can either throw it in, or fight the good fight, to learn and move on the stronger and wiser from the challenges that make up life.

 

[Adcat]

Good morning everyone.
SummerHeather, I am delighted you have started this thread as you have very eloquently summarised my thoughts so your not on your own and neither am I or indeed anyone else who has responded to you.
My mother died 2 years ago from cancer. It was horrible. However, I take great comfort that I was able to help her and talk to her and discuss life, the world and the universe at 3am frequently. Throughout her illness there was always a back up 24/7 from the hospice, McMillan - just someone professional to talk to. She had to go into a hospice because her pain was out of control and dad and I moved in with her. She was very worried and anxious about my dad and I promised her I would look after him. ( I have two older siblings-nightmare).
I had no idea that my dad would get dementia. I had no idea of the implications. It's a living nightmare. I feel like a zombie. With my mother, I could give her analgesia and sit and talk to her. With dad, he wanders, he can't sleep, he gets anxious, he will wear 3 pairs of trousers, 5 shirts blah blah. I am fed up of being a dementia detective. I am fed up of the lack of support in general. I pretend I don't have relatives as they have all walked away. I am sick with worry about the future. I am sick of being a martyr to this illness and I am sick of feeling and looking like a rag.
Still, onwards and upwards as they say x

 

[Rageddy Anne]

Good morning everyone.
SummerHeather, I am delighted you have started this thread as you have very eloquently summarised my thoughts so your not on your own and neither am I or indeed anyone else who has responded to you.
My mother died 2 years ago from cancer. It was horrible. However, I take great comfort that I was able to help her and talk to her and discuss life, the world and the universe at 3am frequently. Throughout her illness there was always a back up 24/7 from the hospice, McMillan - just someone professional to talk to. She had to go into a hospice because her pain was out of control and dad and I moved in with her. She was very worried and anxious about my dad and I promised her I would look after him. ( I have two older siblings-nightmare).
I had no idea that my dad would get dementia. I had no idea of the implications. It's a living nightmare. I feel like a zombie. With my mother, I could give her analgesia and sit and talk to her. With dad, he wanders, he can't sleep, he gets anxious, he will wear 3 pairs of trousers, 5 shirts blah blah. I am fed up of being a dementia detective. I am fed up of the lack of support in general. I pretend I don't have relatives as they have all walked away. I am sick with worry about the future. I am sick of being a martyr to this illness and I am sick of feeling and looking like a rag.
Still, onwards and upwards as they say x

Sick of being a martyr to this illness, and sick of feeling and looking like a rag....Just sums up the low moments I feel too. I have a brisk friend who tells me not to winge. Well, I'M wingeing, so there! Maybe one day people will read what we said about our situation and wonder how it was ever that bad.

 

[jaymor]

I looked after my husband who has Alzheimers for 7 years at home and would have continued if I had not been told my care was no longer what he needed. After 3 weeks in an assessment unit I was told the care he needed was so complex and he was in fact given CHC with 1:1 care.

It was not until about a month after he had entered his nursing home and things were sorting themselves that I had time to stop and think and I wondered how on earth either of us survived the last three years before his move to the nursing home.

I can also remember a conversTion with his SW. I was taking my husband out everyday. It was easier to go out than stay at home. We had visited most towns and every garden centre with a coffee shop within a 50 mile radius of home. We were going round in circles and I told the SW I was running out of ideas where to go. His reply was not to worry my husbNd would be seeing everywhere for the first time every time so it was not a problem. I screamed at him 'what about me'. Driving miles everyday to visit places I had seen dozens of times, places I really did not want to go to so what about me.

I now get lots of support from the management and carers at my husband's home. They tell me to take a day off, have a rest, don't worry he is fine. They ask me what I have been doing etc. I now exist again.

 

[Neph]

Every time I see that someone has passed, there is a bit of me the feels jealous that my poor frail mother is still hanging on by a thread. I can't help thinking this is going to go on for months and months and months and it wears me out.

Found out last night that a close friends sister has just collapsed and passed away at 40, how can this be fair?

With dad's brain tumor we were giving a timespan and it pretty much happened how they said it would.

Some days I feel so heartless.

 

[marionq]

"I now exist again". Jaymor that is a cry from the heart.

Looking after my 82 year old husband and increasingly his 80 year old sister feels like a heavy burden to me. At 71 with good health and all my marbles ( well nearly all) I just don't want to be doing this. If a day centre place opened up I could just about recover a sense of self but in fact I rely on volunteers to give me a couple of hours for a swim.

Spas, manicures, shopping? Hah. I just want to talk sense to another normal human. I want to arrange a day out or a weekend or a couple of weeks holiday. When will this happen well that is the burden of dementia - there is no timescale.

 

[opaline]

I, too, feel jealous when I here someone has lost a parent, at work it seems to be every other week. I'm a very strong believer in euthanasia because, let's face it, if many of our loved ones were animals they would have been to the vet's long ago! Why do we let humans suffer (with many conditions, not just dementia) but animals are put out of their misery? x