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Dementia has made me rethink my stance on Cancer

Summerheather

Registered User
Feb 22, 2015
160
And with Cancer they don't have to fight SS. It's not enough that you're caring for someone who is disappearing on you day by day and are left with a shell, you then have a process where you are given no support and any that you do get you have to fight like crazy to get. And that the Organisations that are suppose to help you - SS, try desperately not to, simply because of the cost.

I really resent the fact that Caring for my Mam isn't stressful enough, in the future I'm going to have to fight SS like crazy to get all the help I can.
 

fredsnail

Registered User
Dec 21, 2008
649
Grandad had dementia and my mum had cancer 2 years ago.

I can say that we've had very little support for either of them.

When I accompanied my Mum to her appointments I had to ask for information about different things - I'd found this out on the internet and from a work colleague who'd had cancer a couple of years earlier - important things like wigs for when you lose your hair from chemo.

We were fobbed off and dismissed and it took us 6 months from her first appointment for her GP (for which she had to wait 3 weeks) before she started treatment with an operation. Now although she is seen every 6 months, there are no scans to see if there is a recurrance even though she had a rare agressive type and was diagnosed as stage 3c due to the type and delay in surgery.

With Grandad we were fobbed off, no one wanted to give a diagnosis and there was no support other than what I've read on here. Our only initial input from SS was a photocopy of a list of care homes after he was assessed to be self funding.

It seems there is good and bad in all aspects of health care - you are either "lucky" or "unlucky", and if you can't read up on the illness you have or have someone to do it for you and have the guts to battle/speak up - you will get the bare minimum service that the services can get away with.
 

Bobtop

Registered User
Mar 19, 2015
11
I am now starting to understand what it really means to have a loved one with dementia, and most of my knowledge has come from this Forum. My Mum is only in the relatively early stages at the age of 87, however I dread the future for her and for me. It seems to me like it is a very slow and long death sentence. There is no other illness like it where people deteriorate over such a long period of time - I have heard of people living with it for over 10 years.

No one has choice over these matters, but I think that if anyone did they would surely choose a much quicker way to end their life - cancer, heart attack etc. Anything seems better than dementia.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,105
68
Dundee
I have heard of people living with it for over 10 years
My husband was diagnosed in October 2001 so we've been living with it for almost 14 years. It isn't always easy but we're still living relatively well with dementia.
 

Perdita

Registered User
Jun 22, 2009
219
Suffolk, Uk
Lindy - I can't do it. When I'm accused (as I was the other day) of doing something awful when I've spent hours and days and weeks and months trying my hardest to do things in his best interests to my own financial and physical and emotional detriment - well, I have to stand up for myself. I figure the dementia needs to be challenged when it's spewing paranoid and harmful untruths. And sometimes I manage to do that more calmly than others. Sometimes I do hear my voice rising. But you know what? It's okay. After all I didn't tip toe round him when he didn't have dementia. Why should I treat the dementia with more fearful respect than I did his own real self? And also I try to remember, I'm doing my best. That's all I can do.
Take care, Lindy. Remember you're not a saint but you are a bl**dy hero. :) x
Thank you so much for that post- I feel like printing it off and putting it on my mum's bedroom door so I'm reminded of it when I go in- :)

My mum is having a real bad day today and doesn't want me anywhere near her- she wants her mum- I want my mum too :(
 

AishaRebecca

Registered User
Feb 13, 2015
10
I totally understand how you feel.and it's horrible to say I ahve lost friends to cancer even at my age only 26. But living with my grandfather and watching him slowly die form the inside out kills me. I have often and horrible thought how if it was cancer atleast it is somewhat treatable.there are treatments. No treatment for dementia.once diagnosed the tablets they prescribe don't work as they diagnose it far to late.not saying that can't haplen with cancer.

I just total gt your point at least I'd still be able to talk to my Grandad if he has cancer.this disease has robbed us of any loving conversation and I miss his advice. :(
 

zeeeb

Registered User
I had a friend who's mum (in her 70's) died from a very quick cancer last year, diagnosed and passed within 2 months and whilst my friend was very distraught, I had to bite my tongue and listen whilst internally I was green with envy. 8 weeks of torture seems so much more palatable than the open ended amount of years I will have to endure. Obviously all cancers are not that quick. But I find myself often wishing for a quick heart attack or fatal stroke for my mum because I know if she doesn't get something like that happen to her, she'll be medicated and kept alive and maintained for decades.
 

Almeracat

Registered User
Mar 20, 2015
1
Colchester, Essex
You've given me hope!

I've been awake since 6am listening to my father in law Tom awake, noisily banging his drawers, doors etc, this is part of everyday life now as I guess it is for many carers, I start the day off in a grumpy mood and I'm angry with myself for feeling this way. Tom has always been a well mannered, debonair man and although we have only looked after him for 8 months it has probably been one of the worst times of my life as my own mother is now terminally ill with a brain tumour and breast cancer. I fully appreciate your comments and 'You've given me hope' that I am not alone in my thoughts. I want to go downstairs for a coffee now but can't because I know he will be downstairs and I will endure a conversation that I don't want to, I want my space, I want my coffee alone with good thoughts to start the day.
I'm angry with myself because I've always had a particular soft spot for the elderly and would go out of my way to help them but I've become a stranger to myself. Tom is now up dressed in all the dirty clothes I'd put aside to wash so another challenge with an 81 year old who could give a 13 year old hormonal teenager a run for his money, he will be humpy with me for suggesting a shower and clean clothes. My intention is to take him out for a Sunday roast so asking him to spruce himself up isn't the worst thing in the world.
 

Plum1108

Registered User
Nov 20, 2009
26
My sister and I once had a conversation on which we would rather have - cancer or dementia. We both said cancer as some are beatable whilst others have a "certain" time frame in which you can put your affairs in order and say your goodbyes. My mum has had dementia for nearly 10 years and I feel as though I have been grieving for most of that time. I would hate for my children to go through that.

Be you judge me, I realise that cancer is a horrible disease which does not differentiate between young and old and have lost several relatives to it but I fear dementia much more....

Plum x
 

Summerheather

Registered User
Feb 22, 2015
160
My sister and I once had a conversation on which we would rather have - cancer or dementia. We both said cancer as some are beatable whilst others have a "certain" time frame in which you can put your affairs in order and say your goodbyes. My mum has had dementia for nearly 10 years and I feel as though I have been grieving for most of that time. I would hate for my children to go through that.

Be you judge me, I realise that cancer is a horrible disease which does not differentiate between young and old and have lost several relatives to it but I fear dementia much more....

Plum x
I think that's one of the hardest things with dementia, the constant grieving as the person that you cared for just diminishes day by day.
 

Padraig

Registered User
Dec 10, 2009
1,039
Hereford
I truly don't understand this subject matter. Why chose cancer to compare it with Dementia? There are many other illnesses and causes of deaths to relatives and friends that cause deep pain and suffering. Is it any wonder that so many people that suffer with Dementia are in denial? One has only to read of all hate and hurt caused to the carer at having to care for a relative. The parent they're looking after is not the same person, they have become strangers etc..
The saying: 'Better to have loved and lost, than that not to have loved at all', is so very true. When I was informed that my Father was dying and he wished to see me, I had to turn down his request as I was waiting for my family to join me at a new posting in the forces. I had never known the man. I briefly met him for the first time, after I tracked him down when I was seventeen. In my case it was a case of 'Never to have loved at all'. There was bitterness involved.

Personally, I can't write about a Mum or Dad with Dementia or for that matter any family member until I started my own family. When my wife was diagnosed with Alzheimer's I viewed it in a different light than most people. It was one more of life's challenges to be confronted, and like most things in my life I managed in my own way.
The total lack of love or nurture in my first sixteen years gave me an appreciation of the meaning of love. The power that flowed from that saw me through the Alzheimer's years.
After my wife's passing cancer visited my family, firstly my son, with bowel cancer, then it way my turn with stomach cancer. There are good days and bad days. Do I let it get me down? No way, it's something new to learn about. What have I learned? It's still possible to go running most days even without a stomach when your coming up to 84. "Always look on the bright side of life".
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Padraig, I hope you are having a good day, relatively pain free at least.

You query the subject matter on this thread; well the subject was bought up by summerheather as she was concerned about her feelings. The responses are posted because other posters wanted to reassure her that she was not alone in her feelings and she was not the horrible person that she thought she was. Empathy is a great comforter in stressful times and, even though I have not responded so far, I have read the thread and I hope summerheather and others have felt comforted by the vast majority of posts.

We can't ignore how people feel; we encourage people to 'voice' their own feelings and if that involves stating that someone would rather have cancer than Dementia-well that's a genuine feeling. I understand that your family has sorely suffered from both illnesses-and that is truly horrible; I also understand that you have a fantastic 'coping' mechanism and a strong will to fully face what life has thrown at you, and for that you have my admiration. However, many Tp'ers need to offload here for the sake of their own emotional health and well being, and if sometimes that means writing about dark thoughts -well, I feel we have to respect and accept that.

Lyn T
 

Padraig

Registered User
Dec 10, 2009
1,039
Hereford
Lyn, Thank you for your kind response. It has given me a glance into a separate world to mine. Odd as it may seem to many I learned to cope with the sight of death of other children at a very young age and was not affected by it.

There advantages in both worlds no doubt. I've had no option but to cope on my own and along the way I've never made a friend. I acknowledge many of my views are unconventional. Some people however have found them helpful. One example is when our daughter said Mum is gone my response: "She will never be gone, look in the mirror. She has carried you for nine months. Shared her blood, air food and her genes. You are every part of her and she lives on in you. It's a never ending circle."
The Psychologist that monitored my wife's progress once remarked:
"You approach caring is like that of a surgeon, not allowing emotions to interfere."

That may have been why I was able to carry on in my own way. What I've learned along the way I'm only too happy to share by offering a free download of my story.
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Well Padraig where would we be if we were all the same? Nowhere-that's where.:( I like unconventional views:)-my late OH was 'different' in as much as he 'turned the other cheek' when his good nature was taken advantage of. Some may see that as a weakness-to me it was his strength.

I'm sorry but I'm going to raise a query with what you have written!!! You say you have never made a friend-surely your wife was your friend-you were definitely hers; that much is evident. Yes! you were her protector, and later her Carer, but your marriage always appeared to be so precious to you, so along with love, maybe there was friendship as well?

From a personal point of view my relationship with Pete was built on a deep friendship-a good foundation I always think. Love came later. It grew!. In times of trouble it helps if a couple actually like each other. A friend of mine who was having a rant about her Husband once said to me 'I love him, but I don't like him'. That to me was not a good grounding for a marriage-just my opinion.

Padraig, you are a unique human being-for that we are all grateful.

Take care

Lyn T
 

SarahL

Registered User
Dec 1, 2012
229
I think that's one of the hardest things with dementia, the constant grieving as the person that you cared for just diminishes day by day.
Too true, the loss is overwhelmingly sad... and the guilt associated with not understanding the disease and all its complexities that leaves the carer absolutely exhausted and wishing the worst. I too have had your thoughts summerheather. I am forever changed. I wish I could meet some of the people on here who really understand. :(
 

Summerheather

Registered User
Feb 22, 2015
160
Too true, the loss is overwhelmingly sad... and the guilt associated with not understanding the disease and all its complexities that leaves the carer absolutely exhausted and wishing the worst. I too have had your thoughts summerheather. I am forever changed. I wish I could meet some of the people on here who really understand. :(

Dealing with Alzheimer's has changed me forever. I too wish we could meet some of the people here. I sometimes feel that it's an on going experience of grieving, sometimes everyday - the grieving process has steps and dealing with Alzheimer's it feels that I'm still on the same step again and again. Cancer doesn't hold it's fears for me now - at least there's a start, a middle and an end - Alzheimer's is just torturous - no wonder carers get burnted out, constant grief will burn anyone out.
 

RedLou

Registered User
Jul 30, 2014
1,162
I think it's also knowing you cannot offer any comfort. With cancer, even in the last stages, I was able to offer my mother comfort. With dementia, I'm just an opportunity for my father to practise passive-aggression. It's putting huge strain on my marriage. All of us are suffering a kind of mental torture. Want it to end. That's the bald truth. :(
 

Kazza72

Registered User
Feb 10, 2015
202
West London
I want an end to it also. I lost my dad to cancer, multiple myeloma to be precise, when when the disease started to really progress to death took around 16 months, dad suffered, broken bones that would never heal and massive confusion but there was an end even of it was slower than some of the other cancers. Mum has been diagnosed for 5 years, she will outlive me that I'm sure of. You mention Alzheimer's to friends and they soon begin to disappear from your life, but cancer and people seem to be there for you. Feeling sorry for myself I know...but I'm on this journey alone I could cope with it better if the poop finger painting and incontinence wasn't there


Sent from my iPhone using Talking Point
 

Padraig

Registered User
Dec 10, 2009
1,039
Hereford
Lyn, Yes my wife was a friend and so much more, I would gladly have traded my life for hers. She deserved so much better. She was my inspiration and my salvation. After all these years I can still remember the evening in 1953 I first met her at a dance in County Durham. She was dancing with another girl and a fellow asked me if I'd help him meet the girl she was dancing with. Though I never met the girl again I remember her name: Joan Lyons. As for the girl that ended up as my wife, I felt too embarrassed not knowing how to dance. From that day on I could not stay away from that part of the UK. I was stationed in Lincolnshire and hitch-hiked my way up north every weekend I had off. We were married in 1955, all I had to offer was a dream and that dream I fulfilled to the full.
Of all the subjects I taught myself Alzheimer's I can say without doubt was the most difficult challenge to master. I never sought advice or went on the internet to discover how others managed. There was no time for that. Being a husband to a spouse with Alzheimer's and caring on your own 24/7 year on year is all time consuming. In addition there were the other tasks of daily living.

I've mentioned before, being confronted with Alzheimer's is not unlike being presented with a large plain box full of jigsaw puzzles pieces. Slowly and with a degree of patience I managed to complete the puzzle to my satisfaction.

There were times I attempted to force the incorrect pieces together, but never gave up trying. As a result the reason I'm on this site now is to offer anyone who wishes a free download of my story: 'Alzheimer's Care My Way'. It may not answer all the questions, but I'm sure most people will have encountered so many of the same problems as I.
 

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