Cancer care vs dementia care

[Chook]

Some two years ago I wrote the following post abut my feelings on the vexed subject of funding of dementia and cancer
Now two years on I find that my thoughts at that time have not changed .
Being personally involved with my wife's Alzheimer's and my continued membership of TP I have a very good knowledge of the traumatic experiences of so many people who write on this forum
I still feel for those who suffer in so many ways with the exhausting and never ending need to care for their loved ones- but, as I witnessed during my months in hospital and subsequent treatment at the Macmillan Unit so many of the cancer victims are young people , with many years of fruitful life in front of them if a cure can be found .
jimbo

Posted two years ago--------

" I find the topic of comparing the money spent on cancer or dementia very disturbing
It would be a wonderful world if we could afford to fund research and care for all the major diseases ,and we all have our own views on where the money will be best spent

My anxiety arises out of the comparisons made about the funding and care of cancer and dementia ( in all their forms )
.................Many may disagree with me , and as I read this back I am aware that it is a bit of a ramble
,but the writing of it has helped me to understand my own thoughts
I see no reason why I should have upset members and I hope I have not done so, I also have suffered my own traumas
In fact apart from helping me to understand myself ,I am sure that this post will be read by a few and ’lost’ in a couple of days
jimbo 111

I can see your point of view but my mum's dementia started when she was in her late 50s and she also had several children (me being one of them!). Because she's not in physical pain doesn't mean she hasn't be terrified, depressed or in danger.

I've had to deal with nearly all of mum's illness alone, with no support. Thinking about it, I'm not suggesting this is offered on the NHS but it's a shame something isn't available like Hospicecare. Why is my friend's suffering worse because her mum is dying of cancer? My mum's being slowly taken away from me for many years and it gets more painful by the day. Why is she entitled to reflexology, counselling( and some other stuff I can't remember) and I'm not?

I'm being completely selfish, it's just sometimes I feel very alone. My husband doesn't want to hear about it. Friends can't understand. I want a foot massage!!! lol.

I hope you're better now.

xx

 

[fizzie]

Chook do you have a local carers association? We have them in several counties near us and they do indeed offer things like foot massages, aromotherapy and coffee and cake - life lines they are indeed. Always someone to share with and chat to. I know it isn't the same as the care at the hospices but it definitely fills a gap

 

[Chook]

Chook do you have a local carers association? We have them in several counties near us and they do indeed offer things like foot massages, aromotherapy and coffee and cake - life lines they are indeed. Always someone to share with and chat to. I know it isn't the same as the care at the hospices but it definitely fills a gap

I'm not sure I'm actually classed as a carer anymore as mum's in a care home. I'd feel like a fraud, even though I still visit her thoughout the week.

 

[fizzie]

We have lots of carers who have family in care homes. In fact i'm hoping to start a new project shortly to get info out to care homes about our carers cafes. You absolutely ARE a carer - you play a vital caring role in your Mum's life - you monitor that she is ok and that she is in a suitable environment, you make sure she has everything she needs, you look after her spiritual and emotional well being and you are the person who holds her needs closest to your heart. You visit her, love her and cherish her and if that isn't a carer I don't know what is - so please find your local carers organisation and encourage any carers who have loved ones in care homes to go along too and fight the fight for carers - I know many people who are in their 80s and 90s visiting daily or several times a week and keeping their loved ones safe and happy - that's a carer and each one of them needs support.
let me know how it goes - fraud pfttttttttttttttttttttttttttttt certainly not!!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Chook]

We have lots of carers who have family in care homes. In fact i'm hoping to start a new project shortly to get info out to care homes about our carers cafes. You absolutely ARE a carer - you play a vital caring role in your Mum's life - you monitor that she is ok and that she is in a suitable environment, you make sure she has everything she needs, you look after her spiritual and emotional well being and you are the person who holds her needs closest to your heart. You visit her, love her and cherish her and if that isn't a carer I don't know what is - so please find your local carers organisation and encourage any carers who have loved ones in care homes to go along too and fight the fight for carers - I know many people who are in their 80s and 90s visiting daily or several times a week and keeping their loved ones safe and happy - that's a carer and each one of them needs support.
let me know how it goes - fraud pfttttttttttttttttttttttttttttt certainly not!!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxx

Awwww, thank you. I've been struggling alone for years xxx

 

[fizzie]

oh nooooooooooooooooo!!! Let me know if you can't find anything and i'll help you look x

 

[Chuggalug]

My Mum had excellent cancer care some years ago, and survived a very advanced illness, apparently. I don't know all the details as I wasn't allowed to be involved. Our family are very scattered and dysfunctional throughout. I also was left completely abandoned with my husband's dementia for years on end. It took a crisis to get him the care he needed. Two strokes wasn't enough. He had to break his hip as well. Then, he got care in a lovely home after being released from hospital.

I've never had the chance to go to any carers meetings. Wouldn't know where to start, even now, and I'm still fighting battles that should never have started. Care in the community? Don't get me started!

Glad this thread is here, but very saddened to know there are many others who have had to cope alone.

 

[Mrsbusy]

I read an article the other day that 70% of cancer sufferers were offered the option of ending their days in a hospice. Fantastic I thought.

Only something like 7% of dementia sufferers were offered any type of hospice care whatsoever. Saddening. I realise not all Dementia or Alzheimer patients would suit a hospice environment if they were loud etc but when they are reaching end of life they and cancer patients are both suffering from terminal illness. Very unfair system.

 

[fizzie]

My Mum had excellent cancer care some years ago, and survived a very advanced illness, apparently. I don't know all the details as I wasn't allowed to be involved. Our family are very scattered and dysfunctional throughout. I also was left completely abandoned with my husband's dementia for years on end. It took a crisis to get him the care he needed. Two strokes wasn't enough. He had to break his hip as well. Then, he got care in a lovely home after being released from hospital.

I've never had the chance to go to any carers meetings. Wouldn't know where to start, even now, and I'm still fighting battles that should never have started. Care in the community? Don't get me started!

Glad this thread is here, but very saddened to know there are many others who have had to cope alone.

Chuggalug I am so sad to hear this. We welcome carers who have loved ones in a home and they are just as much a part of our group as the carers who look after someone at home and we would miss them greatly if they didn't come to meetings. The same applies to former carers who bring a wealth of experience and knowledge to the group. I would be surprised if your local groups don't feel the same. Try googling carers café with your town and see what comes up.

 

[Spiro]

Only something like 7% of dementia sufferers were offered any type of hospice care whatsoever. Saddening. I realise not all Dementia or Alzheimer patients would suit a hospice environment if they were loud etc but when they are reaching end of life they and cancer patients are both suffering from terminal illness. Very unfair system.

I have discussed this with a hospice nurse; she highlighted the importance of equality of access to hospice end of life care for dementia patients.

It's so important to plan ahead. Speak to your local hospice/palliative care team and discuss options, before your loved one reaches that stage. Some homes have Gold Standard Framework accreditation for end of life care. http://www.goldstandardsframework.org.uk/patients-amp-carers

 

[Padraig]

jimbo 111,
I agree with you 100%, but then like you I've suffered with stomach cancer of which there's a 26.7% survival rate. The total stomach has been removed.Yes, I've been fortunate in that I was unaware I had cancer whilst I looked after my wife 24/7 on my own, my choice. I wasn't a carer, I was a husband. Also like you, I'm in my eighties (84) I've experienced much heartache along life's road.

Each of us are dealt a different hand in life. Some of us suffer painful experiences and learn to cope and become stronger. Personally I see nothing to gain from comparing one illness with another. We are each allotted a given time in this life, some will always have it tougher than others, but it makes them stronger and they are thankful and appreciate the love and blessings that come their way.

If I were to list the most painful event in my life, it would be the evening I kissed our fifteen year old daughter before leaving our house and going for a walk with my wife. On our return home, the phone rang. I was informed there had been an accident on the road. Our daughter had been killed! There were no goodbyes. At least I was concious my wife was dying with Alzheimer's and I treasured each moment we were blessed with, plus the time to say my long goodbye.

Sorry if this offends anyone, but I view life differently to most. Thank God we are all different.

 

[Oxy]

I feel that with all illnesses , you don't know what it is like until you experience it directly or care for someone with the condition. Certainly friends with loved ones battling cancer, young or old, find it heart rending. BUT the care provided is fantastic and therefore I feel strongly that ALL conditions should receive parity in care and support for all involved.
That requires knowledge out in the big wide world about true implications of various conditions. How often do celebrity quiz participants choose a dementia charity? Pretty rarely.

 

[stanleypj]

I agree that all diseases should have parity of treatment.

But this is one of those questions that invites the sweeping generalisation.

The truth is that some people with dementia die peacefully whilst some patients with cancer die in considerable pain. And vice versa.

An absolute difference between the two diseases, surely, is that some cancers are curable whilst no dementias are (though you do read of very rare conditions that mimic dementia and can be cured).

 

[Oxy]

So true

 

[chrisdee]

Xmas time and charity giving.

I think most of us know which we would chose if it was a case of cancer or dementia.
Cancer is usually 'known' and has some type of profile. These is no real profile for all the dementias, anything can happen and often does. Support is hard to find/non existent and I think the fear factor of both carer and caree is under-reported. My Mum in early stage once said 'this is dreadful, no ones knows what its like and I hope none of you get it'. I shall be by-passing all the cancer charities with impunity - I have said and continue to say to one and all 'Dementia is my charity, it is under-funded and I do not give to anything else, sorry'. There is no challenging this and I feel I am passing on useful information at the same time!

 

[Summerheather]

I think most of us know which we would chose if it was a case of cancer or dementia.
Cancer is usually 'known' and has some type of profile. These is no real profile for all the dementias, anything can happen and often does. Support is hard to find/non existent and I think the fear factor of both carer and caree is under-reported. My Mum in early stage once said 'this is dreadful, no ones knows what its like and I hope none of you get it'. I shall be by-passing all the cancer charities with impunity - I have said and continue to say to one and all 'Dementia is my charity, it is under-funded and I do not give to anything else, sorry'. There is no challenging this and I feel I am passing on useful information at the same time!

Completely true, and they are going to be curing people with cancer that will, in the future go onto develop dementia - that has no cure and has had very little funding .

 

[TinaT]

My husband suffered first from dementia and later from cancer. The problems for me was that as his cancer progressed and he was in pain, no one on the care home staff was qualified enough to see this. None of the staff were trained nurses.

He suffered for at least five months before he just gave up and stopped eating. Staff then allowed him to stay in bed where I often found him in a crazy, demented state and he had soiled himself. I was told that a doctor had seen him. I was devastated when the senior carer told me that the doctor had prescribed paracetamol as it was stronger than morphine!!

I was so angry that I phoned the doctor myself and was told that the doctor had not visited him, had not said what the senior carer had told me. The doctor then visited and prescribed morphine but the staff did not give it to him, telling me he had not complained of pain.

I finally snapped and phoned the hospice who then sent a MacMillan nurse out to assess him. The following day he was admitted to the Hospice where he received marvellous care for the three weeks before he died.

An experience which still tortures me in the middle of the night. Why did I let it go on so long?? We as carers must be ever vigilant and if we see things starting to go wrong in a care home we must fight to put it right. That is not how it should be but how it was for me.

xxTinaT

 

[fizzie]

Tina I am so sorry, you had such an horrendous experience and it must be so difficult for you. I understand, but please don't torture yourself. You really cared for him and no-one could have done more than you did. Hospices usually don't take people until the last 10 days or so and your only other option would have been to move him and from what you have said a move would have been so difficult without the help of very skilled professionals. You did the very best that you could in the circumstances and you got a fantastic result in the end for him.

you are so right when you say that we must complain and we must fight for what is right for our loved ones.

You fought for him all the way, you couldn't have done more xxx Thinking of you xx

 

[TinaT]

Bless you Fizzy for your kind comments. We carers do get so very weary, tired and confused that it is really hard to fight against what we know in our hearts is wrong and should not be happening.

xxTinaT

 

[DMac]

I can only comment from my limited experience.

My dad-in-law had an operation for bowel cancer 2 years ago, when he was 80. The care he received was second to none. He was prioritised for an operation. He had access to the very best facilities in a hospital less than 3 miles from his home. He was allocated a dedicated Macmillan nurse, who was absolutely fantastic. He had a reablement package to see him out of hospital and get him settled back at home. Back then, when I first started caring for him, I had social workers frequently asking me, was I OK, could I cope? The operation was deemed a success, and he is now cured of the cancer.

Roll forward 2 years, Dad-in-law very obviously has some form of dementia, which has clearly progressed in the last year or so. We don't yet have a diagnosis, but we do have a MMSE score of 13/20. I ask social services for a re-assessment of his needs. Is he self funding? they ask. Yes, I reply. He's doing very well, they tell me. He's lucky to have such a supportive family, they say. You want more care for him, you work it out yourself what he needs, is the hidden message. Of course, he'll have to pay for it. I understand that bit. But there is an evil part of me that thinks, why on earth did they spend all those resources on fixing the fan belt, only to let the carburettor conk out? (Sorry for the motoring puns.) Any ideas?