Dementia has made me rethink my stance on Cancer

[milly01]

You are not on your own

This is my first time on this forum even though I have been reading for several months. I lost my adoptive father 25 years ago with cancer when I was pregnant and last year lost my birth mother through secondary lung cancer at 67. We had found each other 20 years ago and were very close. My adoptive mother is now 93 and I have looked after her in her own home for the last 15 years and I do work full time. I have had to battle SS to have her assessed with answers such as "We do not provide a hand holding service". Eventually through insider knowledge I contact the the memory service clinic and they encouraged me to push her GP to refer her. She went through the usual blood test and CT scan and was diagnosed with alzhemers and vascular dementia, at the time I thought all my blessings had come at once. How little did I to know or was prepared for.Prior to her diagnosis, there were several "financial irregularities", she was being targeted by companies telling her she had won money and they just needed £25.00 as an admin fee to release the winnings, her so called friends from church had a key (which I did not know at the time). They were asking her for money, ornaments have gone missing etc. She was sending cheques to utilities unsigned and for incorrect amounts, cheques were bouncing, the bank were transferring from her savings into her current account, all unknown to me at the time. One of the most concerning episodes being when I was in Spain and her phone was cut off.Finally she was admitted to hospital with a very nasty tummy incident which resulted in her carpet and settee etc being condemned. The outcome was that SS finally had to assess her and supply domiciliary care with four calls a day.In December 2013 her consumer set on fire at 10.30 pm I was called out, the result was that I stayed with her in a hotel overnight and she went into respite. From then on she has accused me, my daughter, husband and brother of all sorts and now refuses to see us. Her very naive and inexperienced advocate has supported her. She is now living totally abandoned, partially blind, suffering from constant bouts of cellulites. Through her advocate she has overturned our LPA, no money has left her bank account since Feb 2014. What the hell has she been living on, I still receive all her statements, social services have totally abandoned her. I still receive her utility bills and she makes no outgoing calls to anyone, not even her friends. I attended with the police last May and she refused to see me telling them that we were trying to "kick her out of the house, put her in a home and sell the property", frankly the property is more of a liability than an asset as it is so run down. I am living a night mare. Sorry to ramble on, but to answer your question, yes I do not want to live for ever and if my end of life care was as good as my birth mothers, I to would rather go with cancer than dementia.

Chin up x

 

[milly01]

Sorry just need to add that mum was assessed by the lead on dementia who is an expert court witness, also the lead nurse (CPN) who both found her not to have capacity to make a decision on her long term care. This was overturned by a new social SW after her financial assessment when they realised the property was now held in tenancy in common between mum, me and my brother, which would have meant mum would have to be fully funded. She was sent home last year with no family support as she refuses to accept us back into her life. I must point out that she was informed Feb 2014 by SS that she would not be returning home. She is so at risk there is a definite safeguarding issue, but I have been so vilified by SS that I dare not raise my head above the parapet. Would you believe that SS instructed a GP from her practice to assess her who has only received 4 hours on line training in dementia (I found this out from a freedom of information request to the practice).

Honestly I hope for a heart attack, so no I would never want my daughter to go through any of this.

 

[stu100]

Milly01 what a joke thay just don't want to know o hope u r ok

 

[Summerheather]

Milly01 what a joke thay just don't want to know o hope u r ok

I find most people have a really deluded idea of dementia, they think it's a little old lady that's a bit forgetful.

 

[Kazza72]

I find most people have a really deluded idea of dementia, they think it's a little old lady that's a bit forgetful.

You're spot on summerheather...to be honest that's what I thought before Alzheimer's barged it's way into mine and mums lives. The destructive behaviour, hygiene issues, wandering, anger, hallucinations and that's just the tip of the iceberg...I wish it were just about being forgetful


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[Summerheather]

You're spot on summerheather...to be honest that's what I thought before Alzheimer's barged it's way into mine and mums lives. The destructive behaviour, hygiene issues, wandering, anger, hallucinations and that's just the tip of the iceberg...I wish it were just about being forgetful


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Alzheimer's and the effects on everyone it touches has been hidden far too long in the UK as far as I'm concerned, it allows the government to treat both those that have it and those that have to live with the effects as ****

 

[Kazza72]

Alzheimer's and the effects on everyone it touches has been hidden far too long in the UK as far as I'm concerned, it allows the government to treat both those that have it and those that have to live with the effects as ****

I hear ya. I doubt I will vote this election...the two main parties have done nothing but let us down. Ones as bad as the other, so if I don't vote I can't whinge about them. God almighty I hate my life right now. They forget it's not just the sufferer who is affected, the main carer has it the worst, really breathless tonight, feels like I'm in worse physical shape than mother at the mo lol


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[Chaucer 1931]

I think if the various dementia organisations,that apparently are there to support people and carers,actually showed some real life middle to end stage patients( mind you they probably wouldn't be able to consent to being filmed) covered in their own filth,smearing filth around the home,all over themselves not least pouring milk into the toaster and similar stuff,then they might actually shock and educate the powers that be and general public who are only familiar with the staged glamour shots of sweet little forgetful elderly people,having a cup of tea holding a serene looking carers hand in a pristine looking home.
It's about time people were told the horrors of dementia,and I'm sick of being patronised and being offered false respite-never had any,and as my mum won't agree to going into respite,I'm stuck.if I leave her to it,I will have a death probably on my conscience and no other family to support. Dementia sucks big time.


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[Adcat]

I've just read today's posts. It's pants big time. I'm off to bed. Hoping for a better day tomorrow x

 

[Flake]

I must be a horrible person too. My mum has not got a 'proper' diagnosis as yet, but what is happening to her is horrible to see. She has become unkempt, not the clean proud woman she used to be, her home lacks the finishing touches of a once house proud woman. Her clothes are only changed once a week if that. Her short term memory is dire and the repetative questions are unending. Today was particularly bad. Her door key had gone missing, that was the start, it was that football man that had it, then I had it. I found her spare key and my mum turned argumentative. It was my fault for moving it. The whole conversation was one big muddle. She knows my name but not who I am. She does not remember her Husband, my Dad which I find really hard, and the time scale has me as her sister, or cousin. I am expected to know all of the long past family history and I cannot answer the questions. So yes I am a horrible person sometimes too. I do not know for how long I can continue my full time job, run my house for my family, have some life for me, and visit my Mum every day to make sure she has her meds, and to see her not as my Mum but as a person that looks like her and has the occasional recognition. And it is going to get worse. Thanks for listening/reading, Im afraid Im having a little rant.

 

[Kevinl]

Rant away Flake, listen to the hollow promises of the politicians, try and change the system but ultimately the problem is too big for society to pay for and so we'll be left alone to cope because any other solution is unaffordable.
We now saddle our children with thousands of pounds of debt to get a degree, make it virtually impossible to get a mortgage so they have to rent, move the pension date further and further away, there are no winners.
Irrespective of who wins the next election the steamroller of service cuts will roll on, we are a country with an aging population of baby boomers and it's become unaffordable, "crisis intervention only" is the phrase bandied about by those who make the policies and they're not the same as the people you elect.
Traditionally the young, working and healthy paid in and the old, poor and sick took out. Simply there aren't enough of them.
K

 

[MReader]

I can see this from both sides of the argument - which is worse, dementia or cancer.

Well, my husband has both - mixed dementia (now late stage) from a stroke 5 years ago & terminal prostate cancer now in his bones & brain

I can only say that because of the dementia, he is spared the knowledge of what the cancer is doing to his body - he thinks he has a cold!!!

The downside is that nobody knows if it is the cancer or the dementia which is slowly killing him, so all treatment is guess work.

Every time he has a downturn, the Hospice nurses, district nurses & doctors all scratch their heads. The only thing we are all agreed upon is that he should have no more invasive treatment but be kept safe & comfortable at home until I can no longer cope.

It is a living death for both of us - I really don't know how I cope from hour to hour, although as we all say, you just do because, although he is no longer my lovely husband, I still love him.

 

[milly01]

If the world could see

Mum used to lived in filth, all her work tops were covered in ants which were nesting in her carpet, I am sure that I have been bitten sitting on her settee. She had a very old dog who I blamed for the smell of urine, until I realised that every time I visited there there was a bucket in the kitchen with bleached water, she was using it as a toilet, as she could not make the stairs to the bath room quick enough, all her underwear went missing along with her trousers. I came home from holiday and literally the kitchen sink was blocked and the dishes on the work tops reached to under the wall cupboards. I just broke down and had to call my husband who dismantled the u tube under the sink and we put a bucket under there so I could wash everything and clean the kitchen, which took all day Saturday and Sunday. SS did not give a monkeys. She has burned pans dry as she refused to use the kettle and boiled water in them for tea which she slopped everywhere, literally your feet stuck to the carpets. She has set the microwave on fire, her tummy upsets were horrendous partially due to her under cooking food and the old dog treading his poo into the house and sitting on the settee with her. The smoke alarm has been set off on several occasions and the gas left on unlit on the hob.

If only this could be publicised as the true face of alzhemers and dementia. Guess what SS did not give a monkeys until she was admitted to hospital with explosive diverticulitis and they had to do something. Her whole living room had to be condemned, carpets, settee you name it. I receive her phone bill on line and monitor the care calls, some are only 9 minutes and that is if they attend.

Social Services at their best

 

[Summerheather]

All Social Services care about is the money, end off. The care and dignity of the person with AD counts for nothing. Basically they would rather that you don't darken their doors with your needs. Social Care in this country is a disgrace.

 

[Kevinl]

Every time he has a downturn, the Hospice nurses, district nurses & doctors all scratch their heads.

I think that's the difference you have 3 levels of care, if it was only AZ you'd be lucky to have any more than one, hospice and district nurses and a doctor too all at the same time. It is good when the system works well enough to put all these part in to play what would happen then? I'm just happy for that the system is working for you even thought it's not doing a lot but at least it's trying and hasn't deserted you as it does for so many on here.
K

 

[Lindy50]

This is the problem for us carers, because if you grit your teeth and put up with it you're psychologically becoming a victim or a martyr, which is bad for your own self-image. You are, essentially, allowing yourself to be bullied. It doesn't matter if you tell yourself 'It's the dementia.' The fact is that by 'colluding' with the dementia [keeping your lip buttoned] you are diminishing yourself. That's why it's so difficult for us, so draining. We have to try to remain ourselves - be upbeat and resourceful and dynamic in order to get things done for the demented one - and yet the things that are said by that person are casting us in a different mould.

RedLou, I have never seen a post which more clearly reflected how I feel. I do feel diminished and drained, every day....yet have to carry on being positive and resourceful ...as we all do.

Wish I could put your post under the nose of someone in power, you absolutely encapsulate the effect on a carer of not having enough self respect.

Thank you xx

 

[RedLou]

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

 

[MReader]

Thanks Kevinl

Hi Kevinl

I feel really 'lucky' that my husband has 2 terminal illnesses rather than just 1 :rolleyes

I would give the world for him to have just 1 condition with all its consequential problems, rather than have a lot of support & medical help because he has 2, with the added luck of the real possibility of him having another stroke at any time- how lucky are we

 

[lexy]

deleted

 

[Rubylou]

So having read and posted on this thread, one thing that comes across is that none of us 'want' our loved ones or any others to suffer. Its not that we 'want' them to have cancer its more that we dont want them to suffer the awful things that dementia of all types brings. Every type brings missery for the people caring for the sufferer and that they are watching them slowly dissapear often over many years. Some cancers have cures and yes some dont. Most are often awful, painfull, life changing etc but sometimes have a return to normal way of life. Dementia never goes away or gets better, it feels to me like a very long journey on a one way path that no one knows the duration or how bumpy it will be.
Dont look too far ahead,live for the day. Do everything you need to do go places you want to go etc etc . How many people have told me that is unreal....if only it was that easy