Dementia has made me rethink my stance on Cancer

[Lilac Blossom]

I would echo Padraig's question - Why pick on cancer?

I have returned to this thread a number of times as it has troubled me to read so much in the vein that cancer would be a more favourable "option" than AD/Dementia.

My husband was diagnosed CLL (leukaemia) in 1999. Over the years he has had many complications requiring difficult treatments. Some of those treatments had devastating side effects with the result that he became housebound (literally housebound), bones in spine crumbled, my tall husband lost height, became bent, spine twisted, mobility very poor, constant pain and all the time I have been caring for him singlehanded. This caring role continued even when in 2006 I was diagnosed breast cancer - had operations, chemo, etc and somehow carried on. We have not had/do not have any cancer related support.

I have come across a quote: "there are more people living with cancer than dying of cancer". People do die unfortunately, but living with cancer is not easy.

I can assure you that friends and relatives do not necessarily rally round being supportive in relation to cancer - if anyone has such support they are fortunate indeed whatever they are dealing with.

In addition to the above, Vascular dementia continues to rob me of more and more of what made my husband the person he used to be

Padraig - It's good that you have those rich sweet memories of your dear wife but so sorry about your teenage daughter, what a tragedy and what a loss xx

 

[Kazza72]

I lost my dad to cancer, multiple myeloma to be precise, this was a wicked relatively slow cancer (I know they're all wicked). The last 15 months of his life was riddled with pain and confusion...in the end his poor body was broken, he couldn't wear clothes as moving him around only caused fractured that would never mend.

Mum was actually envious of the attention me and my brother gave to my dad (parents divorced when I was 8)....but I had moral support from friends. Now mum is being destroyed by Alzheimer's, no one is there, it's just me, friends rarely bother and when they do it's half hearted and my brother has not contacted us for 3 years, I cannot begin to describe how much I hate him for it, him and his wife and grasping kids. I'm still relatively young but my life has been robbed from me with no end in sight, with dad I was relieved when he went as he was at peace and no longer in pain. Mum has no quality of life, must be frightened at times when the confusion is at it's peak, she can't go out on her own, spends most of her days on her own at home, double incontinence, is destroying the flat with human waste, bloody and poopy hand prints all over the place...it's no way to live, SS are finally taking notice of my concerns over her needs...so I understand the OPs post. I'm tired and I just need to close my eyes


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[love.dad.but..]

It's a difficult one, having looked after dad recently whilst in hospital it is harrowing to try to help a dementia patient who is extremely frightened of any procedure even having temperature taken because he has lost that basic understanding of someone trying to help whereas with a different illness but with mental capacity, he would be able to make sense of it and possibly make choices from treatment options. In reality I suppose no-one would want any illness and no one illness is worse or better than others, each presents its' unique problems and everyone is different in how the illness presents whether dementia, MS, cancer, etc etc. Even within the same illness 2 people can be affected in very different ways and with different outcomes. If I was diagnosed with something I would hope it would be an illness giving me a chance of a cure through treatment or surgery, unlike dad with dementia, husband with CLL, friend with MS, friend who recently died from lung cancer, mum had the right idea although terribly traumatic for us because we found her but got to 80 by one day and then catastrophic stroke - instant - but in truth ..there but for the grace of God go I....but equally I can understand the thoughts within the thread.

 

[RedLou]

I'm still relatively young but my life has been robbed from me with no end in sight, with dad I was relieved when he went as he was at peace and no longer in pain. Mum has no quality of life, must be frightened at times when the confusion is at it's peak, she can't go out on her own, spends most of her days on her own at home, double incontinence, is destroying the flat with human waste, bloody and poopy hand prints all over the place...it's no way to live, SS are finally taking notice of my concerns over her needs...so I understand the OPs post. I'm tired and I just need to close my eyes


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Bless you. It sounds as if you need a break, some respite, at least.

 

[Pear trees]

I empathise with all who have posted under this topic. I have been given a sort of timeline by a clairvoyant of 5 more years for my 88 year old mother with worsening dementia. I often think that a sudden illness or fall would be traumatic but would be better in the long run.

 

[Ginnykk5]

Agree

Oh my God, I feel just the same.
I saw my sister die of a brain tumor, it took 2 1/2 years. It was awful, i loved her so much, she made 54 years. The strain on the family was extreme but we new there was a limit even if it wasnt set, that helped hugely even if at the time you didnt realise .

Dad is nearly 94 he has dementia hes so physically fit it will go on and on. Hes kept clean worm and fed, he has no worry or cares in the world. He remembers very little.

I on the other hand am going insain.
I am 53 , I hurt, im tierd, i am unkempt, doey faced, greecy hair, arthritis is kicking in in my hands and hips.
I feel the last of my active life is being sucked out, when im finally free i will be old and too worn out to enjoy life.

I would rather see dad with cancer than live with this hideous diseases which distroys the people around them as much as the victim.
Worst still theres a very good chance i will get it myself, oh joy of joys. Dear God I hope I die before i get it.

 

[Kerri123]

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

I'm not sure I'm doing this correctly - this is my first reply on this forum. I just want to say you are NOT horrible. I can't begin to imagine what you are going through right now. My auntie has D & she is getting worse - we are slowly losing her & I don't know if I can face that. Please don't feel bad about yourself, you are just human like the rest of us.

Kerri

 

[Kazza72]

I think the majority on here are feeling the same...the life is being sucked out of us all and there is no telling how long it will go on for. My mum has COPD and is on warfarin for a previous dvt...she's never been more physically fit. Me on the other hand, gaining weight because of my comfort eating which is putting a strain on my joints, lower back pain due to tense glutes, nerve damage cause constant pain in the upper torso. If my mum had a physical illness rather than a mental one, people would be happy to help or visit, certain relatives would still swing by to take advantage of her generous nature and fleece her for all they can....with my dad, I knew there was an end in site. Mum could live to 100 at this rate...20 more years! I'll be dead before then


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[queenquackers]

I remember sobbing while watching The Fault In Our Stars last summer - not for the reason everyone else was. (Spoiler alert) It was the bit where Hazel (the main character, a teenage girl with terminal cancer) goes to the Anne Frank house in Amsterdam and struggles to climb to the top of the house. I started crying because although my mum was never very keen on travelling abroad, I know the Netherlands was one place she would have really loved to explore (she always loved tulips and the art of Johannes Vermeer, so it was only natural she would want to go there). Now though she gets quite disoriented enough in Britain, so anywhere where English is not the first language of most people would really send her into a downward spiral, and even if we were to take her there anyway, she can't manage stairs without handrails and crowded places panic her as well, so the Anne Frank house (not to mention countless other historically important landmarks) are out of the question. I have known people who have died from cancer, and while I certainly wouldn't wish that fate on anyone else, if I could make a deal with some divine entity and take all of that pain myself in exchange for getting my mum back, I would do it without question.

 

[stu100]

I have last loved ones to canser it is mutch quicker with canser but my nan has vascular Dementia I live with her it's the worst thing in the world I don't say that lightly.

 

[Padraig]

Ironnic

In the last few days I received a letter from solicitors in Ireland, to ask if I have any objections to a proposed person by my sister, to be granted Power of Attorney on her behalf. The sister is one of two, who I tracked down and met for the first time when I was 17. As I recall at the time I felt like an unwelcome intruder, someone from her past, best forgotten. Over the decades I kept in touch very occasionally. She was never forthcoming with any information about herself or the 'family'.

Only in recent years when diagnosed with cancer did I decider to research the whole family background. From the results of my research I'm left in shock and am still attempting to put the pieces of the jigsaw of an incredible story together.
The younger of the two sisters was sentenced to nine years State custody when she was seven! At the same court hearing in Dublin I was given a 14 year sentence at the age of two! There was an attempt to prosecute the older sister who was raised by her Grandmother. The charge against both the younger girl and I amounted to begging. The Social Worker a Mrs Clarke, requested that the older girl also be 'put away'. What Reason: she was attending a Protestant School! Her request was denied.

Up to the age of 17 I believed i was nobodies child. Copies of the official records reveal that the Mother lied in court in order to have us 'put away'. At a subsequent court hearing she admitted under cross-questing, that she had lied at our hearing. No action was taken against her. Neither of us were released. The younger sister served her time near her home in Dublin, while I was shipped some of 70+ miles away. It was consider to be in my best interest that all knowledge and family contact be denied.

I've never had a home in Ireland and just wanted to forget about the place.
What I find ironic, like Dementia there was a lot of shame and stigma attached to having been in the Industrial Schools and the Magdalene laundries. One dare not speak.

Now, the one remaining live sister at the age of 90 has been placed in a Nursing Home suffering with Dementia! There was I, hoping to learn more from her about the 'family' and the Grandparents who raised her.

Some of the letters by people in authority leave me not knowing whether to laugh or cry. There have been countless benefits in not been formally educated and being put to work at the age of ten. I've lived my life 'my way'. All I had to offer the young girl I married, who started work at 14 in a clothing factory was a dream. That dream I more than fulfilled.
It often said on here: "We are all different". Thank God for that, for like everything I learned in life, I was privileged to take the Alzheimer's journey and learn the most challenging lesson of all, but the most rewarding.

 

[Summerheather]

I have cried every day for the past month, I can think of nothing positive about Alzheimer's.

I love my Mum, she deserved so much more than the shell she is now.

My Nan had lung cancer, she knew who we were and who she was until the day she died.

Alzheimer's is a horrible disease.

 

[Kazza72]

I have cried every day for the past month, I can think of nothing positive about Alzheimer's.

I love my Mum, she deserved so much more than the shell she is now.

My Nan had lung cancer, she knew who we were and who she was until the day she died.

Alzheimer's is a horrible disease.

I totally agree. It destroys whole families, not just the sufferer. I fear the stress will kill me. I don't cope well with my role as a carer and I admit I am not happy to do it....but there's no one else and until lately she was not ready for a home...but now it's time. I just have to find the right one for her, I need to be close enough to randomly drop by, as I'm scared of care home abuse...I'm hoping it's rare but I still need to protect her as much as I can. I've cried every day since this has all started...maybe it's good to let it out through tears....


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[stu100]

I also care for my nan it's getting really hard now just remember u r doing ur best and doing a grate job kazza

 

[Kazza72]

Thanks stu...back at ya!


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[flossielime]

I went to work today, stressed out as usual. My colleagues asked after my dad, as they do everyday since his traffic accident. i updated them the latest. Their response was 'why are you here - you cant do a job like this (teacher) when you are so stressed'. it was suggested I get 'signed off'.

But I explained that this illness has no end date,so I would be off all the time if i was signed off every time '**** hit the fan' .

My younger colleague responded ' bloody hell, when my dad died (liver cancer) with two weeks notice it was bad enough, I never thought about it before but your going through what I did it that 2 weeks every week forever.'

Wanted to high five her for the moment of clarity about my situation.

 

[Kazza72]

Your younger colleague got it spot on....

Like you, I am shattered every Day I turn up for work...but without it I think I would go crazy. My heart goes out to those out there who get no escape and are dealing with it 24/7. I would love a good nights sleep though, one with no crazy dreams or constant waking up tossing and turning, just one night of sound uninterrupted sleep would be wonderful....


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[Kevinl]

Your younger colleague got it spot on....

Like you, I am shattered every Day I turn up for work...but without it I think I would go crazy. My heart goes out to those out there who get no escape and are dealing with it 24/7. I would love a good nights sleep though, one with no crazy dreams or constant waking up tossing and turning, just one night of sound uninterrupted sleep would be wonderful....

Try sharing a bed with someone with a COPD cough and who repeats in her sleep the same phrase over and over and over...last nights was "I don't want to be here" she was sound asleep but kept saying it over again, I remember seeing the clock at 5.45 then I just passed out.
I work from home so I didn't do much work today (I couldn't) 3 lots of washing and a trip to Morrisons but by Monday I have to have the new designs for some juice drinks cartons done, however, those done I'll get down to our barge and try and fit the new kitchen cabinets doors I've made and we both need some showers and some shopping and I really need to chop some more wood for the fire on the boat and order some repeat prescriptions (but I can do that on line) and fit a motion sensitive light I bought because my wife seem to be losing her night vision a bit (must look up if that's normal). Will I do it all? I'll tell you Monday but I just try to look forward.
I certainly couldn't do it if I was stuck to a 9-5 o'clock I admit that make me one of the lucky (still having to work) people on here.
K

 

[Kazza72]

My line manager has said any time I need to work from home just to let them know and that it's fine, I tried it twice and never again.not sure hoe you do it kevin, but hats off to you. When we all actually itemise what we do in an average week it's quite a flaming lot, no wonder we are all worn out lol. I do have the day off today but need to do something for work but I hope to finish that before mum gets up. Her getting up times vary so much, sometimes it's 10, other days it's a lot later, more like 2. Not sure if she sleeps or just trashes her room quietly! I have to call her in the end to feed her...she's never been so physically strong by the way and ample energy. Pre-diagnosis she was always nodding off in her chair, that never ever happens now


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[Quilty]

That god for tp. Its good to know i am not alone and that someone, somewhere actually understands. My dad died of lung cancer at 62 and i thought nothing in my life could be as bad as that. Now i thank god he did not live to get ad. I have watched my mother slide into confusion over the last 7 years. I have no life exceot for work which i cling to for my sanity. The previous poster whose workmate said its 2 weeks of cancer hell lived over and over again is right. I had a deep and unforgettable conversation with my dad the day before he died. My mum died many years ago and im just taking care of her body until it catches up. No smilrs or laughs, no happy memories or shared past. Just daily grind. To all of you out there i wish you the strength to fight on and a helping hand from someone.