Alzhiemers and future generations

[Janedotgriff]

I wonder if anyone else feels scared. I have been watching my mum disappear to Alzheimer's for the past 8 years. She is now in the later stages and about to go into residential care. What a grim experience looking at homes is! When will people catch up to the 21st century and modernise and brighten up rooms, and hallways. Stop having chairs placed around the edge of the room with all occupants sitting in silence. It would not be hard to change this but yet home after home it was the same.This is a whole different subject!

My real question is, throughout my mums diagnosis and progression and now moving her to a home, I keep seeing myself and cant help but think this will be me in 10-maybe if I am lucky 20 years time. I see myself having no memory, struggling with dressing, eating and sleeping. Distressed and frustrated when I cant remember people or how to express how I feel.

What a depressing future. How do you try and stop imagining this? How do you remain with what you have in the present, after all any one of us could die tomorrow. I try to remain rationale but equally think about what I need to ensure my kids know now, how do I live my life knowing what may be around the corner?

Any words of wisdom would be most welcome.

Thank you

 

[Grannie G]

Hello @Janedotgriff

Both my parents had different types of dementia and if I had worried about dementia for myself I feel I would have wasted my life.

I`m now 77 years old and so far there are no signs.

Dementia can be a big shock and looking at care homes a frightening experience but our lives can be wasted by thoughts about the future which may never materialise.

The only day we are sure about is today. Anything can happen tomorrow. Try to make the most of today because the tomorrow you fear may never materialise.

 

[Lawson58]

Unfortunately, people end up in nursing homes for lots of reasons as well as any of the dementias so if you stop and think about all the possibilities you will end up in quite a state.

Both my parents died of heart disease, my mother at 45 and my father at the age of 72. As their children, we were all at high risk of developing heart disease too. I am the youngest of 5 and my oldest sibling is now 85 years old so we have all defied our genetic inheritance- and you might do that too.

Live your life well, enjoy whatever you do and stop worrying over something that might never happen.

 

[Bunpoots]

Both of my parents had dementia and I was dad’s carer until he passed away last year. My mum’s siblings also had dementia and diabetes type 2 but mum’s mum lived to be almost 95 sharp until the end which came when she fell downstairs. No-one else in dad’s family had dementia apart from his dad who had Parkinson’s and dad came from a large family.

It’s scary watching loved ones suffer from this horrible disease and I dreaded putting my dad in a carehome but, although it looked dire to me at first I soon came to realise that the staff were caring and compassionate and exactly what dad needed.

I’m in my 50s and, although I have had dark moments, I have to live the rest of my life believing that I’ll be one of the lucky ones or I won’t live it well.

 

[marionq]

I’m impressed with the positivity of all the responders. Given the angst in this forum you have all risen above it superbly and in my opinion correctly. My husband has Alzheimer’s and glaucoma just like his father and grandfather before him. None of his six brothers seems to have had the glaucoma but those who lived long enough got the Alzheimer’s. I hang on to the fact that his 83 old sister who is eccentric but has no Alzheimer’s symptoms is evidence that heredity is not inevitable and in this case may only affect males. As I have 3 daughters I certainly hope so.

 

[Kikki21]

I must admit that it is a scary thought as both my parents had dementia. My dad had Alzheimer’s but was meek & mild with it but also had the slow Non Hogkins Lymphoma which is what killed him. He lived to the age of 83.
My mum had all sorts of things wrong with her, had had numerous operations, plus had Vascular dementia & Alzheimers. She lived to over 90.
I’m definitely living for the here & now & in a way I am
grateful that I am being set free in a way to live my life better now that I am 50.

I do know what you mean about care homes though. The first one I visited looked like an institution not a care home & was absolutely grim. The next one was not so bad & the one we choose for my mum was bright, airy, had lovely painted & themed rooms & immediately felt better.

 

[Helly68]

I can really relate to aspects of this.

Having gone through the process of my mother having to go into a care home (though the home is very good), I can see myself, with several disabilities already, a partner but no children, having do go into a home myself in old age, and I find this cycle very depressing.

It is the complete powerlessness that gets me. However hard I work it is almost impossible to financially assure your future (as my parents are finding out) and it has really made me wonder what is the point.

Sorry that this sounds depressing, but it is genuinely what I feel and I have very little opportunity to talk to anyone about it.

It isn't the care homes per se, just the lack of support and guidance in what is a minefield, especially if you don't have other family members to advocate for you. My partners is great but doesn't understand as he hasn't had much involvement in what has happened to my mother.

 

[Witzend]

When I was relatively new to it all, and looking at care homes for my FiL, I remember wondering why on earth the chairs were mostly round the sides of the room. However several years (and another relative with dementia later) I came to think it was purely practical. Fewer obstacles for people who may often need walking frames or wheelchairs, easier to clean - and a lot of cleaning is often necessary with dementia - without having to move both chairs and residents, who may not be very mobile at all. and in any case (especially in later stages) would not want to be disturbed.
My mother's CH was purpose built for dementia - very well designed IMO, and had this arrangement, but was nevertheless bright, cheerful and homely.

 

[Witzend]

Might add, much as I dread dementia, what I dread even more is our daughters having to look after either me or my husband. Having seen and lived with so much dementia, both FiL and my mother, it's the last thing we would want for them.

Hence we have both added to our Health and Welfare powers of attorney, that in the case of dementia, or any other condition where we are unable both to a) care for ourselves, and b) speak (with full mential capacity) for ourselves, they have strict instructions to find us a reasonably nice care home - they already know never to bother with the most expensive, 'Stylish Homes and Gardens' type - cosy and homely will do fine, thanks.

 

[canary]

Can I admit on here that I have decided that if I develop cancer, then I will not seek treatment for it?

The idea of me developing dementia frightens me. Both my in-laws and my dad had Vascular dementia, my mum had Alzheimers and my OH is in cognitive decline (previously thought to have FTD, but now they dont know). My worst fear is to survive cancer and then go down with dementia. I would far rather die from the cancer.

 

[Bunpoots]

Slightly off topic here but I’ve just heard on the news that there’s new hope (yes I know - again!!) for a treatment for several diseases including Huntingdon’s and Alzheimer’s. I did wonder, a few weeks back, if Neighbours had a reason for giving one of their young characters Huntingdon’s disease and if the writers knew something...

I’m hoping to live and die dementia free but I’ll also live in hope of an eventual cure...or at least an effective treatment.

 

[Jaded'n'faded]

Can I admit on here that I have decided that if I develop cancer, then I will not seek treatment for it?

The idea of me developing dementia frightens me. Both my in-laws and my dad had Vascular dementia, my mum had Alzheimers and my OH is in cognitive decline (previously thought to have FTD, but now they dont know). My worst fear is to survive cancer and then go down with dementia. I would far rather die from the cancer.

I'm with you on this @canary

I have a dreadful hospital phobia (and dentists!) so anything involving tests/treatments is out of the question and there is no one I could ask to help/support/accompany me.

My mum has mixed dementia and her mum had it too, though undiagnosed back then. But I can remember my mum complaining that gran phoned her umpteen times at work every day, hoarded bizarre things and dried her knickers in the oven, because 'everyone does it'... My dad died fairly young from other things but I'm pretty sure he was going that way (in his late 60s).

To me, dementia is the worst possible outcome. I'm hoping - like most people I suppose - for a quick end and would happily choose (if I could!) a fatal heart attack or similar, even at an early age. I'm 59 now and really can't say I'm looking forward to the rest of my life much. (Sad but true.)

Nothing about old age seems good to me
After 85, the quality of life seems to drop drastically for most people, even those who are mentally sound. That isn't a life I would want. Your chances of developing dementia after 85 are extremely high and like @Witzend I wouldn't want my children burdened with my care. Unfortunately, in this society, old people are not valued much. No one cares what you think, your thoughts and opinions are not important and you are generally considered 'not much use' if you are impaired physically or mentally.

I realise this is a very pessimistic and 'glass half empty' view of life and I know many people will shout up and say 'It's not true! We love and value granny and always will!' But it's definitely not like that in my family.

On a more positive note, @Bunpoots , I saw the BBC piece on gene silencing too. My brother has protoporphyria so maybe it could help him... It could also - possibly - help those with early onset dementia. Not sure it could help very old dementia sufferers though, or if there would be any point. Given the frightening demographic that there will be twice as many people over 75 in 20 years than there are now, I don't honestly see how the system can cope. I've heard it takes 3/4 people to cope with one person with dementia so unless all our children go into the care business, who will look after us all?

Last time my doctor asked if I intended to give up smoking she tried to get me interested by saying people who give up live 10 years longer. The trouble is, you get those extra 10 years at the end! If I could have another 10 years in my twenties or thirties it might be different...

And on that cheerful note, more coffee, cigs and a cream cake for me...

 

[Duggies-girl]

I get that @canary I am 62 now and all I want to do now is out live dad and then have a few good years to do some travelling and I will be happy, I do not want to get like dad. His cancer has paled into insignificance compared to his dementia. We celebrated his 89th birthday last week but in truth I am dreading the thought of him reaching 90

If I was offered good health for another 10 years instead of taking my chances with old age then I would grab it.

 

[Elle3]

It does worry me. I certainly wouldn't want to be a burden on my family and I've already written a list of things I would want my family to do for me, if I could no longer make my own decisions. I wouldn't want them to struggle to look after me at home.

In some respects I think I would rather die quickly, like my mother did from a pulmonary embolism at the age of 66, than be like my MIL who had a stroke at 69. She is now 80 and has required 24/7 care ever since at home by my FIL, she is paralysed all down her left side. She was also diagnosed with breast cancer and now diagnosed with Vascular Dementia. She has no quality of life, sits in front of TV or asleep as FIL refuses to take her out or send her to a day centre. My FIL has had no life since either, he struggles sometimes to cope but won't allow anyone else to take care of her as he believes no-one else can do it better, he's also struggling with his own health issues now.

It has certainly made me question, if you don't have your health, is it worth living?

 

[Lawson58]

It does worry me. I certainly wouldn't want to be a burden on my family and I've already written a list of things I would want my family to do for me, if I could no longer make my own decisions. I wouldn't want them to struggle to look after me at home.

In some respects I think I would rather die quickly, like my mother did from a pulmonary embolism at the age of 66, than be like my MIL who had a stroke at 69. She is now 80 and has required 24/7 care ever since at home by my FIL, she is paralysed all down her left side. She was also diagnosed with breast cancer and now diagnosed with Vascular Dementia. She has no quality of life, sits in front of TV or asleep as FIL refuses to take her out or send her to a day centre. My FIL has had no life since either, he struggles sometimes to cope but won't allow anyone else to take care of her as he believes no-one else can do it better, he's also struggling with his own health issues now.

It has certainly made me question, if you don't have your health, is it worth living?

I am with you all the way, Elle. I am 75 years old, pretty fit and healthy but getting old scares the living daylights out of me. I watch other people my age struggling with some horrendous things like your mum and all I know is that scares me far more than the the thought of dying. Better than just writing a list for your family, why not do it properly? I don't know what they call it in the UK or what the legal implications are but I have completed an Advanced Care Directive about what I want to happen in the event I have a major health episode. It over rides a Power of Attorney for Health and Welfare and copies are held by my children, my GP and my local hospital and being a legal document, doctors cannot choose to ignore it. Assisted dying becomes legal in our state later in the year and I find that is a comfort for me too.

 

[marionq]

@Lawson58 i was taken aback at the news your state in Australia is to introduce assisted dying. That hasn't been reported here as far as I know. We have had a few attempts to change the laws in UK and in Scottish Parliament but to no avail.

It will happen some day but not yet it seems. I must look online for the discussions on the subject in Oz.

 

[Lawson58]

@Lawson58 i was taken aback at the news your state in Australia is to introduce assisted dying. That hasn't been reported here as far as I know. We have had a few attempts to change the laws in UK and in Scottish Parliament but to no avail.

It will happen some day but not yet it seems. I must look online for the discussions on the subject in Oz.

If I remember correctly it was passed by State Parliament last year and I think it's due to become legal later this year. The debates in Parliament were pretty emotional and of course there was opposition to it. There was also a strengthening of the laws regarding Advanced Care Directives which came in last month and I think there was a natural link between the two.

Years and years ago, the Northern Territory passed assisted dying laws but a certain element in federal government stopped that happening, being a territory and not having the autonomy of a state. I don't believe that federal government would succeed in doing that in Victoria this time. General opinion seems to be that people feel reassured by having the right to access assisted dying but most people probably wouldn't go down that road.

There was a gentleman, an extremely intelligent man, who at the age of 104 years and quite frail flew from Western Australia to Switzerland to end his life because at the time there was nothing available to him here. He was still lucid, articulate and intellectually high functioning but not actually ill.

 

[Jaded'n'faded]

If I remember correctly it was passed by State Parliament last year and I think it's due to become legal later this year. The debates in Parliament were pretty emotional and of course there was opposition to it. There was also a strengthening of the laws regarding Advanced Care Directives which came in last month and I think there was a natural link between the two.

Years and years ago, the Northern Territory passed assisted dying laws but a certain element in federal government stopped that happening, being a territory and not having the autonomy of a state. I don't believe that federal government would succeed in doing that in Victoria this time. General opinion seems to be that people feel reassured by having the right to access assisted dying but most people probably wouldn't go down that road.

There was a gentleman, an extremely intelligent man, who at the age of 104 years and quite frail flew from Western Australia to Switzerland to end his life because at the time there was nothing available to him here. He was still lucid, articulate and intellectually high functioning but not actually ill.

I too am in favour of assisted dying and with the numbers of 'old people' increasing globally every year, there is bound to be further discussion - and hopefully, changes in the law - in the future.

But there's always going to a problem with dementia sufferers (unless an Advance Directive is in place) because of loss of mental capacity. The main opposition to assisted dying seems to be a fear that old people will be coerced into signing something or made to feel they are a burden. Reading posts on TP about the appalling actions of certain relatives and scammers to appropriate the funds of PWD, this fear is not unjustified. So any change in the current laws on assisted dying may insist on the person concerned having full mental capacity, in which case we'd be no further forward.

I really think that for those of us who fear 'the worst' happening, the best we can do is to make sure we get that Advance Directive in place. Even if we can't ask for assisted dying at this point, it may be an option in the future and I will make provision for this when I do mine (if I can!)

But I'll say this: my mum has a Living Will (the old AD) but has no capacity, which means it is down to me, the evil daughter, to wave it at people and insist they follow it. It's a very hard thing to say to a medical professional, 'I don't want you to treat my mother'. Some are fine and completely understand, others have looked at me as though I am a murderer.

 

[Lawson58]

I too am in favour of assisted dying and with the numbers of 'old people' increasing globally every year, there is bound to be further discussion - and hopefully, changes in the law - in the future.

But there's always going to a problem with dementia sufferers (unless an Advance Directive is in place) because of loss of mental capacity. The main opposition to assisted dying seems to be a fear that old people will be coerced into signing something or made to feel they are a burden. Reading posts on TP about the appalling actions of certain relatives and scammers to appropriate the funds of PWD, this fear is not unjustified. So any change in the current laws on assisted dying may insist on the person concerned having full mental capacity, in which case we'd be no further forward.

I really think that for those of us who fear 'the worst' happening, the best we can do is to make sure we get that Advance Directive in place. Even if we can't ask for assisted dying at this point, it may be an option in the future and I will make provision for this when I do mine (if I can!)

But I'll say this: my mum has a Living Will (the old AD) but has no capacity, which means it is down to me, the evil daughter, to wave it at people and insist they follow it. It's a very hard thing to say to a medical professional, 'I don't want you to treat my mother'. Some are fine and completely understand, others have looked at me as though I am a murderer.

I absolutely agree that there will always be certain people who can only see a will dangling in front of their eyes when it comes to people with dementia and who would not hesitate to help an elderly relative on their way if there was the sniff of money in the air.

The assisted dying laws that are coming into being here totally exclude anyone with dementia and cannot be done even with the Advanced Care Directive in place.

I was very hesitant to organise the Care Directive initially but the process was very helpful and reassuring and I am so glad that I have done it. The Victorian state government has a website that takes you through establishing what your values are and how strongly you feel about certain situations then there is an online form that you can complete in your own time, revising it until you are happy with what it contains. I had two consultations with counsellors provided by our local hospital and had it all finalised, copies to my children who are my decision makers, my doctor and the hospital.

I think that as carers we are confronted by the terrible things that can happen to people as they age and I know that I feared that far more than dying. I also know that having this in place will relieve my children of the guilt of making life changing decisions on my behalf becauseI have already made my wishes perfectly clear and that one thing is the most important of all.

 

[Helly68]

This may sound wrong, but I am glad we had the chance to air these things on this thread. It helps me to know that others feel as I do