Fiona Phillips - Dementia: Why putting my parents in a home will haunt me forever

[MrsTerryN]

I think 'one brush' attitude is wrong. Some people with dementia are violent, aggressive both verbally and physically.
They may be larger than their carer and so physically not possible to care for them.
I could not have kept mum safe even with me living with her.
So for me end of story. A nursing home granted not perfect means her medications are done she is fed, warm, on average clean.
They do exercises and outings and have so much assistance for people with dementia.
Do I feel guilty I couldn't keep her at home? Yep, do I sometimes wonder if she could come home? Yep sure do.
I have a list and I read it to remind me why she cannot live at home.


Sent from my SM-T310 using Talking Point mobile app

 

[LYN T]

Where is that fence I wish to sit on?

I agree with Gringo that all the riches in the world won't stop the inevitable but I also agree with Halojones that MT (and her family) didn't have the same pressures that most of us face. I bet she never had to wait months for an OT assessment, or live alone frightened while carers were set up.

I wish our PM would just step into the real world and see what REALLY happens in a dementia household-living in the Ritz is hardly typical.

Take care

Lyn T

 

[PeggySmith]

Carol Thatcher published her book in 2008. Immediately several rich and important people went public denouncing her and insisting that Mrs Thatcher didn't have dementia. In 2014 the prime minister has publicly acknowledged that Mrs Thatcher did, indeed die from dementia. It's a small step in the right direction.

 

[Padraig]

When the going gets tough

Why is it that these high profile people always get the publicity? With all their money I would have thought they could have afforded to keep their loved one at home and provided the best possible care that money could buy.
Some like to mouth the expression 'When you have seen one person with Dementia.....'
Well I say 'when you see one carer you see one carer and little know nothing about them'. Some people are made tough due to circumstances in life beyond their control. The 'disadvantages' I encountered in early life taught me the true meaning of love. As a result I chose to keep my wife at home to care for her in my own way on my own. I bought the wheelchair, commode etc., and rejected so called experts advice help.
It seem to me that when someone from the bottom of the heap makes a success of their life, society resents tends and tends to ignore them. Change in society takes time and so it will with the way we see Dementia.
As for the religious influence, here I am sifting through mountains of official documents by them pertaining to my early incarceration from the age of two to 16 in what were child labour camps. Just as well I never sought the reasoning behind a stolen childhood till now. It's the stuff of fiction so many lies and blackmail were used to keep me and a seven year old sister I never knew existed locked up. We were located 70 miles apart! Talk about 'suffer the little children'.

 

[halojones]

It is so true, what you say about the carers Padraig,and about our lifes experiences, they can make or break us..And this is my point, how can the people in Government understand what we have to live with as carers and dementia patients, when their experiences are one of privilege and financial security...?Change would be a lot sooner if the powers that be had a realistic grip on what our lives are really like, ...The well off, high profile people are not us real ,at the frontline,grass roots ,reality...They will only know this if we tell them, which I will to my MP...!,.,.......One of my friends also had an upbringing similar to yours, and what can I say ? I hope those days are over now.,and you have some peace in your life..Take Care x

 

[marsaday]

I read that article yesterday and, while Fiona's regret is real and we all live with it to some extent, I refuse to be haunted by guilt. It's there alright but life must go on. I did the best I could given my own very personal and difficult set of circumstances. What was Fiona to do with her job and young children-give up her life for an unforeseen number of years?

As the article says the decision is more stressful than divorce. So not one anyone would take lightly if there was any other choice. Someone should tell the pope that. If his parent had required care I wonder would he have given up his route to the top to take care of them? Perhaps he had a willing sibling (female of course) at home who had no life of her own who was expected to devote herself to caring. Lucky for those of us who do have someone like that in our families.

The world has changed-there is no going back and his words are unhelpful and only cause more guilt and heartache. If he has no direct experience with dementia then he should keep quiet.

Anyway, what on earth does a pope know about the stresses of family life?

 

[Chemmy]

I think it's unfair and indeed, unkind, of Fiona Philips to start pontificating about the 'what ifs' after the event. Talk about setting people on a guilt trip. I'm disappointed in her - she really should have known better. Chances are, even with the benefit of hindsight, when push came to shove, she'd make exactly the same decisions again, because they were the right ones at the time for her young family.

Some of you may recall that my MIL went into a CH in May, mainly because she needed 24/7 supervision because of falls. She has early signs of VaD but is actually fairly compos mentis most of the time so is able to express how she feels about it.

She is loving it. She's not the 'new girl' any more and my SIL is gobsmacked that her mother is trying all sorts of activities (yoga painting) She would have snarled "don't be ridiculous" if you'd suggested that to her this time last year.

She is no longer lonely, malnourished, grubby, scared or living in a dirty house. Those were all her choices , btw, not neglect by the family.

So we should stop viewing CHs as the worst possible option or a cop out and instead see them as a means of providing a quality of life that many elderly living in so-called 'independence' could only dream of.

 

[jeany123]

Chemmy you certainly put things in perspective, thank you xx

 

[Padraig]

I love that statement; 'You'll never know how strong you are till it's the only option you have'.
It was my only option in life. Now as I reflect on my life I've come to the conclusion that; into each life comes consignments of manure. Some large, some small. How we handle them determines our quality of life. Manure put to best use, can bring forth a rich crop of your choice. Leave your consignments laying around, or push it away only makes life stink all round. I've had many consignments through the years and put them to good use and been rewarded with the sweet smell of beautiful roses.
Sadly those that have had little or no manure to enrich their lives have been the losers.
I've stayed in the finest hotels around the world, but the one place that captured my heart was a small two up two down home, with just one cold water tap and a outside toilet.
Nothing compares with the love and welcome I received in that home of my wife, with its five kids in the mining village of West Auckland, Co Durham. Wonderful values wonderful memories!

 

[jimbo 111]

This thread makes me feel very sad
Like most members of TP I have been through the trauma of caring for a loved one with AD, and I know that so many of you still suffer
I am a regular reader , and because of my own experiences I can feel the hurt , sadness and desperation in so many posts .
My wife died nearly five years ago ,so my pain is softened by the passing of time

On the one hand we have posts praising celebrities and well known
personalities for the publicity their comments give to raising the awareness of the public and on the other hand we criticise them because so many times we feel their experiences through money or status are nowhere near the same as most of us have to put up with
In other words they are damned if they do ,and are damned if they don’t
I am sure that all of us have ,or have had ,differing experiences. We sympathise unreservedly with those who post of their problems on TP
We do not judge them by the degree of their experience
We know instinctively that anyone who has seen their loved ones disappear in the nightmare of AD is an experience we share , be they celebrities or just ordinary carers like ourselves
I reserve my judgement on those celebrities politicians, etc ,but I do know that they can do more to raise the awareness of the public in one article ,than we as individuals (and even the Alzheimer’s Society ) can do in a thousand letters to the press or parliament
jimbo111

 

[BeckyJan]

Well said Jimbo - I share your thoughts

 

[marsaday]

Yes well said Jimbo. My gripe was with the Pope and not Fiona.