How has dementia impacted you?

SophieD

Administrator
Staff member
Mar 21, 2018
2,119
London
Our media team are looking for people to share their positive and negative stories to help change the narrative surrounding life with dementia.

Has being diagnosed with dementia led you to develop a new hobby? Have you fulfilled an ambition since your diagnosis? Have you or has someone you know with dementia started to get more involved with your local community after diagnosis?

People often describe feeling isolated or left out after being diagnosed with dementia. Have you or has someone you know with dementia found it harder to interact with loved ones or feel a part of society after a dementia diagnosis?

Let us know your thoughts below :)
 

Cazzita

Registered User
May 12, 2018
547
I feel changed by my experience looking after my mum (bvFTD): Emotionally drained and saddened by this horrible disease; financially drained as so much has had to be changed and she is almost under the 24k savings now which is worrying me; angry that carers allowance is a measly 65 pounds per week - unbelievable! Tired beyond belief, unable to work etc etc. Cleaning up incontinence (both) issues etc is so demeaning for us both. Worried about the future as she is declining and so sad for her that she has changed so much. Sorry, I don't see any positives at all - why I am on antidepressants I suppose. The powers that be should be ashamed that dementia care is just not good enough in this country, that everything from gaining a diagnosis to treatment(?) to sorting out care is an absolute minefield and that's without the effect it has on the carer. Soul destroying. I don't feel like I will ever be the same again
Sorry if my post offends anyone, but that's how I am feeling. Hope it is different for others.
 

lovey11

Registered User
Apr 30, 2017
14
I feel changed by my experience looking after my mum (bvFTD): Emotionally drained and saddened by this horrible disease; financially drained as so much has had to be changed and she is almost under the 24k savings now which is worrying me; angry that carers allowance is a measly 65 pounds per week - unbelievable! Tired beyond belief, unable to work etc etc. Cleaning up incontinence (both) issues etc is so demeaning for us both. Worried about the future as she is declining and so sad for her that she has changed so much. Sorry, I don't see any positives at all - why I am on antidepressants I suppose. The powers that be should be ashamed that dementia care is just not good enough in this country, that everything from gaining a diagnosis to treatment(?) to sorting out care is an absolute minefield and that's without the effect it has on the carer. Soul destroying. I don't feel like I will ever be the same again
Sorry if my post offends anyone, but that's how I am feeling. Hope it is different for others.
I feel changed by my experience looking after my mum (bvFTD): Emotionally drained and saddened by this horrible disease; financially drained as so much has had to be changed and she is almost under the 24k savings now which is worrying me; angry that carers allowance is a measly 65 pounds per week - unbelievable! Tired beyond belief, unable to work etc etc. Cleaning up incontinence (both) issues etc is so demeaning for us both. Worried about the future as she is declining and so sad for her that she has changed so much. Sorry, I don't see any positives at all - why I am on antidepressants I suppose. The powers that be should be ashamed that dementia care is just not good enough in this country, that everything from gaining a diagnosis to treatment(?) to sorting out care is an absolute minefield and that's without the effect it has on the carer. Soul destroying. I don't feel like I will ever be the same again
Sorry if my post offends anyone, but that's how I am feeling. Hope it is different for others.
I too can see no positives in this journey we are on. My husband was diagnosed 2yrs ago with lvPPA and it took almost 2yrs to get that far. We are both working age and have had no savings left have sold our house and moved to be nearer family and are now living on benefits. The whole process has been a nightmare to deal with. I to am on antidepressants and know things cannot get better for him or me. Whoever said living well with dementia hasn't asked the person caring for someone. Life is lonely and isolating for both of us.
 

Countryboy

Registered User
Mar 17, 2005
1,458
Cornwall
Hi SophieD having been a member on Alzheimer’s Society Talking Point since March 2005 so fairly well known by the Society I probably covered most of my dementia experiences however I will respond to a few

However you question: positive and negative stories

well the positivein November this year it will be 20 years from my First diagnoses of Alzheimer’s and 17 years I diagnosed with Frontal-temporal-dementia , I was fortunate to be assigned a Occupational Therapist who because I was 57 at the time was determined to keep me in employment and active and I continued working until the age 65.

The negative was to achieve this it wasn’t always easy with the help and support from my Occupational Therapist and of course my family & close friends it was an ongoing struggle probably fought more battles than Field Marshal Montgomery :mad:.

ambition: my ambition was to live and run my life as I wanted not allow bureaucrats who never saw or talked to me to decide my destiny probably it’s what kept my brain active I wouldn’t allow then to grind me down;)

involved with your local community after diagnosis: well I wasa member of the Cornwall Isles Scilly Leader Ship Group funded and run by the Alzheimer’s Society for approximately 4 years and took part in a few NHS Studies

Personally other than the difficult the stigma of dementia brings and the battles I was forced to fight my Dementia it hasn’t really bothered me unfortunately over past month I have been diagnosed with another health problem :( :( I may not be so fortunate to fight but No point worrying :):)
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,837
69
Dundee
Hi @SophieD

I hesitated as to whether I should post here or not as I’m no longer an active carer. For what it’s worth I decided to jot down a few notes. I have the luxury (if it can be called that) of looking back on my experiences from a distance. If I had written my thoughts when I was in the middle of caring they would probably not be as I see things now.

My husband was diagnosed with Alzheimers in October 2001 and he died in July 2016. My mother had vascular dementia and she lived with us for the last 5 years of her life. She died in August 2011, at home with us, just short of her 94th birthday. I was still working full time as a headteacher when she died.

I was very lucky that we had access to a good support system in my area of Scotland and I was able to have the support of excellent carers. I couldn’t have survived without this support.

NEGATIVES
  • 15 years of knowing what the future held for us and that there would be no good outcome. This made it hard to be positive. When I thought I got to grips with one problem another was always another waiting for me.
  • Losing the times I hoped my husband and I would have together. We did have many good times but they were so different to what we had talked about in our early years of marriage.
  • Even with support it was so hard to be working in a demanding job and also living with 2 people who had dementia. I know that my temper was short and my patience was in short supply a lot of the time. This has left me with sadness and regret and I wish I could have been different.
  • Of course the biggest impact and negative has been losing my husband. I miss him every day and can’t believe it’s almost 3 years I’ve been without him.

POSITIVES
I’m not sure positives is the right word but I’m grateful for these things -
  • Finding Talking Point. I joined in 2003 and after a short time I left. I couldn't face reading about other peoples' experiences as I knew that these would be what we had in front of us. I think I was absent from TP for a few years but in desperation came back and it has been the best support I could have had.
  • We were lucky to be involved with some great activities together - in particular our choir for people with dementia and their carers. I have remained a member and am now a volunteer with the choir.
  • The connections I have made throughout the time dementia has been in my life - friendships developed with groups of people who have also lost their husband/partner/parent to dementia and know exactly what it’s like. Some of these friendships came about through Talking Point and some through involvement with our dementia related activities here. The person who started the choir became my husband’s carer and our good friend. He and his partner saw me through my loss and are still there for me.
  • I look back now and can’t believe some of the things I did when I was caring. I never thought I would be able to deal with things like incontinence but I did. I suppose whether I wanted to or not I found the strength I needed.
I think I've rambled a bit and may be looking back through rose coloured spectacles. I know life wasn't easy but I find I have started to block out or at least blur the bad memories. I have photos of my husband everywhere and now when I look at them I think of good things and not the dementia memories. I haven't spoken much about my mum here as that was almost 12 years ago now. She was much harder to cope with than my husband. I think this might have been more that I found it harder to be my mum's carer than my husband's.

I appreciate that everyone's experience is different and some have it much harder than I did.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,811
Bristol
Negatives are that we can no longer go out on day trips like we used to. We don't listen to music as much together as we used to either. Sharing time together is so much harder, on C who has vascular dementia more than on me I think.
As she gets older and arthritis and other problems restrict her movement it is hard to say what impact aging and those problems have compared to dementia. So, I suppose the music memories café once a month is a positive as it allows her and I to enjoy music together and have a trip out for one day.
For me I had to give up mountaineering club when we started weekend antique fairs, and there are so many other walking events I can't manage to get to. I have made a friend at the one walking group do go to, and it was a caring role which we have in common so there is a positive there to cling to. She has introduced a friend who now comes and there's another friend I have made partly due to day centre being on the right day.
 

lis66

Registered User
Aug 7, 2015
277
Totally agree with cattiza, I have changed as a person ,looking after my mother for six years with AD feel down and cry a lot for me and for her this is the cruelest disease with absolutely no support the only positive is when she still smiles at me .
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,960
south-east London
The positives for us mostly came within the first few years after diagnosis.

My late husband, who died last year, was diagnosed at 58 (he survived for 6 years). He had been made redundant four years previously and had not been able to get back into full-time work, and any part time work he did secure was short-lived.

His self-esteem was at an all time low and he regularly referred to himself as 'stupid'. The nasty way he was dealt with at the job centre did nothing to make him feel he was anything other than lazy - despite the fact that, other than the four years of redundancy with occasional temp work, he had worked almost solidly for 36 years. In fact, it was so stressful for him that he only signed on at the job centre for the first year of redundancy (to activate our mortgage protection insurance) and after that he just tried to find work under his own steam, including voluntary work, without the constant pressure of trying to prove his sincerity or availability to the job centre.

So for us, the diagnosis was something of a shock - but also a revelation which helped us have a more positive outlook. He could stop thinking of himself as stupid and instead know that he was ill and that there was a valid reason why he could no longer do the kind of work he'd always done.

With the diagnosis, he was empowered to stop his struggle to find paid work and, instead of being labelled 'unemployed' he stepped into the lovely world of early-retirement at the age of 58, thanks to his private pension. He took this path as it was preferable to applying for ESA, which would have kept him in stressful contact with the job centre and continued assessments. In short, the hostile system scared him from claiming or trying to find out what he was entitled to.

Never an idle man, and always happy to socialise and meet new people, he wanted to use his new 'free time' in a constructive and worthwhile manner. He continued his voluntary work at a charity shop one or two mornings per week. By the time the shop closed 18 months later he had already joined a Men in Sheds group which restored donated furniture to sell and raise funds for the local hospice, so he continued with that. He wasn't able to use the machinery there but could do basic manual work such as sanding down, painting or varnishing.

For a while he also joined the local Community Champion volunteer scheme. The volunteers were provided with iPhones by the Council so that they could take pictures of eyesores they might come across in their day to day lives (fly-tipping, animal fouling etc) and then send them to the Council with the location automatically tracked by GPS. He left the scheme within a year because he lost his ability to use the phone - but he continued in his own way by sending in reports via the website after I helped him write down the locations when we were out and about for walks.

These activities all gave him a sense of self-worth and value within the community.

Always a good bowler, he had some good friends who helped him participate in the game for as long as he could. Former work colleagues invited us to their get-togethers (until travel by public transport became too much) and his friends also helped me get him to some cricket games until he was unable to enjoy the atmosphere any longer.

When overseas travel became impossible, we enjoyed day trips through a local coach company. We also joined dementia cafes and clubs where we developed a wider circle of friends to socialise with - and through which suitable outings were organised.

There was also a social group for people with dementia and their carers run through the borough's libraries. He loved being at these because a library felt like a second home to him. We also managed a few theatre trips to a small local amateur theatre. Not deliberately dementia friendly, but being small and friendly in general, it was much less overwhelming than going to a bigger, professional venue.

When we were unable to join our local Singing for the Brain group we were lucky enough to find a 'fun choir' for people with dementia and their carers in a nearby town. That was something neither of us had ever envisaged doing! It wasn't a new hobby as such, but definitely a new experience :)

Overall, we did well and our lives were definitely enriched by the lovely, caring people we would not otherwise have met. However, one of the negatives was that the onus was always on me to do the research and find the opportunities available to us. If I had relied on the professionals, or had I not been savvy with the internet, we would have had a very different and much more isolated life.

As for how it impacted on my/our lives, I don't want to give the impression that it was all rosy.

Being a couple/family affected by young-onset dementia, we had a mortgage to pay off and my work hours were reducing year by year as my husband needed my help at home more and more (thank goodness I had a very flexible and understanding employer on my side from day one, many don't). We were also helping support a child through university. The mental health of both our children was impacted.

Looking back there were undoubtedly some extremely traumatic times as the dementia progressed. Very challenging behaviour and extreme paranoia made several appearances in the latter two years. It was hard to deal with as my husband was naturally a kind, peaceful and quiet man and at 6ft 2ins, he was fondly known as 'the gentle giant'.

On the negative side, it seems the whole care and support system waits until you hit a crisis point before stepping in to do something.

For instance, before my husband's first crisis (fourth year after diagnosis) I spent two weeks warning professionals that he needed help quickly. I am still aghast that when my husband was in the throes of paranoia, believing I was about to kill him, I was asked to 'put him in the car and drive him to the surgery' rather than be offered a house call! There was no comprehension of the seriousness of the situation until it escalated into an actual physical attack driven by my poor husband's increasing fears that his life was in danger.

It was the same two years later when his second crisis occurred. We were 'on the radar' for nearly two weeks as things got more and more out of control, but nothing was triggered until a physical attack happened, though I am pleased to say that the care, understanding and support that followed this time around was a huge improvement to the first time.

I would not want to go back to those days of torment, but despite all that happened I can honestly say the experience from start to finish made us stronger both as a couple, and as a family.

I also feel blessed that, during those six years, I came to know a side of my husband from the days before I came into his life, a glimpse of experiences which helped shape the man I eventually fell in love with. I often referred to it as 'seeing the child within' and it strengthened my love and understanding of him.
 

lilypat

Registered User
Mar 1, 2019
211
Yorkshire
Hi SophieD having been a member on Alzheimer’s Society Talking Point since March 2005 so fairly well known by the Society I probably covered most of my dementia experiences however I will respond to a few

However you question: positive and negative stories

well the positivein November this year it will be 20 years from my First diagnoses of Alzheimer’s and 17 years I diagnosed with Frontal-temporal-dementia , I was fortunate to be assigned a Occupational Therapist who because I was 57 at the time was determined to keep me in employment and active and I continued working until the age 65.

The negative was to achieve this it wasn’t always easy with the help and support from my Occupational Therapist and of course my family & close friends it was an ongoing struggle probably fought more battles than Field Marshal Montgomery :mad:.

ambition: my ambition was to live and run my life as I wanted not allow bureaucrats who never saw or talked to me to decide my destiny probably it’s what kept my brain active I wouldn’t allow then to grind me down;)

involved with your local community after diagnosis: well I wasa member of the Cornwall Isles Scilly Leader Ship Group funded and run by the Alzheimer’s Society for approximately 4 years and took part in a few NHS Studies

Personally other than the difficult the stigma of dementia brings and the battles I was forced to fight my Dementia it hasn’t really bothered me unfortunately over past month I have been diagnosed with another health problem :( :( I may not be so fortunate to fight but No point worrying :):)
Hi I read your post with a smile .my OH was diagnosed in November 2018 with FTD he turns 71 today .well after reading what you wrote I feel energised that he will be around for many years yet .even though he sees no one medical wise apart from doctor goes to no clubs and at all times does not seem as if he is bothered by this dreadful disease if fact he is less stressed when we live quietly. We live in a small village and he has lived here most of his life and feels it's all he needs
 

marionq

Registered User
Apr 24, 2013
6,075
Scotland
Other people have been my positives overwhelmingly.

Alzheimers Scotland staff who went above and beyond to be supportive in the early years.

NHS staff - CPNs and psychiatrist at Elderpark Clinic, Govan. Link worker for the first year after diagnosis - so helpful.

NHS staff on the few admissions John has had to hospital. Sympathetic and efficient including phoning me at home to give updates and his doctor in Feb giving me her private number.

His dentist - a lovely, lively young woman who has an instinctive ability to handle him.

The people I met at Alzheimers groups whether clients or staff - all good people trying their best in difficult circumstances. Without them I would have been so isolated once John's behaviours made it difficult to do simple things like eat in a restaurant or go on a holiday.

People on buses or in shops have all been friendly, sympathetic and helpful. I always think it is because we are in Glasgow but I'm sure other places and people want to do the same.

I have two negatives concerning people over seven years which is not bad. One was a stand up row with an older woman at the swimming pool who blocked the cubicles next to John to "book" It for her friends so that I could not get in to help him. I often see her when I am pushing him in his wheelchair and she has to look away in shame. The other was much more serious and has had a lasting effect.

A distant relative of John's abused his kindness before and after diagnosis and scammed and wheedled a significant amount of money out of him before I was able to put a stop to it. When John could no longer go out alone and was beyond his clutches he started pestering me on the telephone ( he would never have been allowed in my house at any time). Eventually he left four messages on the same night on my answerphone and I had enough evidence of his threats to go to the police and they gave him a warning and it ended. I still look carefully before opening my door.

I do think about all the other carers who have health concerns of their own or money worries or battles with difficult relatives. This is such a difficult illness to deal with that we really need supportive networks.
 

Countryboy

Registered User
Mar 17, 2005
1,458
Cornwall
Hi I read your post with a smile .my OH was diagnosed in November 2018 with FTD he turns 71 today .well after reading what you wrote I feel energised that he will be around for many years yet .even though he sees no one medical wise apart from doctor goes to no clubs and at all times does not seem as if he is bothered by this dreadful disease if fact he is less stressed when we live quietly. We live in a small village and he has lived here most of his life and feels it's all he needs
Hi lilypat sorry to hear you OH has FTD but its good news he accepts that he has FTD and not bothered by it, like your OH I lived in the same small village all my life so I understand where he coming from there, although with all the new build that going on our village increasing every year “not so great”

I note he is 71 so I assume he is retired now that make things a little easer I was just a few months short of 57 when diagnosed so needed to carry on working for a further 8 years obviously to keep a wage and increase my pension I would have continued working but at the time when you reached 65 you had to retire I think that has change now I always try to be Positive about most things although there are so many Negatives around dementias its difficult and at times that’s when the conflicts start and I’m a sore looser :mad: the old saying fight to the death,:) when I see or read about others with dementia I feel blessed that my brain is so functional my Consultant did say a couple of years back I unique, hopefully your OH is also, remember were only here once so my advice to you both keep positive:):) don’t read or think about the doom & gloom :rolleyes:o_O and you will both be fine and have may happy years ahead, remember were only here once
 

lilypat

Registered User
Mar 1, 2019
211
Yorkshire
Hi lilypat sorry to hear you OH has FTD but its good news he accepts that he has FTD and not bothered by it, like your OH I lived in the same small village all my life so I understand where he coming from there, although with all the new build that going on our village increasing every year “not so great”

I note he is 71 so I assume he is retired now that make things a little easer I was just a few months short of 57 when diagnosed so needed to carry on working for a further 8 years obviously to keep a wage and increase my pension I would have continued working but at the time when you reached 65 you had to retire I think that has change now I always try to be Positive about most things although there are so many Negatives around dementias its difficult and at times that’s when the conflicts start and I’m a sore looser :mad: the old saying fight to the death,:) when I see or read about others with dementia I feel blessed that my brain is so functional my Consultant did say a couple of years back I unique, hopefully your OH is also, remember were only here once so my advice to you both keep positive:):) don’t read or think about the doom & gloom :rolleyes:o_O and you will both be fine and have may happy years ahead, remember were only here once
:) thanks
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,384
Nottinghamshire
My positives have been the support and friendship I’ve found here on TP.

Another positive is that I have gained the love and respect of a group of cousins and an aunt by caring for and helping to care for various relatives with dementia over the last 12 years.

My dad died only recently so I’m still very down about the whole experience so I do have more negatives than positives.

One massive negative, and I’m not sure if I’m allowed to tell this tale so please remove it if inappropriate, happened in 2008 while my mum was suffering from severe stroke induced dementia - I have a friend who dips in and out of my life (currently in) - who’s mother died as a result of her father’s dementia. At the time we weren’t in touch so I read about the incident in the local paper. He father was arrested and eventually sectioned when it was realised he had lost capacity. He was a lovely peaceful man. Reading that news report we couldn’t fathom what had happened it seemed unbelievable...

Looking back now, after having talked about the run up to the incident to my friend it was apparent that her dad did have dementia but her mum had no idea why he was acting that way and their GP had been worse than useless. More knowledge and support is urgently needed and I find it very worrying when I read of people struggling with aggression and violence as I know how tragic the consequences can be.

Had I not discovered TP my journey with my dad would have been far more difficult and I’d have probably given up two or three years ago and left him to reach a crisis. At times I really didn’t know how to deal with the complete lack of logic and bizarre behaviour but TP usually gave me a way to move forward.

I wish my dad would have joined in with some of the care groups that were on offer. I enjoyed them and would probably have made some friends. But dad was stubborn and immovable. At times I wished I could pick him up and treat him like the toddler he was behaving like and make him do what needed to be done, especially when the incontinence started, at others I wanted to walk away.

I think the main gripe for me is lack of support for the carer and lack of knowledge by the medical profession. Also lack of support and understanding from the “invisibles” who are now waiting for me to divide my dad’s estate...
 

SophieD

Administrator
Staff member
Mar 21, 2018
2,119
London
I just wanted to say a huge thank you to everyone who has shared their stories, experiences, and comments so far. The deadline for this piece of work is Tuesday April 30th so if you would like to get involved, make sure you post on this thread before the deadline.

Thank you again :)
 

elvismad

Registered User
Jan 8, 2012
289
I lost many 'friends' as mums condition worsened. My 'World' was mum for so long I had no other conversation. I had no free time as I worked 10 hour days 5 days a week and needed to be with mum in the evenings. Negotiating time off for appointments felt like I was asking for the moon. Weekends mum spent with me. My marriage suffered as I was never there. We could not go on holiday as a couple and rarely went out. I am unable to 'switch off' and am constantly anxious, even now that mum is in a care home. Every step of the way has been a battle resulting from a crisis - the only way to move things along when you are not self funding.
Mum has gone from a dynamic, vibrant, active person with a lifetime of memories, stories and anecdotes to a frail, lost lady, pacing and searching for who knows what. It saddens me beyond belief to witness her struggles so far and the on going indignities she now faces. The care staff are amazing but mum would be mortified if she was aware of her needs now.
You are the person you are because of all you have experienced. This disease takes that from you. There is nothing positive in this experience.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
I imagine the positives and negatives will vary hugely from person to person dependent on the support they have from family, friends and in an official capacity. When my mum was diagnosed with mixed dementia in October 2013 I had just lost my sister and only sibling to breast cancer a couple of weeks before. This left me alone to cope with everything that my mum's diagnosis threw at me. I knew nothing at all about dementia or that there were different types that would progress in a different way. I had to learn on the job and to do as much research as I could. This is where Talking Point came into it's own, I read so many threads to gain as much insight as I could. I also kept a sort of diary of things as they progressed to look back on to help me understand what I had managed to deal with without any help. The negatives were many and the positives few but I do feel I became a better person, more patient and caring (not normally my best traits), My logical and practical side of my character allowed me to deal with all the difficult things I came up against with finances, claiming any benefits that were due to my mum and the POA forms that needed to be sorted as soon as possible. My mum never had any carers coming in as I felt I could do it all myself and strangers in the house used to get her agitated, my dad was oblivious to it all and had nothing to do with any of it so I gave up trying to explain the disease to him or to try and get him onside to help, I just battled on alone (with a little help from Hubby and her Grandchildren) for as long as I possibly could. Crisis point came in October 2017 when I realised I could no longer keep mum safe at home. She had ten weeks in care. That was yet another minefield of confusion (a massive negative experience) of chosing a nursing home, dealing with the finances, applying for CHC, moving her to another home due to their inability to care for her after accepting her etc (this stage haunts me to this day). Mum passed away in hospital after contracting an infection in the nursing home and being unable to fight it off. So yes there were a couple of positives (not for mum but for me becoming a stronger person) but huge amounts of negatives. There just isn't enough support out there for carers who look after their own loved ones for virtually nothing and who sacrifice their own lives to do it at a much lower cost to the government (carers allowance is an insult).
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,137
Kent
It is five years since my husband died and nine years since he went into residential care and even though I am a regular reader and contributor to Talking Point in my role as a volunteer, to some extent I am now beginning to feel detached from dementia.

When I look back I cannot believe how I accepted the challenges I was faced with or how we lived through the years with dementia being the major factor in our lives.

I know we did enjoy some pleasant times but my memories are mainly of treading on eggshells in order to avoid outbreaks of aggression, managing and monitoring medication, dealing with the many occasions my husband went out looking for his real family and his real wife, broken nights, false accusations, searching for `lost` wallets and house keys and following my husband on most of his many walkabouts.

Somehow over the years, I accepted being more or less housebound.

I was lucky to have an excellent care package of two/three hours daily but was still alone with my husband and housebound for twenty-one hours every day, living with mood swings and resentment, because of course, I was the person who was making him ill.

The only thing which enabled me to keep it together was the thought our roles could have been reversed and I might have been the person with dementia and my husband my carer.

The final four years of my husband`s life, when he was in residential care and had lost most of his insight, became the years which made up for all the agony of the previous years.

The paranoia and aggression, the discontent and mood swings faded away and although he was in the later stages of dementia, I was able to experience once again the true nature of the man I had married.

I wish I knew then what I know now. I made many mistakes and handled some episodes badly. All I can say is I did what I thought best, at the time, with the information I had.

I still find it hard to accept some of the positive theories and experiences of trouble-free dementia. My husband suffered and I suffered with him.