Trevor with his wife Yvonne

My wife’s person-centred care has improved her life with dementia, and mine

Trevor Salomon and his wife Yvonne have seen many changes since her dementia diagnosis in 2013. While Yvonne’s move to a care home in 2019 was a difficult decision, Trevor explains how the staff have made it feel like a home from home.

Before her diagnosis, my wife Yvonne astonished everyone with her ability to do anything she set her mind to.

She was an amazing cook and hostess, and our house was always full of family and friends. She loved gardening and especially weeding the borders, taking pride in immaculate flower beds. There was little or nothing she couldn’t make or repair on her sewing machine. 

Early signs and adjustment

Yvonne used to happily go off to work as a bookkeeper for a local charity. She would often bring home files and documentation so that she never missed a deadline.

In 2009, the first signs of dementia manifested themselves in short term memory loss and constant repetition.

Although not diagnosed at this stage, she realised she could no longer cope with numbers and spreadsheets. Yvonne applied for a job as an online picker at Sainsbury’s and started her role there in the summer of 2012.

Switching roles

It was 2013 when we finally received confirmation of young onset Alzheimer’s. By that point, Yvonne's capabilities had dramatically declined so we simply switched roles. She became my sous chef and I took over most of the gardening. I confess, though, that I never did get my head around sewing and interlock machines.

Trevor, Yvonne and family in the garden

Trevor, Yvonne and family

Sainsbury’s astounded our family by keeping Yvonne employed for a further four years. The company found ways to constantly make her job easier and reduce her work hours. They explained to her colleagues the need to look out for her and how best to support her. 

‘I have no doubt that having meaning to her days kept Yvonne’s brain stimulated and helped to stave off the rapid decline.’

This lasted until, unable to find her way either in or out of the store, she eventually had to give up her job in early 2018.

Considering care options

Yvonne and I had wonderful support from family and friends alike. We also used the services of a day centre a couple of days a week, as well as enjoying Singing for the Brain sessions. However, I eventually realised that I was burning out. 

The tipping point for me came with the onset of Yvonne’s double incontinence. At this time, towards the end of 2018, I realised I could no longer recharge my batteries and needed to consider professional care.

I looked at three options: carers coming to our house at given times of the day, live-in carers and finally full-time residential care in a specialist dementia home. 

My kids and Yvonne’s sister were very supportive of Yvonne receiving the best care possible whilst also allowing me to lead a life. I had not been able to do so for a very long time, and with this in mind I focussed solely on the care home option.

The main decision criteria for me were consistency of care and a person-centric approach. 

‘It was important that any care home recognised Yvonne’s age and interests.’

Yvonne in the garden smiling

Trevor began to consider care options for Yvonne in 2018

Above all, I wanted an environment that would be the antithesis of the depressing care homes I remember visiting as a child to see aging relatives.

I invested three months in evaluating six care homes. We were lucky to find somewhere less than 20 minutes from where we lived which met all my criteria.

A home from home

From day one, in May 2019, Yvonne loved the home. She never once asked why she was there or why she wasn’t leaving with me after a visit. I hope this proves that, fortuitously, we got the timing spot-on, and I made the right decision.

‘Knowing Yvonne’s interests, the care home staff are mindful of which activities she finds most stimulating.’

Two photos of Yvonne in the care home; smiling and petting a cat

Yvonne moved to a care home in May 2019 and has settled in well

They have made a point of spending 1:1 time with her in the garden. The staff support Yvonne to fill the bird feeders, do simple gardening and pick tomatoes in the mini greenhouse. They also help her with biscuit baking using her favourite simple recipes, which I take in for them to buy the ingredients and use. 

For Yvonne this must have felt like home from home and was beyond doubt one of the reasons she settled in so well.

I could write at length about the last two years of coronavirus and how that has impacted Yvonne, as well as the wonderful staff at the home. But that’s a blog in its own right.

I’ll close by answering a question that I’ve been asked by many on many occasions. Do I feel guilty about having Yvonne cared for outside of our family home? The answer is a simple and definite ‘no’ because I know I would have felt guilty soldiering on when I was exhausted and ultimately not doing my best for her.

Making social care work for people with dementia

The All-Party Parliamentary Group on Dementia is conducting an inquiry into how the social care workforce can support people with dementia to live the lives they wish to lead. 

Find out more

109 comments

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Hello Trevor. I completely connected with your story. My husband was diagnosed with F.T.D. dementia in 2017. with speech aphasia. Up until approx 6 months ago i looked after him along with carers popping in twice daily. This worked well at the beginning but with the decline in the dementia it became apparent we needed more help. I thought I would be able to look after him longer at home but this was no longer viable. He's now settling in to a Dementia Nursing home 21 miles away from where i live. It's been, and still is, a roller coaster of emotions but as you said i couldn't give the 24/7 care Andrew needed and trust he will continually get his needs met in the home. I am learning to adapt to a life at home without him and visit him regularly at the home. I want to see him with quality of life for as long as possible.

Hello Christine. I feel for you and especially with your journey to the care home. At least I found a home just a few miles away from where I live. Adapating to life on your own takes time but I keep myself incredibly busy and that surely helps. Best wishes, Trevor

I wanted to add the poem I wrote a couple of weeks ago after another visit to feed my husband his lunch. He has advanced dementia and can hardly communicate at all now.

On Saturday you said my name.
It was a big surprise!
It shows, in you, I still remain Somewhere deep inside.

I wish that we could talk again
The way we used to do.
Walk hand-in-hand and reminisce,
Sit and laugh a share a kiss.

What is behind that shuttered door?
What IS inside for you?
Wish I could know you once again
And you could know me too.

I tell you that I love you still,
But do you understand?
I've loved you all these many years
And I always will.

C Trish Aze

Lovely poem, Patricia.
Thank you for sharing it
Trevor

I related to much of you story. My husband was diagnosed with mixed dementia in 2013. He went to a number of groups at church and after a while to a weekly dementia club. We'd go out for a coffee or meal weekly. He enjoyed all the social activities and liked talking with people. He also started going to a gym after being on a trial about dementia and physical activity. Of course, in time things got more difficult. We moved near my daughter's by the sea where it was level to walk daily. She had him one day a week to give me a break (she is a trained carer.) He began to fall a lot and it became difficult to get him into and out of bed. He was inconsistent at night by the. I had carers to help at bed time but after two weeks they said they couldn't manage (tho' I'd been managing on my own till then!) Two days later, I was diagnosed with breast cancer That was the last straw and I was utterly exhausted. We knew of a Home through friends and he went there a week later last July
. I had lots of tears afterwards but never doubted that it was the right thing to do. He has settled well now and is well cared for. In August it will be our 60th wedding anniversary.

My goodness me, Patricia. You've had to cope with so much. Your husband is clearly settling in well, but how are you ? Best wishes, trevor

My Dad was in a home that was amazing for the last year of his life. He was happy most times but it was my Mum who suffered she never forgave herself for Dad being in the home. I'm so glad your story worked so well xx

I think there's a generational pride issue at play here, Dot. My father was in a care home and my mother really struggled with guilt that she couldn't cope with his Alzheimer's. She couldn't have done any more for him though. Best wishes, Trevor

I looked after my first wife for 29 years, she had Parkinsons followed by Lewy Bodies, sadly after growing up as kids together after 62 years together I lost her nearly 10 years ago. I remarried someone I had known for about 15 years who had Cared for her husband with Alzheimers, sadly now after 6 years of marriage I am a Carer again as she has been diagnosed with Alzhimers, someone does not seem to be smiling on me yet on the other side of the coin being able to Care for that person I feel satisfaction. It would be good if only we had contacts online to be able to exchange emails on day to day life as friends always run over the hill and vanish.

We're sorry to hear this, Les.

It sounds like you would benefit from joining our online community, Talking Point. This is where people affected by dementia can share their experiences. You can browse the conversations within the community or sign up to reply and post: https://forum.alzheimers.org.uk It's free to use, and open day or night.

We hope this helps for now.

Alzheimer's Society website team

Such a sad story, Les. I am so very lucky that my friends were unbelievably supportive whilst Yvonne was still at home and today, with very few exceptions, they remain an important part of my life. I always remember never to take friendships for granted, as I'm sure you don't either.
You sound like a remarkable caring man.
Best wishes, Trevor

When my mom needed full-time care , 5 years ago, we found a great facility. Unfortunately she did not adapt well. The one thing I know about Alzheimer's from friends dealing and stories, is it is different for every individual. We've not been here before, and we seek information to make the best decision, but decisions have to be made. Even though mom did not adapt well, I'm thankful for the aides and providers, and the care home. Dad had cared for her, and protected her, as long as he could. The Covid lock down was difficult/horrible, but decisions had to be made by these administrators. I'm thankful for the Alzheimer's associations that give information and resources to help us make the decisions, that come as transitions become necessary. I'm glad many of your loved ones adapted well. I have no regrets. We've made the decisions we felt were the best at the time. At one point I didn't believe in angels, but mom has been cared for by a plethora of angels (doctors, aides, nurses, and administrators). I continue to thank God every day for the strength, friends, family, and care homes as they continue to help with mom's care. Keep up the good work as you care for your people.

Like you, David, I also have no regrets. The word is pointless because we can't turn back the clock and rewrite the script. It is what it is.
Best wishes, Trevor

Trevor, I have just read your blog and also the string of comments with your answers. I found it very comforting and reassuring because my situation is not a million miles away from yours. My wife, Eileen, was diagnosed with mixed dementia in 2015, followed two years later by surgery to remove cancer in her stomach. I am now at the stage when I am wondering what will be the trigger to make the move to place her into full-time care.
You have my email address with this post and I would really value having an opportunity to talk with you in some detail if this is possible.
David

Hello David, thanks for your comment.

We're really sorry to hear about the challenging situation you and your wife, Eileen, are going through.

We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours over the Easter Bank Holiday weekend) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also benefit from joining our online community, Talking Point, where people affected by dementia can share their experiences. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk

In the meantime, we have information called 'Care homes: When is the right time and who decides?' that you may find useful: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes… This information is free to download as a 21-page PDF factsheet: https://www.alzheimers.org.uk/sites/default/files/2018-12/476LP%20Care%… You can request a hard copy in the post through our online form (https://www.alzheimers.org.uk/form/order-free-publications) or by calling our support line.

We hope this helps for now - and remember to call the support line on 0333 150 3456 if you need someone to talk to, or if you would like more publications or resources from Alzheimer's Society.

Lastly, just so you're aware, Trevor will not see your email address but he may see your comment.

Alzheimer's Society website team

Like Trevor, I found that dealing with the onset of double incontinence does dramatically change matters within the home and also socially - even transportation in a car becoming a potential problem.
But ultimately a care home may well become essential when you can no longer safely leave your wife or husband for any length of time unsupervised. If you cannot go out for shopping, or do some gardening, or take the dog for a walk, it is probably time to find a care home and get some of your own life back. And yes, you will feel guilty about it. I promised my wife never to put her in a care home but she seems happy and never asks to leave.

David - I appreciated the honesty of your words. I never made any promises to Yvonne about her long term care needs because had I broken them then that undoubtedly would have triggered guilt. Carers genuinely want to look after their loved ones at home but when that tipping point comes around, it becomes an impossibility to soldier on regardless.
Take care, Trevor

Hello David. I don't have the ability to see your email address but the best advice I can give you is to engage with Alzheimer's Society personnel and other carers in your position. I remember speaking to a carer who told me to consider all professional care options when I didn't need them because knee-jerk reacting when I could (inevitably) no longer cope would probably lead me to making a suboptimal decision regarding Yvonne's care needs. I hope this helps.
Best wishes, Trevor

You made the right decision for yourself and your family ,It’s lovely to hear how Yvonne has
Settled into her care home . My mother has been in a small family run care home for nearly six years now and the care she receives is amazing ,it also enriches my life on visits to be able to interact with other residents, some who may not have family to visit them 😢

I can see that you have sooo many comments to read but I just wanted to say thank you for sharing your and Yvonne's story. I have been on my own 'brain-injury' journey and thanks to the care and support I received (despite the dreaded covid times) I am well on the road to recovery. Meeting so many people suffering from similar disabilities to myself has made me determined to do what I can to help other people in similar circumstances. I have started a counselling course and fully intend to qualify, train, and help other people that are struggling .... I intend to fully use the brain capacity that I have left to give something back to others.

Bravo Jody - you sound quite amazing.
Best wishes, Trevor

Truly good to hear of a situation that has been working so well , apart from covid intruding. I did try my father at a well-repcted care home for a while but he hated it and I could understand why. I think the staff were able to attend to physical needs but there was little to help him mentally . And the difficult behaviour of fellow residents made matters worse. Fom what small bits I could see of the set-up (covid meant I only saw glimpses of the place internally) it felt like the emphasis was on how it would appear to the family members who would have visited pre-covid. The furnishings were smart and fashionable but not always suited to older people's needs and there seemed little to actively interest or involve residents , so sitting or pacing corridors was common. There was a garden and a greenhouse -which is one of the reasons I was drawn to the place . But the greenhouse turned out to be totally empty and I don't think my father was ever taken outdoors in his weeks there.
After his stay there I arranged for live-in care back at home. His carer was brilliant and dad was very comfortable with him . It was about £1400 per week , and I needed to be available to relieve the carer for a couple of hours per day, The night shift was more tricky as I could only manage some waking nights , and that was wrecking my poor sleep pattern. A further paid carer was around £200 per night .The problem was about finding sufficient staff to cover 24 hour care .At one time the agency asked me (in the period of pre-vaccination covid ) whether I would be OK with them flying a carer in from Europe . Sadly my father eventually died in a care home which held such bad memories I could never face going near again.

We're really sorry to hear this, Sandra.

Please know that you can call our support line on 0333 150 3456 to speak with one of our dementia advisers. They will listen and provide support.

You can find more details about the support line (including opening hours over the Easter Bank Holiday weekend) here: https://www.alzheimers.org.uk/dementia-connect-support-line

Alzheimer's Society website team

Hello Sandra. Such a shame to hear how things turned out at your care home of choice. I've heard this on many an occasion. One aspect of my decision making criteria was to ascertain whether a care home had a dedicated activities team because I recognised that the carers have a specific role and don't, in the main, have time to devote to stimulating the residents. Luckily Yvonne's home has such a team and they do an incredible job. Without them the last two years would have been beyond dreadful.
Best wishes, Trevor

Trevor, your story is instructive and very useful! My wife was officially diagnosed with Vascular dementia in August 2019. I'd asked for her to be tested in Aug 2016, having recognised the symptoms in 2014. That was a difficult enough step to take in itself, my wife being the tough character she is! In the event, she completely blagged her way through that first test. Shock! But cutely very impressive!!! By 2019, even she couldn't fool anyone! Across 2017/18/19 we packed as many (new and repeated) experiences and memories as I could possibly get into our lives, knowing that time was running out for the many things we did & shared. Thank God for those years! It took 2 years for me to work out how best to care for her at home, like learning on the job. Lots of trial & error. I introduced visiting carers in April last year (just one lunchtime/afternoon a week), to give my wife a more varied companionship. That worked very well and in effect gave me an afternoon off once a week, for liquid lunches with pals or visits to the dentist! That successively had to expand - its now 4 lunchtimes a week and 1 afternoon, which is terrific - its become almost like a party every day! We are very lucky in all this.

I'm coming to the point now! Last week I had a bad dose of flu which, short though it was, brought me to my knees, rescued only by our son, who is naturally a tower of strength. I'm a tall, reasonably fit guy & have no problems with the physical (or indeed the emotional) side of things. But suddenly, I just felt I had had enough - burnt-out, like you say. My wife has many significant problems now which take a strong routine & a lot of energy to deal with. Cognitively its been a mixed experience for her. Socially, she is remarkably capable, hampered only by her short-term memory loss. But with family, friends & strangers, she is still delightfully companionable. So we can always put on a good show! Now I have recovered my composure, we carry on regardless! But like you, it has come home to me that I need to start looking at alternatives for my wife's care. When the moment is obviously right, I don't expect a troubled transition to a home - she has a clubbable personality. But now, so much is dependent on my own good health; but current arrangements are an increasingly high risk. Still, I reckon we'll get another18 zany months sharing the same bed! Cheers, Trevor and to all of you on here! R.

My goodness me, Richard..........the similarities in our carer situations are quite spooky. My wife also blagged her way through the test process at the memory clinic and we lost a couple of years with the formal diagnosis although in reality it made no difference because there's no treatment.
My biggest concern was always in relation to me getting ill, run over by a bus etc and that's why I encourage all carers to have a written plan B, signed off by those who will stand in for the primary carer and copies given to them, the GP etc.
Best wishes, Trevor

Hi I am so confused with everything, I have asked for a financial assessment and put on a waiting list, heard nothing since, I get no help from anyone I think my husband has had a third spike in his vascular mixed dementia and prostate cancer he takes medication for him to go to the toilet and then he has accidents everywhere, plus he can't see very good so doesn't notice its everywhere in bathroom plus catheter accidents, very selfish as well, when do you know that you can't do this anymore

Hello Judith, thanks for getting in touch.

We're really sorry to hear about the difficult situation you and your husband are going through.

We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours over the Easter Bank Holiday weekend) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also benefit from joining our online community, Talking Point, where people affected by dementia can share their experiences. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk

We hope this helps for now - and remember to call the support line on 0333 150 3456 if you need someone to talk to about this.

Alzheimer's Society website team

How lucky some people do get care outside the home. I had to do it all and yes I too got burn out so my husband( double incontinence and Alzheimer's) went into a home at the beginning of Covid. He hated it and caused a lot if trouble. Not being able to visit was devastating and the staff were so ruthlessly strict when I did occasionally see him.I have done one post Covid visit and it was so different. Now of course he is much further down the Alzheimer’s pathway and we have lost so much quality time. On reflection were ALL of the rules really necessary?

It's a no win situation isn't it Elizabeth. Even now there continue to be restrictions on care home visitation rights. I can see my wife but my kids and grandson can't, not even garden visits. I can tell you that the staff hate this situation because they know we all eventually have to live with Covid around us. It's all about risk assessment as much as it needs to be about the mental wellbeing of the residents and frankly Government guidance combined with the vagaries/inconsistencies of how it is being interpreted by care home management is just so unhelpful to everyone being impacted.
Best wishes, Trevor

Trevor storie was amazing my life was more or less the same keep strong Trevor and all

Thanks so much, Brian.
Best wishes, Trevor

We have just reached this point. One of the hardest decisions ever, but better for dad as he will get great care, mum can continue living her life. She was at breaking point. We will then be able to enjoy dad in happier times rather than during emergencies, whilst knowing his needs are being cared for professionally. Mum will also become his wife again and not his stressed out carer which is what it became. It really is a ‘whole family’ decision in every way. It’s very reassuring reading these messages - thank you for sharing.

Hello Georgia.
I feel for your mum but can categorically assure you that she will eventually look and feel better once dad is in a professional care environment.
It will be hard for her in the first few weeks so I'm sure the family will wrap its arms around her. My best wishes to you all

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