Dementia Support Line
Real stories
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
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.’
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.’
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.
Elizabeth Owen
saysHow 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?
Trevor Salomon
saysIt'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
Brian parsons
saysTrevor storie was amazing my life was more or less the same keep strong Trevor and all
Trevor Salomon
saysThanks so much, Brian.
Best wishes, Trevor
Georgia
saysWe 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.
Trevor Salomon
saysHello 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
Juliana Blanc
saysWell done your story is one of optimistic and hope for us all who went thorough or are going through what you went through between home care and care homes. Well done glad you found a very caring home for your wife.
Pete Middleton
saysThank you for sharing the story of your journey with Yvonne.
It is a powerful and inspirational message for us all.
Trevor Salomon
saysThanks so much, Pete, and great to see you again today via Zoom. I think we'd make a great double act !
Richard Dakin
saysI relate so much to Trevors story. I looked after my wife for nearly five years before having to make to tough decision. She made the transition from day centre to care home much easier than I envisaged. In fact I think she didn't distinguish between the two making me think day care to care home is the way to go if possible. She is so well looked after in a small care home all my fears have been allayed. The staff are marvellous with her.
Trevor Salomon
saysSo good to read your post, Richard. I truly believe it's all in the timing which in itself might just be a matter of luck
ALAINE ORWIN
saysWhat a beautiful story honest and to the point. One thing you to remeber is you need to remember to look after yourself as well.
My Mum had Dementia I know how you feel. Hugs to all
Trevor Salomon
saysThank you so much, Alaine. You're right - if you don't look after yourself then you don't have the strength to care. It was sad enough my wife succumbed to Alzheimer's. There was no way I was going to allow its effects to ripple their way through my family.
Antonella
saysThank you Trevor for sharing your story. I always like to read other people's experiences. This is a very hard decision to make, I too had to find a care home for my Dad, and I was distraught. Although he settled in well, I still wish I had been able to keep him home longer.
Trevor Salomon
saysThank you, Antonella. The day my wife went into care was very traumatising for me , mitigated only by the fact that my wife was unfazed by her new surroundings and settled in so well
Janet Rodwell
saysMy husband was diagnosed with early onset Alzheimer's Disease in January, 2016 and like Trevor we have tried to live through the journey as best we can. Starting day centre in June 2021 at 2 days a week progressing to 3 days a week.
I have found Trevor and Yvonne's story very helpful at this time, as my husband is starting his first 2 week respite break on 9th April. I know this is the most sensible move to make for me to recharge my batteries due to disturbed nights etc., but guilt feelings do enter my head. I like Trevor, have worked hard to ensure that the Care Home is the right one and is only 15 minutes away from our home and I hope my husband can like Yvonne, continue living with this disease in the happiest way possible.
Trevor Salomon
saysBest of luck with your brave decision, Janet. I feel sure it will work out well for you. Respite often turns seamlessly into full time care when the care home choice is the right one.
Elizabeth Owen
saysMy husband is unable to sit or walk because of a back condition. He is also doubly incontinent and has Alzheimer's. Covid has been difficult as I went for more than 80 days without visiting. Even now it is only one visit a week! He is unfortunate in having a high IQ so he does need very specialist care to keep up with his interests. The staff in the home do their best with regards to his physical needs but have no time for in depth discussions. More visits would help but this doesn't seem possible. It is no quality of life at 82 for him. He once had a retired teacher as a regular visitor to the home which worked very well, but since she retired apart from immediate family members’ visits he has lacked the intellectual stimulus he craves. Books and newspapers help but he finds holding them difficult. He can’t be unique in this respect.
Trevor Salomon
saysHello Elizabeth. Covid has played havoc for care home residents especially those with any form of dementia. My wife was like a lost soul for so much of the last 2 years but as the rhythm of life in her care home is slowly but surely starting to normalize so, remarkably, she is becoming much more alert. Best wishes to you and your husband
.Patrick Leonard Hawkins
saysIt is really pleasing that Trevor has found an excellent care home for Yvonne.They are few and far between.The decision to place Yvonne in a care home and the timing is understandable. In Trevor and Yvonne's
case probably timely and spot on.It would be interesting if Trevor would write a blog on the impact of coronavirus it had on Yvonne and himself, No or restricted visiting in Care Homes etc.
Trevor Salomon
saysHello Patrick. I will gladly write a blog if I'm asked but I can tell you that my wife declined dramatically once her care home went into lockdown. Devoid of visitors and with the staff's faces hidden behind masks, the familiar environment disappeared almost overnight. Two years on and she's remarkably more alert, now that the rhythm of line in the home is showing signs of normalising.
DAVID WILLIAMS
saysPutting my wife into a care home during the pandemic did make me feel that she was being committed as if under the Mental Health Act. Particularly noticeable were the doors one could enter by, but would have to have a member of staff let you out! The "slots" for visiting were infrequent - about once a week - but then the home went into full lockdown for around ten weeks with no visits possible. We then had to rely on "Facetime" online for making contact. It is still not possible to take my other half out of the home for day trips - something which could introduce infection into the home. The Lateral Flow Tests remain a necessity prior to visiting as well as masks when inside the home. It is not the best time to be in a care home!
LINDSAY HORNER
saysJust going through this with my husband Brian. Coping at home at the moment but dreading the point when I have to surrender him to someone else for care. This article was helpful although finding a Care facility that will be affordable and as good as Yvonnes will be a challenge I am not looking forward to.
Trevor Salomon
saysLindsay I spent 3 months visiting and assessing homes in order to feel confident I'd made the right decision. Don't leave it too late to start the process is the main tip I can give you. Good luck.
Lesley
saysReading your blog I was very impressed with Sainsbury’s support of an employee with dementia, and the job you did too! I’m caring for my husband who has Alzheimer’s and have just reached that point where I’m wanting to look at Care facilities. I’d be interested to know what criteria you used when you were evaluating these places. Is there a list of things to look for, or did you just go by the ‘feel’?
Trevor Salomon
saysHello Lesley
I wrote the below for a friend of mine who is also looking for a home for his wife. I hope it will help you.
It is based on my own experience as well as information issued by eg Alzheimer's Society and other dementia charities and is over and above the key specifics of care homes having a dementia unit and dementia trained staff.
Choosing the right care home can be challenging. Some might cost more than you can afford. Some might have limited bed availability, or you might like a home that doesn’t cater for the particular needs of the person you care for. If they have specialist needs, they might be offered a placement in a home that isn’t close to you, which can be hard if you’re trying to visit regularly.
Preparing a personal checklist of your requirements and wishes may be helpful for you to take during visits to potential care homes.
Alongside this, do some research: you’ll find Care Quality Commission (CQC) reports online for each home in England. In Wales, this is the Care Inspectorate. These independent care home regulators visit and rate every care home based on residents’ quality of life and the care delivered. You can ask the care home for a copy of the report when you visit.
Sometimes, the most helpful way to find out about a care home is to talk to residents, relatives and staff.
Speak to your friends, family, and other local people to see if they have any recommendations about care homes.
Visit the website carehome.co.uk, which hosts reviews by families, as well as useful summaries of what facilities each care home provides.
Considering what makes a good care home
Every family’s needs from a care home will be different; but a warm welcome, with residents and staff who seem content and involved with each other, are good indications of a positive environment. Other questions to consider are:
• What is the ‘feel’ of the home?
• Use your senses: how does it smell? Is it warm enough? Is it noisy? Do the residents and the staff look happy?
• Are there opportunities for the person to continue with their hobbies and interests? Is there a team dedicated to arranging both general as well as person centric activities ?
• Is there access to books, board games, a radio, a television, puzzles etc.?
• Does the quality of the food seem good?
• Is there secure access to outside space and fresh air?
• Is there regular access to healthcare and wellbeing support, including doctors, dentists, podiatrists and hairdressers?
• What are the visiting times? Are they flexible?
• How involved can families be? What resident and visitor groups are there?
• What are the laundry facilities like? Ask other residents or visiting families about this if you’re not sure how to tell
• Are there links to the local community, for instance, can residents get their papers delivered? Attend their place of worship ?
A compassionate, skilled team with supportive leaders is vital to a good home. Talk to the staff and home manager about how they provide care; what training the staff take, and how they make a difference for the residents. If the manager is new, you could ask about their vision and hopes for the future of the home.
The impact of moving into a care home
Moving into a care home can be a significant change for the person with dementia and for the people around them. Discussing the move throughout the process, with the person with dementia, and with the wider family, can help avoid disagreements in the future.
Moving into a care home can be a distressing experience, but it can also be a positive move, leading to improvements in health and more opportunities for socialising and fun activities, for both the person with dementia and also those who care for them.
Some family carers can experience loss, grief and guilt when the person they have been looking after moves into residential care – particularly if they are a spouse or partner. But the support of the wider family, friends, professionals and the care home itself, can be of great help during this transition
For the person with dementia, they may feel the loss of attachment to their main carer, as well as of their home and normal routines.
There are practical things that can improve the process of moving into a care home, including:
• spending some time at the care home prior to moving in (I did this with Yvonne)
• taking in familiar and personal items, such as photographs, paintings from the walls, favourite ornaments, so that the room looks comfortable and familiar
• taking in furniture, with the agreement of the care home
• ensuring comfort items are available, such as a person’s slippers, duvet or pillow
How you can help
Once the person has moved into a care home, there are things you can do that may help them settle in. However I strongly recommend that no-one visits for at least the first 5/7 days. It may sound cruel but it’s important to start to break the link with family members because the staff have to become the resident’s surrogate family.
Building positive relationships:
• Get to know the staff by name and help them get to know you both too
• Speak to the wider team, including cleaners, gardeners and kitchen staff; everyone can contribute to making a positive difference
• Share your essential knowledge about the person with dementia. This will help staff deliver the best care possible. Everything is important: how they take their tea; what their favourite radio station is; what football team they support etc.
• Develop and share ‘life story’ work, through photograph albums, life story books, music play lists and storyboards that can be actively used by staff and visiting family and friends to communicate and interact with the person with dementia.
• Keep the connection between you and the person with dementia by continuing activities that you have enjoyed together, such as: listening to music, drinking tea/coffee, reading the newspaper, doing a jigsaw puzzle, watching a programme on the television
Work with staff:
• Thank staff and tell them when you have seen care that is good, and look for solutions together when care is not as it should be. Ask for regular review meetings to discuss any issues as they arise
• Develop your own knowledge about the patterns of work and routines of the home; enquire with staff about how you can be involved or support at mealtimes or during group activities etc.
• Offer to support staff with activities such as care planning (establishing care in the present), Advance Care Planning (making decisions about future care). Keep talking and share ideas to improve care
• Think about joining the home’s relatives and residents’ group to support the care home
Brenda Rokins
saysHaving read Trevor's story I feel inspired to do the best for my husband who has dementia with alzheimers and have struggled through the pandemic to do the best for him.
Trevor Salomon
saysI wish you well, Brenda. I can honestly say I'm not sure how I would have coped looking after my wife over the past two years had she still been at home.
Deborah
saysVery well written my husband has Alzheimer's for the past 9years now goes to day care 3 days a week I do worry about the future when the time comes for a care home .Thank you .
Trevor Salomon
saysDeborah - I think worrying is normal. My advice is to plan ahead and not leave the care home (or other professional care options) until you really can't cope at all. Best wishes to you
Jeanette
saysReading this has given me more confidence in looking for a place for my husband. The onset of his double incontinence with everything else has left me burnt out and severely depressed .
Trevor Salomon
saysI totally empathise with your situation, Jeanette. Double incontinence for most carers is one of the tipping points which forces the realization that professional care support must be embraced. Please don't ignore that burning out feeling. Best wishes