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.
Anita Neary
saysI am so happy your wife is happy in the home. I am caring for my husband (71) who has Alzheimer's & vascular dementia. Last 8 years. With carers who come in 3 times a day which I pay for. From Ian 2022. After 3 wks in hospital which has left him bed bound. Due to lack of physio!!! The carers are lovely with my husband. And he enjoys their visits. I am trying to get a hoist so my husband can sit in a chair. Plus a new hospital bed as his is to short and he can't straighten legs now. My husband was very active before going into hospital. Hope people have a better experience.
Trevor Salomon
saysBest wishes to you, Anita. You sound like a wonderful caring wife to your husband
Penny
saysWas it expensive
Trevor Salomon
saysThere's no such thing as a cheap care home, Penny ! If only. For London I would say it's par for the course in terms of cost. For me it was all about the care although I have to say Yvonne's care home is a relatively new build so its ambience is more like a small hotel - bright, airy, clean and no smells
Ronald Simpson
saysHi. Trevor. What a wonderful testament to your wife, in many ways it reflects my situation to a T, but unlike yourself I am still soldiering on with all the trauma's associated with caring for my wife. My wife had the official diagnosis in 2018 but like yourself I knew something was'nt right for maybe 4/5yrs before that. I will continue to care for Christine at home for the moment, but as you say at times the pressure gets so bad I get depressed and forget that I still have a life , obviously the time will come when I will have to consider respite or a carehome, but for know I will continue caring for Christine in our own home. Thanks for your story. And wish the best for your wife and yourself. More power to Alzhiemers Society. V.B. Regards. Mr. R. Simpson.
Trevor Salomon
saysHello Ronald. I haven't yet met a carer who didn't use the expression 'soldiering on'. My advice to you is don't allow yourself to reach the point where you're so 'battle weary' that you can't make the right decision for your wife and therefore for yourself. It will be emotionally difficult but it has to be done. Best wishes
Ronald Simpson
saysThanks for advice Trevor , you are correct about becoming battle weary and not realising it . Christine as just spent 5days in a care home as I had to go abroad to sort a few things out as originally we were going to live in Mallorca for retirement. On my return I collected Christine from the home and was surprised by the way she had obviously enjoyed the change. So for the present I may try periods of respite for her and myself . Thanks again. Take care & stay safe. B.R. Ronald Simpson.
Trevor Salomon
saysHi Ronald. I know of many instances where people have gone in to a care home for respite and, to the astonishment of their family, transitioned into becoming a permanent resident because they've enjoyed it so much. Quite bizarre don't you think ? Best wishes, Trevor
Graham Kemp
saysI am now in a similar situation to Trevor and Yvonne in that residential care or home care are the two options for my wife and I. It's comforting to know that I , together with support from our family will probably come to a similar conclusion. The similarities are quite uncanny. Thanks for the blog it helps.
Trevor Salomon
saysBest of luck with this, Graham. Please give yourself enough researching time to be confident that, almost by a process of elimination, you know you've arrived at the right decision.
Richard Hawkes
saysI read this personal account,of Trevor’s difficult decision ‘s re his wife Yvonne’s long time needs for now and the future.Thinking caring and loving,and acting i n her best interests,at all times. I agree that any placement be selected and choosen extremely careful.,based around that individuals needs.
Trevor Salomon
saysThank you for your kind feedback and comments, Richard
JC
saysHaving cared for a young family member with dementia over just a few years it sounds to me like you made the perfect decision under the circumstances. We never had time to get to the care home stage, caring at home towards the end. That was right for us at the time, and your decision is right for you all, hats off to you. :)
Trevor Salomon
saysThank you for your kind feedback, JC. So sorry to read of your family loss
Christopher Robert Bradley
saysA group like this has much support for people getting towards the end. Keep up the good work.
Christopher Robert Bradley
saysThis seems to prove that you are doing a very good job.
Keep it up, please.
Trevor Salomon
saysThank you, Christopher
Jeff bolch
saysSimilar story to Trevor and Yvonne wife diagnosed with early onset Alzheimer’s, managed for 5to6 years when one day I came in from the garden and my wife said who are you.couldn’t look after her anymore as she would not stay in the same room as me. She went into a care home were she settled very well. Gradually became worse over the years and is now in continent and does not talk anymore, I know she is in the best place for her and don’t feel guilty anymore . All the best Trevor and Yvonne
Lesille
saysWhat I feel Is that. There iisnt enough of thesehomeswwho and the the
staff are short handed and have no time with. The patients what I feemy house out to this wonderful family family
l
Trevor Salomon
saysVery similar situations indeed, Jeff. My wife does still recognise me and I retain the ability to make her laugh. When I can no longer do this then I will have to accept that her Alzheimer's will finally have taken her away from me. Best wishes
DAVID WILLIAMS
saysRecognition of faces seems to last much longer than recollection of names and I have learnt that there is no point in trying to constantly rehearse who her family and friends are - she will recognise them ( or pretend she recognises them?) when they come to visit. I am also getting used to one sided conversations.
Terry Mullard
saysMy wife was diagnosed with Alzheimer's in Nov 2017, although signs were there long before that.
I cannot leave her alone, cannot go out and do absolutely everything at home, including dressing pat and dealing with many wet pants and pads and fairly often complete changes of wet bedding.
We have a carer for five days a week for three hours each morning. That helps but doesn't solve the increasing problems like Pat saying she doesn't like me and she wants to go home and this is not our house...much more. I try and accept that a care home will have to happen sometime. But I do not relish spending our kids inheritance on care homes. It is so unfair that because we have saved money rather than spend our money on posh clothes, cars, restaurants, shows etc like some people, who perhaps rent lovely houses rather than own, hence care is paid on what savings you have instead of what you earn, a mush fairer solution. I don't know what the future holds but we have been married for 56 years so I won't give in easily.
Terry Mullard
Trevor Salomon
saysHello Terry. I do so agree with everything you wrote. The stress of being a carer (and bravo you for everything you're doing for Pat) eventually transitions to the angst of seeing your savings evaporating into care costs. The system is beyond unfair and I just despair. Our retirement days are so far removed from what I envisaged. My best wishes to you.
Karen Whitehead
saysWhat an inspiring reflection. Dementia is such a cruel disease but even crueller when it’s early onset. I hope I could make such a selfless decision should I have to.
Trevor Salomon
saysThank you for your kind feedback, Karen. I hope you never find yourself in my position
Maureen Price
saysThis story about Trevor and his search for the best possible care for his wife Yvonne is so heart warming because the honesty about coming to realize that you come to a point when hard decisions have to be made not only for yourself but the whole family..So happy to read that Yvonne has settled into her new home...I pray I shall be so lucky if I come to the point of needing to do the same for my hubby who is now 82 and living with this horrible illness for the last 10 years we have our fair/good days !
Trevor Salomon
saysHello Maureen and thank you for your kind comments. Being in denial and delaying making difficult decisions was never my style. I'm fortunate that I've always seen an obstacle as just something that has to be circumnavigated and if I don't know how to do this then I research to find the solution. You're right though - it is a horrible, horrible disease which absolutely saps the strength of us carers, both mentally and physically. My best wishes to you.
Cynthia Pearson
saysI had a similar decision to make 12months ago and I realise it was the right one for Eric he was happy in the home and the carers were wonderful with him he loved music and dancing and they would dance with him,so I know how you felt having to make your decision.
Trevor Salomon
saysThanks for your feedback, Cynthia, and I'm so glad that Eric settled in so well in the care home. What a relief for you.
Joanna Jevons
saysWhat a sad but beautiful story. I don’t know this couple, however it’s clear that Yvonne made a wonderful choice of life partner. Very best wishes to them and their family.
Trevor Salomon
saysThank you so much for your lovely feedback, Joanna.
Michael Young
saysHeart-warming, tragic, and inspiring ...
Thank you.
Trevor Salomon
saysThank you, Michael.