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Living with Dementia – A Relative’s Story

Signs of dementia

When a loved one starts to show signs of dementia it can be a challenging and stressful time for relatives. Here, Melisa Westwood, the daughter of Patricia Winney, one of our wonderful residents at St Katherine’s House care home kindly shares with us her emotional story.

Mum has always been loving, caring, and supportive. She was my friend and my confidant. A devoted housewife, a keen gardener, and the best cook I knew. She doted on her three daughters, their families, and her latest dog Millie. I was very close to her and a day rarely went by when we didn’t speak or meet up.

Shortly before Christmas 2018, we lost my Dad. Mum suffered the grief you’d expect of anyone who’d been married for 50 years. She coped well but around a year later, something wasn’t right, she’d changed, she wasn’t the Mum I once knew. I tried to shrug it off but as her actions became more and more uncharacteristic, I gradually felt the need to watch her every move. Without realising it, I’d become her daily carer.

The first signs of dementia

I often blamed the bereavement process andF found myself thinking “I mean she’s just lost her husband, her life, she may have just forgotten, let’s see how she is tomorrow.” But days turned to weeks, to months and on reflection, her behaviour deteriorated quite rapidly. Perhaps, even now, I wonder if my Dad had been masking some of her behaviours.

She was difficult to predict and seemed to have forgotten the basic needs and responsibilities of a grown-up. She forgot how to cook for herself, slept erratically, didn’t wash or change her clothes, and felt it acceptable to contact us and neighbours during the middle of the night and early hours.

At times it almost felt deliberate, like she was trying to get my attention. Was it a cry for help? I asked her what was going on but there was little conversation and she felt it was normal. We spoke with a doctor who prescribed anti-depressants and injections for a vitamin deficiency. But I felt there was something more to it.

From that moment, my life was on edge all the time. Waiting for an unsociable visit, phone call, or worse, a call from the police. Even a dog bark or text notification would make me anxious.

You would cling on for a glimmer of hope, she’d have managed to reheat herself something that you had pre-prepared her. Later I’d find out that she’d just eaten packets of crisps and discarded what we had brought. She genuinely seemed to forget what to do or how to cook.

Dealing with a diagnosis of dementia

The months leading to her diagnosis of vascular dementia were very tough. It’s a painstakingly long process with no real definitive answer that you hope someone will come up with.

You lay awake with worry every night, what she might be doing, or is going to do next and you fear for their safety. Then there’s the more practical side, where can we go from here?

You question everything and it doesn’t seem real. And the rest of life doesn’t give you a break either.

As many families will understand, we lead busy lives.

Life doesn’t slow down for you to accommodate this disease.

Life doesn’t stop for the needs of your own family.

Of course, if I had a list of options or even an east wing attached to my house I’d have had her move-in in a heartbeat but frankly speaking, she didn’t feel like my Mum anymore and I began to question if I even felt safe. It was horrible and uncomfortable.

It came to a point where I was exhausting myself and our family. I couldn’t help her anymore, what could I do? I needed help and so did she.

Finding the right care

Struggling to find a solution, we arranged to meet with Seung Ping, the Care Home Manager at St Katherine’s House. We were both exhausted, physically and mentally, completely at our wits’ end but when we spoke to Seung Ping it felt like the weight was beginning to lift from our shoulders.

At last, someone was listening and might recognise what we had been going through, someone might know the sort of care my Mum needed.

Seung put us in touch with Gold Care Homes’ Customer Relationship Manager, Victoria Sives, who provided us with great support and arranged a room at the home. Mum could even bring her dog and personalise her room just like a home from home. After just a few day visits and seeing the way Seung’s caring nature put Mum at ease we knew it was the right choice. Mum has now been staying at St Katherine’s full-time for just over a year, having moved in literally the week before the first national lockdown last year.

It doesn’t even bear thinking about how things might have gone otherwise.

Whilst it was difficult to close a chapter of Mum’s life, it has allowed her to create a new one, with some of the old Mum coming back. To see her smile is all we need.

My Mum’s dementia has affected the entire family and while Covid prevented us from seeing her at times, it has been the safest and best move for her and ourselves. The team at St. Katherine’s House have done everything and more to ensure the home remains a safe environment for the staff and residents. I cannot thank the staff enough for how they have managed the pandemic. It really does appear to be the safest and happiest bubble to be in. The thing I love about St Katherine’s House is that it lets people be themselves. Living with dementia in society is frightening but within the safe environment of St Katherine’s House, it’s like a community, everyone’s accepted.

Enjoying life whilst living with dementia

Mum has never seemed happier. She now can get involved with lots of different activities with a range of wonderful characters and carers. If she forgets anything, she has the team on hand, and, in reality, it doesn’t matter what she tries to get up to anymore. We can let her be and accept her for how she is, living with this terrible condition.

We too can now live our lives, without worry, safe in the knowledge that she is close by, she has friends, she can have a dance, is well fed, well cared for, and looked after. We can’t ask for any more than that.

Your Care Options

If you need help supporting a loved one living with dementia, Gold Care Homes offers a range of care choices, be it residential or respite care, across its 22 homes. To find a Gold Care Home near you visit https://www.goldcarehomes.com/our-homes/ email enquiries@goldcarehomes.com or call 01895 257 010.

 

Resident and family testimonials

My late wife stayed in the Acton Care Home from the end of April 2018 until 21 September 2018 on which day she died there. In that time my wife was looked after in an excellent manner. All the nurses who cared for my wife were excellent, very professional and also very warm and friendly. My wife’s dignity was totally respected. I cannot thank enough all the staff at Acton Care Home. They deserve a 5-star recommendation.

Dennis S

(Husband of Resident)

My Uncle received excellent care at Alan Morkill House. The staff were always helpful and friendly and he was made to feel happy, secure and comfortable as he spent the last two years of his life there. I would recommend the home to friends and family.

Christine B

(Niece of Resident)

This placement proved a successful one giving my friend the best quality of life. The environment is peaceful and caring. I was most impressed by the kindness and professional skills of the staff in the home. Always going the extra mile.

Kathie M

(Friend of Resident)

Since my mum-in-law moved into Baugh House in April they have been nothing but fantastic. She has settled so well. The home itself is spotlessly clean and the staff go over and above to make residents feel at home. And I mean everyone domestic staff, care staff and admin. Ten out of ten to you all.  Can’t thank you all enough for all you do.

Georgina C

(Daughter-in-law of Resident)

It’s hard to describe the happiness you feel in this building. The staff really care. I called Dad the other day and could hear music, when I asked him what it was he laughed and said they sing and dance, it makes us laugh. Sums it up really. If you want a home that goes the extra mile in every area then I wouldn’t hesitate to recommend Bletchley House. Improvements have been made to the home and continue to be ongoing. The last 6 months have seen many positive changes. Thanks for all you do.

Barry C

(Son of Resident)

Dad has settled in well. He is very complimentary of the care he receives and says he feels safe and comfortable. I have great peace of mind and am confident he is being cared for. He loves the activities and the company of the other residents.

Lucy S

(Daughter of Resident)

I visit my Aunt on average three to four times a year and I always notify the staff at Burrows House of my forthcoming visit. Each time I visit I am constantly impressed by the care and kindness towards my Aunt by the staff, all staff. Her physical care is excellent. She is well presented. She is treated with dignity. The staff understand her needs and appear to know her well. Her room is cosy and clean.

Claire R

(Niece of Resident)

Staff have been very supportive to Mum, who has struggled to settle in. Mum has now made new friends and her health and wellbeing have greatly improved. The facilities are fantastic and Mum reports the food is lovely. The staff communicates well and always keeps me informed and updated.
Would highly recommend the home.

Rosalie T

(Daughter of Resident)

I would like to say that the personal care provided by the staff who looked after mum on a day to day and long term basis was excellent.

Paul F

(Son of Resident)

The staff are friendly and caring. They listen and are very welcoming and attentive.
They looked after my friend well and could not have done any better.

Kylie A

(Friend of Resident)

We cannot speak highly enough about Kent House. The staff are excellent, much of the reason for this is the example set by the managers, they are excellent. We are very grateful for the kindness and care they show to all of the residents, it’s a joy to see.

Christine K

(Daughter of Resident)

When we visit my aunt she is contented and is well looked after and well cared for. We are very grateful for the way the home gave her such a happy day for her 101st birthday. Staff were very kind to her.

John W

(Son of Resident)

The care the staff at Martin’s House give my dad is outstanding. The staff have been exemplary through the COVID crisis and have steadfastly given an excellent level of care during the most difficult of circumstances. Their professionalism and excellent people skills have helped clients and families alike, up to and during the COVID crisis. The staff have all taken the time to get to know me as well as my father. I am so grateful for everything they do for him. My dad is so happy with the care he receives, he is treated with respect and dignity.

Jane S

(Daughter of Resident)

The team at Peregrine House are caring and responsive. In this difficult time, they have been meticulous in protecting the residents, keeping them safe and keeping daily life as normal as possible. This is remarkable, given the challenges – every single member of staff has clearly worked tirelessly to maintain safety and wellbeing.

Eleanor K

(Daughter of Resident)

We are both very happy with the care she gets. Pre covid, I would visit every day, and I have always enjoyed the staff’s company and pleasant manner. I really do appreciate the care the staff give to my wife.

Brian S

We got in touch with St Katherine’s for respite care for Mum when she was extremely unwell with dehydration. They were extremely compassionate and helpful to us when we were in a situation that we were finding difficult to deal with. Every one of the staff has been so kind and caring toward Mum and ourselves. We could not fault the care she is receiving and she is very happy there.

Janis G

(Daughter of Resident)

I can’t say how fantastic the team are at The Tudors in looking after their residents. They are brilliant, always caring, always have time to discuss your relative’s needs with you, and it is clear how much they care about the people they are looking after. Mum is happy and safe; what more can you ask for.

Karen W

(Daughter of Resident)

Extremely helpful, very friendly, cannot fault the staff. Cleanliness is excellent.

Gillian S

(Wife of Resident)

Very pleased with Mom’s care. Staff are excellent and provide a first-class service. The home is well managed and maintained., always clean and friendly. We now know Mom is being well cared for and the staff knows exactly how to deal with her needs. Cannot fault St Stephens.

S R

(Daughter of Resident)

Very welcoming, all staff and management embrace you an make you feel at ease and are very caring to all. As a visitor, they are so friendly and will do anything to help.

Janet W

(Wife of Resident)

Gold Care Homes - Carehome.co.uk
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The Dementia Care Personality Award Finalist 2018
Compassion in Care AwardWINNER
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Lifetime Achievement in Care Award Finalist 2018