When my mother was diagnosed with mixed dementia (Vascular dementia and Alzheimer’s) at the age of 78, our world was turned upside down. I'm sharing my story to shed light on the challenges and triumphs we experienced while navigating adult social care and other care services, in the hope it might guide others facing similar circumstances.
Background
My Mum, who was always a beacon of kindness and love, began showing subtle signs of memory loss a few years ago. What started as occasional forgetfulness has now evolved into significant cognitive decline. The official diagnosis in 2022 was heart breaking as this was the same as my grandmother (my mother’s mother) which meant we knew what the road ahead had in store for us a family.
In early 2023 after my father broke down, saying he could no longer cope, we took the decision to buy a new home together so I could lend support to my father while he took care of Mum. Unfortunately, on the day my parents were due to move into our new home, my father suffered his first stroke. Subsequent strokes over the coming weeks, saw him pass away in August that year. And so, my role as supporting my father, turned into that of primary caregiver for my Mum.
We were doing OK for the first couple of months but following a fall while my mother visited a relative, things started to unravel.
By the end of 2023, we were struggling. My mother's personal care needs had increased, her behaviour had become more volatile, and our relationship was at an all-time low. I was no longer my mother’s son, but I was now her carer.
Navigating The Maze of Care Services
Now I would like to think of myself as a reasonably intelligent man, but the fragmented nature of information about care services left me feeling confused about where to start. Google was no help… Whilst there are many organisations out there who offer support, it was knowing where to turn to first. Even when finding our local social services team, the information about financial assessments, eligibility criteria, care directories and the choice of care providers – just added to the confusion. Where do you start? After chatting to Age UK, they pointed me in the direction of the local council to make an assessment.
Our first hurdle was the online initial assessment by social services. The process was extremely quick, with a call being received just 2 days after I filled in the application. A massive achievement, as this took place between Christmas and New Year.
Within 1 week of the application being made, we were offered 12 weeks support and Mum received her first AM call to support with her personal care. At this stage, it was deemed this was all we needed. Mum was doing ok with the rest of her day, and with myself working from home I could monitor the situation, make lunch, evening meals and get Mum to bed.
But it was here that we started to question the support that Mum was receiving…
Receiving Care
One of the key needs for dementia patients is continuity of care and routine. Whilst we were able to agree a time window in which the team would arrive, we found ourselves in a situation whereby we never knew who would be arriving. This made Mum very uneasy, with some mornings the carer being able to help easily, and on other days, quite the battle.
After an initial 12 weeks, we were needed to find another care provider, so took the decision to go with a team that could guarantee just 2 carers, so we became familiar with them, as did Mum.
This decision though would end up proving extremely costly in the long run, and something that in June, we had to move back to a cheaper provider, again with less continuity.
So, what prompted the changes? Well, firstly, we eventually received the financial assessment outcome detailing the amount Mum needed to pay each week.
Let’s take a moment to consider this document… Multiple pages, of technical speak which I could barely follow, and in the smallest of writing Mum's assessed charge. Why so complex? No covering letter setting simply advising of the charge (with the calculation attached), just the assessment, and you are left to understand what this means. It is of little surprise that so many go without the support they need if this is the standard of communication.
I should just mention that Mum’s income and savings were below the amounts for which Social Services would provide support. However, we were gobsmacked to find that with the assessed charge and the additional fees above the maximum council award, Mum was being asked to pay just under £1000 per month. The council would only assess based on a 45-minute visit when the visits were all 1hr minimum, and the fees were capped with no travel costs. Her pensions would only just cover this, with little left for bills, food etc. Mum’s savings soon began to dwindle. I do not know what people do when they live on their own.
So, providing the right care for Mum, was coming at a premium.
Secondly, one Sunday morning, we woke at around 7 am to find my mother’s light on, door open, with her lying face down, in a pool of blood. We still don’t know what happened that night, but this was the point when Mum's decline started to quicken.
We had just moved to the new cheaper provider (again with new faces, names and no consistency), but Mum's decline, and care needs increased at a speed we had not seen before.
By now her speech had started to go, memories from the past 18 years gone, she now didn’t know my husband’s name, and she had started to regress, at times, into a childlike state. On the bad days she would sleep, wander around the house, and had become depressed and on the good days, she was even worse. Odd you might think that the good days could be worse, but on those days when Mum was still here, she knew the journey she was on, having had a career as a dementia care home manager and see it with her own mother.
Mum had now started to wander at night times, the incontinence had increased meaning Mum needed more evening personal care than I could provide, and so back to Social Services we went. We had been allocated a social worker, whom we met with, and it was determined that they would now provide support in the evenings. Great, a simple process of meeting, they went away, and funding was in place… Well not all funding as again the evening calls travel was not included. More costs.
We had also managed to arrange day care for my mother twice a week at the Local Dementia Group (a great group and some lovely people who run it), as we felt this might help with her depression.
It did, but the subsequent effect of Mum now having a busy week with Day Care and companionship, was that by the weekend, she would crash. We had days when she would sleep for 22hrs non-stop, when awake she would be uncommunicative, Nighttime wandering being the norm, the daily washing of bed sheets, changing my mother 3 or 4 times a day.
We soon came to realise that we had left our old lives behind, not going out at weekends, friends not wanting to come and stay, with the threat of potentially having to give up our home.
Despite reaching out to social services again, we faced challenges in getting consistent and adequate support. We had been assigned a social worker, but communication was challenging, and the overall support we needed seemed elusive. Rather than being proactive, they would continually ask me what I needed, so we could only ever react to an individual situation as it arose. Mum's increasing needs and the ongoing requests for changes (Day Care, evening care, lunchtime care) soon became a source of frustration from the council.
But I didn't know what we would need going forward, how could I? Comments were openly made about the progression of the dementia and Mum's ever-changing needs, which led me to feel like I was doing something wrong, and guilty that I couldn’t predict her needs.
The continual back and forth, fragmented approach to Mum’s long-term care, was something surely the council would have been able to perceive? During this time the council had issued us with an invoiced for £2,600 for a charge we believe we had paid, and despite various emails to the council’s finance team, emails to our social worker (who had promised to sort things), chases for payment, we made a complaint to the council. No one was listening.
What do you do with that? With a Mum you could see slipping away day by day, we had to make some decisions.
We already knew we couldn’t afford full time care costs, my mother had less than £6,000 in savings so we felt we had no choice but to sell our home just one year after moving in, to free up the gift my father gave us.
Over the summer, we put the house on the market, hired a weekend live in carer (at our own expense) so we could try and find a new home.
Hoorah, we had been on the market one week and we had an offer at full asking… 48hrs later, that offer was withdrawn. In 10 weeks of being on the market, we had no other viewings, the local property market had collapsed.
Had we overpriced the house? Very possibly but when you have invested over £100,000 (not including the cost of the house) when we purchased the price would have already seen us make a loss of £40k.
With the stress and worry of the financial situation, the increasing needs of my Mum, trying to keep a full-time job (my employers have been amazing over the past 2 years and am extremely grateful for all the support they have given me), I didn’t know where to turn. It honestly felt like we had been abandoned.
And so, I went back to Social Services. I contacted our social worker, who had washed her hands of us. A curt email returned telling us to simply contact customer services for more support.
But whilst I was annoyed that we had been brushed off, it was the best thing that has happened to us, and then things started to change…
I first had a telephone call with our new social worker on the 17th of September. By now, Mum's’ behaviour had become more erratic during the day, she no longer knew my name (they say the first time they ask you who you are, is like the day they die, it is!), the incontinence now saw me washing clothes, bedding, carpets throughout the day, the wandering into my conference calls semi-naked and the child like behaviour, was the norm.
Unlike previous encounters, the new social worker took a holistic view of the situation, asking questions about mine and my husband’s personal wellbeing, analysing every comment I made, suggesting solutions to Mum's longer term care needs, acknowledging gaps in previous care and the lack of support for me as the primary caregiver. It was such a difference to our previous experience.
She had been surprised that no one had ever told us that due to my mother’s incontinence we should have been referred to the NHS in December 23 for an assessment and had been paying £90 per month for pads.
A few days later, I had a breakdown.
After the worst week of my life, I could no longer cope. Sobbing uncontrollably, I rang our new social worker asking her to just take my mother away.
Within 24hrs, respite had been arranged a local care home, and Mum was gone.
I could breathe for the first time in over a year. But the feeling of relief was also one of guilt. I had let my dad down, promising him that I would look after Mum, I had failed on my promise.
We were already due to go away with friends for a week, so I knew Mum would be looked after, and I could take some time to repair myself.
The social worker had advised that she would visit Mum whilst we were away and made a recommendation on how we should proceed.
The recommendation and decision; Mum should not return home.
Another wave of guilt hit me. I had not been able to support Mum at home and now feeling like I had abandoned her.
But, through the support of our social worker, friends and my husband, I have come to realise I had done all I could, and now it was time for us to have the help we needed.
But then there was the financing to consider.
We didn’t have the funds to pay for the home, our house wasn’t selling, so we needed the council to make decision.
After another couple of weeks, we heard. The council would be funding my Mum's care, and they would not be counting the gift my father gave us as a couple of years ago as deprivation of capital.
This final sense of relief was overwhelming. We were no longer about to lose our home, we now had the support Mum needed, and I could start to be me again.
And what happened with the complaint… well after 40 days we had a response. Did it address the points raised or clarify the financial situation providing a breakdown of costs, of course not. It was only when I rang and spoke to someone directly, that they eventually explained how this was calculated.
Why not have put that on the original letter with the invoice? Or on the financial assessment? Or write it into the complaint response?
But now we had the issue of repayment. Mum's’ savings are all but gone, and with an additional £549 on top now due to fees for respite, this will have to come from a monthly payment plan. A clear explanation 4 months ago would have stopped a lot of stress, many crabby emails, and funds would have been available to re-pay.
Are we at the end of Mum’s journey, no. There are still a few loose ends to tie up, but we are on our way.
We know there are hard days to come, and there is only one inevitable outcome with dementia.
When I visit Mum now, she doesn’t always know who I am, but there is a glimmer of recollection, a familiar face, a smile.
Personal Reflections
This journey has been an emotional rollercoaster and has been filled with a challenging mix of successes and failures. The successes - like the quick initial assessment, the dedicated social worker who looked at the bigger picture, and the eventual funding support - show the potential for social services to provide real, meaningful assistance. On the other hand, the failures - the lack of continuity in care, confusing financial assessments, and inadequate response to changing needs, demonstrate the urgent need for systemic improvements.
We have not reached the end of the that journey and no doubt we will still have challenges to overcome.
And yes, the past 18 months have been hard with days filled with frustration and tears, but there have been more recent days of profound gratitude. I've learned the importance of patience, self-care, and seeking support.
And as a career, you don’t need to suffer alone.
Key Takeaways for Others
For others navigating the labyrinth of social services, there are key lessons to be learned:
Start Early: Don’t wait for a crisis to begin looking for help.
Be Honest: It was only when I fully opened up about my struggles that the help I needed was provided.
Take Care of Yourself: Caregivers must remember their well-being is essential to provide the best care possible.
And a Plea to Social Care Providers:
Simplify Access to Services: Don’t assume people will know how to navigate the maze of services on offer and where to begin. Choice is fine, but people need guidance.
Keep Communication Simple. The full assessment is great as an appendix, but people just need a clear and simple response.
Respond to the Complaint: And not just what you want to write. It shouldn’t take a phone to call to follow up and ask additional questions before someone gives you an answer that you asked for 6 months ago.
Create Opportunities to Give Feedback: The process of accessing services is complex, so create opportunities to obtain feedback, then you will be able to better understand where issues occur, and the difficulty people have. As well as providing opportunities for people to give praise when due.
Conclusion
Navigating social care & care services for a loved one with dementia is challenging, but you're not alone. Sharing my story with you is not to gain sympathy but is to highlight the areas in which I believe we can change services for the better, and to show that there are people out there who do truly care and can help.
One final wish of you all…
Please don’t think of Mum as a woman who is slowly fading away, think of her as I do.
For Mother’s Day earlier in the year we took her for afternoon tea, and to see an Elvis Impersonator. She didn’t know he was an impersonator, and having sipped her tea and eaten her scone, I watched her singing away and clapping along, with the biggest smile on her face.
My last happy memory of the mother I knew and the woman she was.
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