The Emotional Rollercoaster: My Mother's Alzheimer's Journey
Background
My experience with my mum’s dementia began subtly, long before any official diagnosis was made. It was a slow encroachment on our lives, with signs that only became obvious in retrospect. The story is deeply personal, rooted in the events that shaped our family from 2007 onwards. What follows is a chronological account of those years, focusing on the emotional, practical, and relational shifts that occurred as her dementia gradually became part of our reality
Jump to the links below:
2009-2010: Adjusting to a ‘New Normal’
2011-2015: A Series of Transitions
SYMPTOMS
Agitation, Loneliness & Strained Relationships
Physical Decline: UTI’s, Falls & Resistance to Care
Frequent Falls & Increasing Care Needs
Major Behavioural & Cognitive Symptoms: Agitation, Accusations & Indecision
CARE & SUPPORT
Care support in the South Asian Community
Funding Care & Family Dynamics
2007-2008: Loss and Trauma
The catalyst for my mum’s decline, I believe, was the series of devastating losses we suffered as a family in a short span. In December 2007, her brother passed away in India. Mum couldn’t attend the funeral because she couldn’t find short-term care for my disabled sister. Less than a month later, on New Year’s Day 2008, my sister passed away. Had mum travelled to India, she wouldn’t have been present for my sister’s passing, which I think would have haunted her. Then, just four months after my sister’s death, my father died. I remember asking mum which loss was the hardest, and she confided that losing her lifelong companion was the most difficult. Our nuclear family was shattered in just four months, and I believe this unresolved trauma marked a turning point in her life and mine.
At the time, I was living and working in Dubai. The easy option would have been to return to London permanently, but I chose not to, knowing I would have resented giving up my independence and life there. Mum understood this, and whilst she encouraged me to stay in Dubai, her comments to friends—urging them to appreciate having their children close—made me feel guilty for years. I did what I could from afar, relying on neighbours and family friends to help her when I couldn’t be there.
Life is about choices, even when they seem limited, and I tried to balance my own life in Dubai with her needs in London. I scheduled my visits around important occasions like her birthday, Eid, and Christmas, knowing she’d otherwise be alone. I recalled how lively our Eid celebrations were when my father and sister were alive, but after their passing, visitors dwindled and eventually stopped altogether. Mum found solace in her faith, telling me often that it was what got her through, but I sensed she suppressed her feelings rather than truly processing her grief.
2009-2010: Adjusting to a 'New Normal'
As family friends’ visits faded, mum’s support network shrank to three families who helped with grocery shopping and occasional companionship. Mum’s isolation weighed on me; I felt a sense of duty and pity, constantly checking on her by phone and, if I couldn’t reach her, through neighbours and friends. Whenever I visited, I would batch cook meals and fill her freezer to ensure she’d have food when I was gone. She managed simple meals herself, but that too became more difficult over time. Thankfully, those remaining friends often brought her food.
Just as I settled into this new routine, mum needed knee replacement surgery—not once, but twice in a few months. I took time off work to be with her during recovery, managing my work responsibilities between London and Dubai. In the autumn of 2009, I began a doctoral programme in the UK, planning my visits to coincide with mum’s needs.
A few months later, she joined me in Dubai. To keep her engaged whilst I was at work, she enrolled in computer lessons at a local college. She seemed happier with an activity to do, rather than sitting alone watching television.
A week later we travelled to India, where mum spent a month with her family, cared for and surrounded by loved ones. She remained independent, capable of personal care, but would keep the bathroom door unlocked in case of a fall. Mum insisted on managing her own medication, refusing pill boxes and questioning prescriptions. At this stage, she remained quite self-sufficient and didn’t really exhibit any signs/symptoms of dementia.
2011-2015: A Series of Transitions
In June 2011, I got married in Cyprus, with mum happily attending the celebrations. Later that year, she suffered a major heart attack and required a triple bypass. The news shook me, and I rushed to London, staying until she was released from hospital. She received a re-enablement care package and support from a distant relative who travelled from overseas to be with her whilst I returned to Dubai to resign from my job. I had no option but to do so; the distance made it impossible to continue working while caring for mum. My husband was incredibly supportive throughout this period, even as newlyweds for which I was grateful.
By 2013, it was clear my husband and I couldn’t remain in Dubai. He was offered a governmental role in northern Sweden, and we relocated there, believing it would make commuting to London easier. The reality proved otherwise, as travel became even more complicated. I completed my doctorate in 2015, continuing my regular visits to mum, but her symptoms of dementia were becoming increasingly apparent, though I didn’t fully understand them at the time.
Looking back, I realise how gradual and insidious the onset of mum’s dementia truly was. The combination of personal loss, physical health issues, and increasing isolation all contributed to the changes in her behaviour and abilities. Through it all, I tried to balance my own life and responsibilities with her growing needs, learning—sometimes painfully—about the nature of dementia and the importance of support, compassion, and self-care
Early Warning Signs
Reflecting on my mother’s journey with dementia, I recognise that her behavioural changes began soon after her heart operation. Arguments over the smallest things became routine, and she grew suspicious of everything and everyone, including me. If I spoke to someone in another room, she would accuse me of plotting against her. These frequent confrontations made my visits to London stressful, and I felt completely isolated, especially as I had lost touch with local friends since leaving London in 2005. At the time, I sensed that something was wrong with mum’s behaviour but was at a loss about what to do or who to approach for help.
Friends and family didn’t truly understand my experience, and to be honest, I was equally confused. I found it impossible to describe what was happening, let alone seek guidance. In hindsight, I realise that arguing with someone who has dementia is futile, but back then, I would push back rather than deflect the conversation, inadvertently making things worse.
Agitation, Loneliness & Strained Relationships
In June 2016, my husband and I returned to London for my graduation. Mum refused to attend, citing concerns about needing the bathroom during the ceremony. After the event, my husband returned to Sweden, and I stayed with mum, only to find her agitation and irrational arguments increasing. For instance, when I showed her my graduation photos, she flatly refused to keep one of the photos, claiming it would clutter the lounge. These unpredictable arguments became a daily occurrence, leaving me constantly on edge and feeling extremely lonely. I often called my husband for emotional support, but there was little he could do from afar.
Physical Decline: UTIs, Falls & Resistance to Care
Mum began suffering frequent urinary tract infections in 2016/2017, which unbeknown to me, led to multiple falls within six months. The council organised a ‘lifeline’ necklace buzzer meant for summoning help, but she rarely wore it saying that she disliked using it. Her hearing aids were similarly neglected, as she found them uncomfortable. On one occasion, after a fall in the bathroom, she spent six hours on the floor, unable to reach help because she had locked the door. Eventually, our neighbour and a relative broke down the door to rescue her. Family urged me to find carers, but mum stubbornly insisted on maintaining her independence and privacy.
When mum visited us in Sweden in March 2017, she had more falls but enjoyed the snowy landscape and socialising with our neighbours. Still, she was determined to return to London and argued she could manage the journey and live alone, despite clear evidence to the contrary. During her stay, we used a baby monitor to ensure her safety—she later interpreted this as us spying on her. These incidents gradually convinced me to seek medical advice, though the path forward was still unclear.
Frequent Falls & Increasing Care Needs
In May 2017, mum had two falls at home in London both whilst I was with her; one major enough to require hospitalisation. The first one, she was unable to get up on her own because of her arthritis, but she refused to call for outside help, insisting I lift her against medical advice. On another occasion, she fell down the stairs and was rushed to the Royal London Hospital. The medical team strongly recommended that mum have carers at home and move her bedroom downstairs, but she declined all support. I tried to emotionally blackmail her and said that I would no longer visit her if she did not listen to the advice of medical professionals. Emotional blackmail didn’t work; she responded, “As you wish. Don’t visit me if you don’t want to!” I felt both guilt and frustration at my inability to help more. She was eventually moved to the local hospital, which she disliked as it was where my sister and father had passed away. Following the move, she called me in the middle of the night, claiming she had been kidnapped. These delusions finally convinced me that something was seriously wrong and prompted me to push for an assessment for dementia while she was still in hospital.
Major Behavioural & Cognitive Symptoms: Agitation, Accusations & Indecision
As her dementia progressed, she sometimes made inflammatory remarks and false accusations various people including family friends, causing them to withdraw from her life. For example, she accused a trusted family friend of stealing money. These accusations were deeply hurtful, but mum had no recollection of making them.
Her behaviour became increasingly erratic. She reprimanded me for buying food when the fridge was empty, insisted there was plenty when there was none, and grew more demanding, calling me home for emergencies that she’d soon forget. She disliked me socialising with others and wanted me to prioritise her needs. Despite this, I made an effort to spend quality time with her, knitting and playing games, which offered moments of connection and nostalgia. I noticed her patience, once her hallmark, was replaced by impatience and urgency. She would insist that tasks be done immediately, even badgering carers to involve relatives for minor household fixes.
These interactions sometimes led mum to confide in personal matters, including financial and burial arrangements, with others rather than me, creating further tension. Her indecision grew more pronounced—she would flip-flop about renewing the lease on her flat, discuss moving to a less accessible location, and ignore the practical implications for her carers and for me. The social worker eventually assessed her and confirmed she was keen to renew the lease, which was a relief. However, safeguarding concerns arose when mum instructed the carer not to inform me about certain visitors, highlighting the complex contradictions between her autonomy and vulnerability.
Reflections & Lessons Learnt
The progression of mum’s dementia manifested in subtle yet profound changes—suspicion, agitation, irrational arguments, physical decline, falls, accusations, impatience, and indecision. Each stage brought its own emotional and practical challenges, not only for her but for me as her primary support. Navigating this journey required patience, compassion, and a willingness to seek help, even when the path was unclear. Looking back, I see how important it is not to argue with someone experiencing dementia, and I recognise the value of trained carers who understand the underlying causes of difficult behaviours. Above all, I’ve learnt that support and self-care are vital—for the person living with dementia, and for those caring for them.
Mum was formally diagnosed with Alzheimer’s dementia in October 2018. The process began in hospital with my request for an assessment. The initial assessment was at home, and I was present for it. I watched as she was asked a series of questions designed to test her cognitive abilities. I distinctly remember how the questions focused on her memory, numeracy, attention and concentration, as well as her language skills.
After that assessment, an MRI scan was arranged, which then led to further tests at the Memory Clinic. It was there that we received the official confirmation that mum had Alzheimer’s Dementia. I remember that moment so vividly—the consultant gave us the news and then walked us to the office of the Alzheimer’s Society Dementia Advisor. Whilst mum was taken away for further tests, the Advisor sat with me and talked things through. Even though I had suspected dementia for some time, hearing the diagnosis left me numb, almost in shock. I immediately asked whether mum would eventually stop recognising me. The Advisor said it was possible, but not yet, as mum was still in the earlier stages. When mum returned, we were given an information pack in both English and Bengali, and I was assured that the Advisor would visit mum from time to time to check on her. She also gave me advice about preparing for the future—covering social, physical, mental and financial matters. We discussed things like council tax exemption, applying for a disabled blue badge, making sure lasting power of attorney was set up for both health and financial decisions, and finding activities that mum could enjoy.
Mum continued to visit the Memory Clinic for her quarterly check-ups, where she was given the medication deemed appropriate. Although there was and still is no cure for Alzheimer’s, the prescribed medication did help slow the progression. She stayed on them until she passed away, but there were several occasions when she wanted to stop taking them altogether, insisting that nothing seemed to be working.
Care Support for Mum
Following mum’s fall and her extended hospital stay in May 2017, I was strongly advised to arrange daily carers to attend to her needs. She finally agreed to have carers. However, she was always particular about how things should be done. Her favourite phrase, “It’s my way or the highway!”—applied to everything; cleaning and cooking, the way tablets were removed from blister packs or milk was placed in the fridge. She would even reprimand me for trivial things like putting the milk carton in the wrong place. I often teased her about her “OCDs,” but her attention to detail was unwavering.
Many activities that my mother enjoyed—long, soothing showers, or a leisurely routine—were not part of the social services care package. When she had previously used hospital carers after surgeries, their visits were strictly timed to forty-five minutes, with everything rushed. Mum hated being hurried and was livid if carers were late, even by five minutes. She was adamant that she did not want carers through social services, considering them “useless” and only interested in watching the clock. She viewed care agencies as profit-driven businesses, so refused any further social services or agency carers. Furthermore, when I spoke to care agencies in London, they admitted they couldn’t meet her exacting requirements. I understood how difficult mum could be, but it raised a broader question: does being “difficult” mean someone will not get the care they need? People living with dementia and similar conditions are often challenging, not by choice, but by the nature of their illness.
I did eventually manage to engage three private carers privately, for approximately eighteen hours a day. I had anticipated that finding appropriate carers would be time-consuming and extremely challenging but found them through my family network and adverts in the hospital. This brought me peace of mind although they were not medically trained nor conversant in English and struggled with mum’s behavioural changes.
Care Support in the South Asian Community
The issue of dementia care within the South Asian community is complex. My parents were practising Muslims, but my father was liberal, believing faith was person. My mother was similar until dementia set in, when she became more observant. Mum wanted carers who understood her language, culture and religion. She taught English to Bangladeshi women, and preferred carers who would converse with her. Whilst the Assamese community is small in the UK, and finding carers who met all her criterion was impossible, mum spoke Bengali, and I found carers from the Bangladeshi community. However, they spoke Sylheti – a dialect of Bengali – rather than ‘pure’ Bengali, which posed its own challenges.
Looking back, I realise that all three carers gave mum the emotional support she needed. They respected her wishes and catered to her needs, though, objectively speaking, much of what they did, amounted to babysitting. This isn’t a criticism of their service, but it highlights a fundamental issue with the care system itself. If you want good carers, they need to be properly trained, especially in basic medical support. The reality is, carers are generally undervalued and poorly paid, which impacts the quality of care. In my experience, many carers especially from the South Asian community see their work as a side hustle rather than a vocation, unless they are truly dedicated. I also noticed that mum’s carers sometimes imposed their religious practices on her. For example, one carer woke mum up from much-needed sleep for prayer, which infuriated me. To their credit, both day and night carers believed that caring for an elderly person was an honour and would earn them “brownie points in heaven.”
The night carer stayed in the same room, helping mum with medication and breakfast and sometimes sending me videos of mum exercising or dancing. The day carers split tasks like cooking, cleaning, personal care, and shopping. I arranged GP and hospital appointments remotely, as the carers lacked confidence in English. I realised there was a balancing act between finding carers who understood mum’s linguistic, cultural and religious needs, and those who could meet her medical requirements.
The additional challenge with acquiring carers in the South Asian community, especially those from conservative background, is that families in general, do not encourage their daughters to stay over at someone’s house. Looking back on my own childhood, I never had sleepovers, so I knew that finding and keeping a night carer would be difficult. I was, however, very fortunate to have found a lovely night carer who was able to stay overnight because her husband was overseas and her brothers approved. Any changes to shifts required family consultation, which added complexity. Over time, mum’s carers became like family primarily because of the relationship they established with mum.
Mum was very clear that she did not want to move into a nursing/old people’s home. We had discussed this previously and agreed that she would have carers to take care of her for as long as possible. However, given that her carers were private and self-funded we realised that changes needed to be made to be able to afford them.
Funding & Family Dynamics
Funding care is a sensitive issue. All of mum’s support was self-funded and managed by me. By early 2019, funds were running out, and we needed to act quickly. Dad had always wanted mum to be comfortable and suggested selling the family home. Mum vacillated about selling but eventually agreed. After much indecision, we found a suitable apartment near her GP and moved in June 2019.
At the same time, my husband needed back surgery in Sweden, so I had to coordinate the move efficiently. The carers were incredibly supportive, helping mum pack and settle into her new flat. Their dedication during this chaotic transition was invaluable, and they made sure mum felt at home. By the time mum moved into the flat, my husband and I had decided to relocate to London to be closer. We began the process of winding up our lives in Sweden, moved into my flat in London rather than with mum and continued to support her locally.
The close bond with carers had its drawbacks, especially with dementia. When personal and professional boundaries blur, misunderstandings can arise. Mum was open about her financial affairs with her carers, which I disagreed with, leading her to trust outsiders. She remained lucid until early 2020 and insisted on managing her own banking, resisting any suggestion of a Lasting Power of Attorney.
Safeguarding & Cultural Nuances
Social services sometimes misunderstand the informal support systems within the South Asian community, where help is often provided by friends and family rather than formal channels. While safeguarding is important, it can also complicate relationships and lead to blocked communication, as I experienced with a young man, a cousin of one of the carers, who helped mum but was later excluded from her funeral. Not everyone knows about council services like the Handy Man Service, which could have helped.
As mum’s health declined, her communication with the bank triggered concern, prompting social services involvement. Despite my repeated instructions that the young man should not visit without my presence, he did so, and the carer ignored my instructions. This is reflective of how informal support can sometimes conflict with safeguarding protocols.
COVID & Dementia
The onset of COVID added another layer of complexity. Lockdown began on 23rd March 2020, making support and visits even harder. I provided carers with protective equipment and letters of consent to travel. The night carer stayed round-the-clock, and if groceries couldn’t be delivered, she shopped in person. These practical adjustments were necessary to keep mum safe and cared for during the pandemic.
Unfortunately, on April 7th, 2020, mum contracted COVID and after much deliberation we decided to call an ambulance and have her taken to the local hospital. She was adamant there was nothing wrong with her, despite having a high fever, swollen face and the inability to get out of bed. After two weeks in hospital, she was discharged still COVID positive but sent to a convalescence home where she passed away the very next morning.
Whilst it was sad that she passed away with none of us around her, it was the beginning of COVID and I believe that had she lived, care support would have been difficult for her. At the time of her passing she was on the cusp of middle stage and advanced stage dementia. She would have required professional carers to take care of her. The existing carers probably would have given up working with her for fear of COVID and with the lockdown in the UK lasting beyond a year, it would have been increasingly difficult to find professional carers who were medically trained.
Final Thoughts
Reflecting on this journey, I realise how vital it is to have culturally sensitive, emotionally supportive, and well-trained carers for those living with dementia. Funding challenges, family dynamics, and cultural expectations all play significant roles in care decisions. The experience has shown me the importance of balancing professional boundaries with personal connection, and the need for open communication and planning, especially regarding financial and medical matters. Above all, I have learnt that caring for a loved one with dementia requires patience, compassion, and resilience, and that support for carers themselves is just as essential as support for those they care for.
Since her passing, I find great comfort in visiting the National COVID Memorial and painting a heart with a message to signify yet another year without her.