Caring for My Mum: One Daughter's Experience of Alzheimer's

As part of Carers Week, Jo-Ann shares her experience of caring for her mum following an Alzheimer's diagnosis, and the lessons she learned along the way.

This Carers Week, we're sharing the voices of family carers in our community.

Jo-Ann cared for her mum following her Alzheimer's diagnosis in 2021. In this guest blog, she reflects on the challenges, emotions, and lessons learned throughout her caring journey and shares advice for others supporting a loved one with dementia. The views expressed in this blog are Jo-Ann's own and are shared with her permission.

Jo-Ann and her Mum, who was a member of the Moss-side Group at TDS

Guest blog by Jo-Ann

My mum was diagnosed with Alzheimer’s in September 2021. We had lived in the same house for a significant period before this. We had always been close, and this arrangement worked well for us.

My mum had retired several years before her diagnosis and was able to commit her time during the week to a charity that she had helped to set up that worked to reduce gun and knife crime. She was passionate about her full-time community role, a role that a personal experience of loss through gun crime had brought her to.

Nine months before diagnosis, my mum had contracted COVID-19 and also needed a pacemaker fitting due to a very low heart rate that seemed to have come out of the blue. Following this, our family observed a quick deterioration in her brain functioning and mental health. She was no longer confident in doing the weekly shop or driving, something that I had observed my mum confidently do for over 40 years. Other than this, my mum seemed to retain most of her independence, but slowly her voluntary work became less over time and tasks she normally took responsibility for gradually fell off. My mum fought to hold onto any element of her independence that she could, and in the early months following diagnosis, she would go shopping at Asda more or less daily just so that she was doing something for herself. She was still able to use her bank card, but this gradually became more difficult for her, as she began to forget her PIN number, how to use the self-serve tills or would not be able to find her card.

Her card, keys and bag would often get lost. Although educated at university level, my mum’s reading skills were significantly affected by Alzheimer’s and even her hearing and vision. This must have been incredibly difficult to adjust to, and the impact that it was having on what she could do for herself.

As we lived together, the bulk of the care naturally fell to me, and I would support my mum to fill those gaps where her skills had begun to diminish. As my mum’s illness got worse, she became increasingly reliant on my presence and would constantly ask where I was and would want to be where I was. I continued working full-time, and as time went on, I needed to arrange support with personal care through a care agency. I also arranged daycare groups/activities through Together Dementia Support. My mum resisted both for a long time, and it was often a battle just to get her out of the door and into the transport. It was, however, important that I was able to retain some normality to my own life, but also that my mum was able to have time out of the house and to have opportunities to socialise.

She had always been a sociable person and loved meeting and talking to new people. She loved conversation and human interaction; she had thrived on this. I wanted this to continue for her as much as possible.

I was also very fortunate to have a supportive family who committed to supporting my mum’s care every week. They remained dedicated to days and nights each week, where I knew that I could take time out from the house and caring for my mum. I was slowly beginning to feel tied to the house. A simple trip to Asda 5 minutes down the road needed planning;  It was no longer a spontaneous act.

My mum had always been mobile and active, and this continued for about 2 years following her diagnosis. During these times, keeping her safe while balancing her need to have some independence and some control over her life was another challenging task. The external and internal doors had to be kept locked to keep her safe, and trips outside had to be supervised where possible. This wasn’t easy to maintain or manage, particularly when my mum was adamant that she wanted to do something. The use of visible trackers that could be worn around the neck was of no use in our case, as my mum would have just taken them off.

My brother found a discreet tracker that could be sewn into the lining of her coat, and this helped us to manage her independence more safely. We had to learn by trial and error what worked for my mum and for us caring for her.

 I worked from home, which supported me being available to my mum but also meant opportunities to leave home became less as my mum’s levels of independence decreased and her need for supervision and support increased. Having a ‘Family/Friends Care Rota’ was a lifeline, and it is something that I feel, where possible, every carer should have. Care should never be left to one person. Caring for someone with Alzheimer’s is hard work and can take a lot out of you physically and emotionally. Therefore, self-care is essential, and it is important that each carer develops a well-being plan that helps them to take time out and to look after themselves. It is so easy as a carer to put yourself, including your health needs, last.

I gradually gained a lot of weight, and my health was affected negatively as my well-being activities became less, as my caring role increased; I had less time to dedicate to walking, which I had previously done to stay healthy and maintain my weight. I would usually go for early morning walks or an evening walk, but it came to the point where I  couldn’t leave my mum alone in the mornings at home or in the evenings. She would become confused and anxious.

Following finishing a day’s work,  I just didn’t have the energy to do any self-care. I had worked all day in a demanding job, cooked the evening meal, and ensured that my mum had something to eat and drink before bed. If my mum was not being cooperative, I would also sometimes need to get involved in my mum’s evening bedtime routine to support the carer. There was no energy for exercise, and most evenings I just wanted to relax a little before going to sleep. Even on the days that the family and friend rota kicked in, I just didn’t have the energy to do any exercise and just always felt exhausted.

The weight began to pile on, and my health was affected (although this did not become apparent until after my mum’s death). I didn’t have the energy to look after myself. My priority was making sure my mum was looked after and safe. It is no surprise that the Caring About Equality report 2025 reported that nearly half of UK adults with caring responsibilities reported that their health had been impacted since caring and reported new or worsening conditions.

Having a well-being plan is essential not only to maintain physical health but also mental health. I loved my mum dearly; she had been the best mum, loving, caring and always supportive. With our best interests at heart. However, the Alzheimer's did something that I had never imagined would happen; it changed her personality, and it seemed to exacerbate the more challenging aspects of her personality. My mum had always loved a good debate, but that changed to her being argumentative over the littlest of things.

In the mid stages of her illness, the accusations came thick and fast; I was accused of breaking into her bedroom during the night, stealing her money and moving or taking things. This was one of the things that I found most difficult. In a sense, my mother and I had very similar personalities in that we liked a good debate and didn’t like to back down and when under stress, this aspect of my personality really came to the forefront. It was so easy to get myself stressed and in a battle with my mum, trying to prove my innocence or how unrealistic her thoughts were. I attended a course run by Together Dementia Support to try and understand more about dementia and what this could mean for my mum and us as a family, and the Empowered Conversations training run by  Age UK Salford, which was useful and gave lots of insight and ideas on how to interact with and have more positive and meaningful conversations with someone with dementia.

Learning how to regulate and manage my emotions in times of stress was another big challenge for me, and I did not always achieve being able to have those empowered conversations I had learnt about. It is really difficult, if not impossible, to respond to stressful situations positively if you are unable to self-regulate when emotions and stress are high. Understanding how to respond to your loved ones positively and effectively can be achieved through attending training/courses, etc. However, being able to put your learning into practice when you're in a stressful and challenging environment is not easy and not always achievable. So I had to be kind to myself and use self-reflection to help me to think about what I could do differently the next time.

In 2024, my mum’s self-care skills reduced quickly and significantly, and she needed higher levels of support to manage her care. We arranged an increased level of care to support her with these tasks. It was very difficult to see the decline. Things would stabilise for a period of time, but then her capacity would dip again, stabilise and dip.

This was the pattern that was difficult to observe, as each time there was something else that she could no longer do for herself. By the end of 2024, my mum had several visits to Accident and Emergency due to water infections, dehydration and reduced mobility. Eventually, she was admitted to the hospital following nearly a week of being unable to get out of bed. She deteriorated quickly in the hospital and was in the hospital for about 2 weeks before she was discharged. I would visit every day, and family members and friends ensured that she always had someone with her during visiting hours or longer, depending on how flexible the ward was. My mum’s stay in hospital opened our eyes to the challenges of the NHS, but also to the care that people with dementia receive in hospital. My mum had three ward moves in the 2 weeks she was in hospital, and each ward had different rules. One ward did not have any fixed rules around visiting, and we could visit anytime, which was really reassuring for my mum, who was already confused being in a strange place and having unfamiliar people around her. The flexibility that ward offered meant that my mum was not anxious and was more settled being surrounded by people she knew and could help attend to her needs. The other two wards were not as flexible and seemed to have no understanding of the impact that being in the hospital would have on patients with dementia.

Although my mum was in hospital I worried more about her as I knew she was confused and anxious about being there, and I wasn’t convinced that the care she was receiving was good enough. The NHS is stretched, and they don’t have the time that families do to encourage patients to eat and drink or even to feed them their meals. The lack of flexibility on the other two wards just didn’t make sense because families are usually there to support, not make life more difficult for staff.

Although the physical role of caring for my mum had reduced for me whilst she was in hospital, the emotional impact was probably just as impactful. I worried that she remained in a state of high anxiety and confusion for those long periods of time that we could not visit and be with her.

My mum passed away peacefully at home, 2 weeks after being discharged from hospital. She had been very ill, but keeping her at home was felt to be the best option for her and for us as a family because being in hospital has been so difficult for her.

My mum left a wonderful and powerful legacy behind, and it was reassuring to us as a family that she had lived a good and full life and had given so much to her community and family. Writing a little about my story of caring for my mum has been somewhat therapeutic, and I am thankful for being given this opportunity. For all those reading this who are caring for a loved one with dementia, particularly those who are just starting their journey, I would like to give the following tips.

Advice/Tips:

1.      Try to accept your loved one for who they have become; it can be difficult to let go of the person that they were before their diagnosis. It can also be hard for our loved one to accept their diagnosis and what they have lost. Try to help them find a new lease of life through social groups and activities.

2.      Some things do not have to become a battle; choose your battles. Easier said than done, but no matter how willful behaviour may seem, your loved one has very little control over their behaviour. Try to use distraction or change the subject when they become fixated on something.

3.      Caring for a loved one with Alzheimer’s/Dementia can be a very emotional and physically draining task. Your well-being is key. Look after yourself and ensure you have time away just for you and to do something for you.

4.      Accept support! If you are emotionally and physically drained, you cannot give your best, and you risk impacting your own health. We have all probably heard of carer burnout: “You must put on your own Oxygen mask before assisting other/ you cannot pour from an empty cup.”  Being able to ask for support is a strength, not a weakness!

5.      Try different approaches, adaptations, and support aids until you find what works for your loved one and yourself.

6.      Help your loved one to maintain a level of control and independence where it is safe to do so. They are likely to get tired of being told what to do, so give them some autonomy and control back. Instead of saying “you can't go for a walk by yourself, it’s not safe,” say “I think I need some fresh air as well. Can I come for a walk with you? “ You might only need a 5-minute walk to calm them down and get them back home safely.

7.      Caring for a loved one with Dementia/Alzheimer’s is a challenge, and emotions will be up and down, and you won’t always respond “the textbook way.” Remember, be kind to yourself. Be open to reflecting when emotions are less high and think about a strategy to respond differently next time.

8.      Try to learn as much as you can about your loved one’s diagnosis, how this will impact them and what you can do to be the best carer you can be. Take advantage of courses and training on offer.

The above tips and advice have been given with the benefit of hindsight and learning. I never fully achieved all of these things whilst caring for my mum. They are things to strive for and not necessarily to consistently achieve.