Launch Post - Is there anybody out there?

Looking back on our journey, I realise that despite my mother’s diagnosis being in September/October 2018, she had been suffering from the disease at least for a few years prior to the diagnosis.  I noticed some of her behavioural changes from 2013 onwards, about 2 years after I got married.  Her Dementia Advisor was of the same opinion and believed that she had been living with the symptoms for quite a while. Whilst we experienced the journey together, there were elements of the journey that we experienced alone.  My loneliness came from the inability to share it with another nuclear family member.  I had no sibling to share the experience with.  Talking to a friend or even my husband was not the same as talking to someone who felt responsible for her.  So, I was accountable for all the decision making that took place and I constantly doubted myself.  How could I not?  When dad was alive, we shared decision making as a family and once he passed away, it was mum and I making all the decisions jointly.  When mum was lucid, I would doubt whether she had dementia and then she would slip into a fog and I would be back to square one. The blank look in her eyes; that empty look that the lights were on, but nobody was home still haunts me today. 

Whilst I would question every decision and think about what she would want there were some situations which required my input and decision.  One example was when, if at all, she should be moved into a residential facility.  She was adamant that she would not move into a care home nor hospital.  This was not something I wanted to do and fortunately, was not put in a position where I had to make that decision.  I did however, have to view some care homes in the event that the existing carers were unable to continue taking care of mum.  I found this to be soul destroying.  I selected ones that were close to where I lived so that I could visit her if that were to become an eventuality.  I found one that I liked and would have considered for myself, and they interviewed mum a few weeks before the COVID pandemic became a reality.  The primary bone of contention was that mum wanted to keep her carers with her and care homes have their own staff, so that was not a possibility.  However, they kept her name on the waiting list. 

One of major issues I faced was how to deal with mum when she was being indecisive about important matters.  The family home needed to be sold to be able to fund the care support and required both my signature and hers.  She was keen to sell the house but there were days when she would become indecisive and say that she wasn’t going to sell, and then change her mind the next day.  I found these moments extremely difficult primarily as I knew the dire situation she was in financially.  No house sale meant no care support and at this point in time she had about 18 hours a day of care support.  I was still living in Sweden and moving back to look after her was not an option that I had considered especially in light of the fact that my husband was due for back surgery in Sweden.  Mum eventually agreed and signed the contract and we were able to proceed with the house sale.  This was probably one of the most stressful times in my life and I got through it because of my husband and a few close friends. 

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Launch Post - Is there anybody out there?

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‘Is there anybody out there?’ is a personal reflection of the journey of my mother’s Alzheimer’s Dementia and my lived experience with her. It recounts the total isolation we both felt (individually) during this tumultuous journey. I was not living with her for most of the time as I was abroad but moved back to London six months before she passed and managed her care both locally and from abroad. When I returned to London there were days when I would sit in my car, having just visited her, and not know whether to laugh or cry just asking myself “is there anybody out there who understands how I’m feeling, or more importantly, does anybody care?” Hence the title ‘Is there anybody out there?’

Alzheimer’s Dementia is one of those diseases that most people think/believe will not happen to them or their family members. It’s like any disease that is degenerative or fatal. I believe that we all think that it’s the disease that affects others but not me, or any of my loved ones. Yet the statistics say otherwise!!

According to the Alzheimer's Society website, “1 in 3 people born in the UK today will be diagnosed with dementia in their lifetime”

I was oblivious to the issues surrounding Alzheimer’s Dementia and whenever I heard of anyone suffering from it, my internal reaction would be of ‘pity.’ I remember as a child of 8/9, that our next-door neighbour’s mother would walk the streets with her little black handbag, a blue coat and green wellies mumbling to herself, and this was in the middle of summer. Her son mentioned to my parents that she had dementia. This was the only exposure I had to the disease some 50 years ago. It was only when mum was diagnosed, that it hit me literally in the face to the point where I couldn’t ignore it, and it dawned on me that I was in for a long and painful journey.

In terms of mum, I have often reflected on how she might have felt during the years that she lived with dementia. I’m not talking about her moods which would change daily, but how she really felt physically, emotionally, and mentally. I know that there were moments in the last 6 months of her life that the carers would call me and say that she would sit in her chair and cry. They would ask her what was wrong, and she would just say that nothing was wrong. Whenever I asked her, she would snap and say, “can’t I cry, do you have to take that away from me too?” I feel sad when I think of those moments now. Mum had always been an independent woman, worked, looked after us as a family and had her hobbies of cooking/baking, gardening, sewing and knitting. I even remember her single-handedly painting and decorating our bedrooms when I was in my late teens.

“can’t I cry, do you have to take that away from me too?”

All my life I had seen her as that independent woman and now she needed help with bathing, getting dressed and at times, eating. I realise now that she was probably mourning her independence, but I didn’t realise at the time. She was an extremely private person, so I’m not sure if she discussed her feelings with anyone. Her Dementia Advisor would visit her and I know she would open up about how she was feeling. She would communicate about her physical aches and pains and how she was suffering emotionally.

There are so many situations that in hindsight I would have managed differently. I didn’t have the awareness then. It’s taken my mother’s death for me to become more aware, have a greater understanding of the disease and become more compassionate in the process.

I had thought of writing our story soon after my mother passed away in April 2020, but it was too raw then, and I was ‘all over the place’ as they say; I just didn’t have the strength. Now, after giving myself almost 4 years, following a lot of reflection I’ve documented it and found the experience to be extremely cathartic. I still have moments that make me shudder; when I think of specific incidents, but in time, I’m sure that too will pass. I hope that there may be someone out there who can resonate with some of the issues that I bring to light in my story. It is based on my journey alone and those of my husband and does not reflect opinions or feelings of others nor is it based on any academic data.

If there is anybody out there who can resonate with this, please reach out and share your experience on blog@dementiasphere.com

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