Caring for others, Self-care, support, dementia, information
It was my mum's birthday not too long ago, we always remember the day and talk about how was she as a person, she adored my daughter and us. I am thinking about her a lot recently, about how was her last few years with us, how her caring responsibility of my Nana changed her life and affected our lives as well. She was only able to visit us in the UK once, she couldn't leave my Nana alone, and there weren't any other options to give her a break, well at least this is what she said to us.
My Nana was suffering from dementia in her later life and after a while, she had to move in with my mum because she forgot to eat and regularly got lost when she went for a walk. I remember we were driving with my dad and saw an old lady walking near a very busy road, wearing a long turquoise mackintosh coat, very similar to what she was usually wearing. We followed her and it was Nana. It was years before she needed constant support, but the early signs of dementia were there.
So moving in... It must have been an interesting and challenging time for both of them for my mum and for my Nana as well, both incredibly stubborn and independent women, adjusting to living with your mother/daughter again. Nana unfortunately often didn't recognise who you were, due to the illness, she had some aggressive verbal outburst which is normal with people suffering from dementia. But when you have to live with it, completely different from how she was before; fantastic, calm, and gentle soul, the change was often difficult to stomach. They started to live together, which was working for a while, especially while my Nana was more or less aware of what is going on around her, my mum was able to go out in the morning to the shop. Then it changed when she couldn't be felt alone anymore, even for a bit. This is when my mum's life became isolated.
Looking back, other than receiving the medications to keep my Nana comfortable, there weren't enough support mechanism or information given on how to care for individuals with dementia. The GP did everything she could do to help with Nana's anxiety, keep her blood pressure normal, but the lack of other support and education around caring and dementia was completely missing which would have made her life and my mum's life a lot more normal. This is probably one of the reasons why the last few years of my mum's life changed dramatically and to a large degree become isolated from others. She felt that it is her sole responsibility to care for her mum, she wasn't very open to the idea of a residential care home, until the very last minutes. She put this enormous pressure on her to care solely for my Nana. A week before my mum passed away, she finally agreed to find a placement for Nana in a residential care home, but this is only because she knew she was unwell.
I truly admire her for the care she provided to my Nana, but it wasn't always like this. For a long time, I felt let down by my mum, her choice to choose my Nana over my daughter and me. Writing these lines, it seems such a silly thing now, of course for her, it must have been the hardest decision to make. It will be 5 years very soon since my mum passed away. It took me at least 3 years to come to terms with her decision to put everything on hold and look after her mum, meaning that her children and granddaughter were deprived of the valuable time with her, that she was deprived of all the love we could give her. We used to be on Skype for hours every day, she didn't miss the major things, we often had dinner together, but it wasn't the same as holding someone close to you, popping in for a coffee, ranting about why life is so hard. Very similar now in the pandemic as well when we are unable to hold our loved ones close to us, but we can still make memories virtually while we get back to some sort of normality.
5 years and lots of reflection and self-work, self-coaching later, now I understand the possible reasons for her choice. Some come from the cultural background, the way we are brought up, probably there was an element of loneliness in my mum's days following my dad's death, she wanted someone with her to share love and company. If I want to think about the situation very logically, the choice would be easy; my children are fine, working hard, stable jobs and homes, independent and happy, living in 2 different countries. I can spend so much more time with them later. Whereas my mother needs my help now, she gave so much love and helped me over the years and now this is my time to pay back the kindness.
There is nothing wrong with the logic, but there is a couple of very important elements which were missing in her equation; while she was caring, she wasn't self-caring, and also, she didn't know what was around the corner and how sudden her life was ended by a nasty illness. We really don't know what is around the corner.
Her caring responsibilities consumed her, everything was put on hold and the quality of life was a lot less than what it could have been, both in physical and mental regards. Looking back, if I could go back in time and give her advice, try to convince her... oh wow...about what I know now about dementia, caring, I could help so much more. At the time, we have done everything we could from thousands of miles away.
My advice for her would be;
Caring is hard work, a 24/7 job. Stress will be part of your days, you need to make sure you know how to build your resilience. If you feel, you need to speak with the GP about stress, depression, it is ok to do so! It is not a weakness. If you are not careful, the stress of the job will make you ill, you need to look after your wellbeing.
You just don't know what is around the corner, you can't put your life completely on hold, just because you are a carer. You need to ensure that you are looking after yourself, your physical and mental wellbeing.
You are going to go through emotions in the caring journey, and it is ok to feel whatever you will feel. It is ok and normal to experience these emotions.
Ask for help when it gets too much, it is okay to say, I need help.
Plan the care, have your resources in order so you know what is out there which might help you when you need support. You might think of a staged approach, what will I need when things progress to the next stage of care. This can reduce anxiety and make you feel more in control.
Dementia can be a challenging experience for both parties, the behaviour changes will push you to the limits, but you will need to try to understand what is behind those changes. Remain resilient.
Stay calm, don't argue, if you need to, walk away for 5 min.
After the move, the new environment Nana was living in, she knew the house a long time, but she forgot where she was, probably she was really frustrated and confused as well. Try to put yourself in the shoes of the person, they might be confused and frightened.
Monitor the behaviour, to see if there is a pattern when he/she is behaving in an unusual way.
Are there any reasons behind the behaviour which can be medicated, like an infection or pain?
The need for gentle exercise can be a game-changer, can help with behaviour outbursts.
In the UK, there are so many support mechanisms in place, advice sites, forums, helplines, counselling to help you with caring. GPs are also able to help and support you and give information.
Here are some useful links which might be helpful;
Find a local dementia service: https://www.nhs.uk/service-search/other-services/Dementia/LocationSearch/286
Admiral Nurse Dementia Helpline: https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Telephone helplines (including Age UK): https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/helplines-and-forums/
Carers UK forums: https://www.carersuk.org/forum
Dementia Talking Point: https://forum.alzheimers.org.uk/?_ga=2.66871848.726905145.1514897910-401051243.1475677533
NHS Coping with Dementia: https://www.nhs.uk/conditions/dementia/behaviour/
5 self-care tips for carers: https://www.stchristophers.org.uk/resource/5-self-care-tips-for-carers/#:~:text=5%20self-care%20tips%20for%20carers%201%20Feel%20It%2C,in%20your%20caring%20role.%20...%20More%20items...%20
This blog entry is mainly focusing on caring responsibilities for individuals with dementia, but of course, there are lots of other reasons for caring which I have not covered. The reason I went with this topic as I had experience in it.
Caring jobs need to be recognised, this work is a hard one which requires a lot of time, dedication, resilience, physical and emotional stamina. If you know anyone around you who is a carer, please make sure you help, offer help if nothing else or point them in the direction of information and support. Carers often don't ask for help for many reasons.
I dedicate this blog to all carers, no matter who you are caring for, I think you are all doing a fantastic job. Just remember one thing, self-care is essential to be able to care.
Photo reference in order of appearance on the page: Photo by Matej, Cottonbro, and Matthias Zomer from Pexels
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