Whether you care for a relative with dementia at home, or visit them in a care home, you need to be mindful of the potential toll on your own physical and mental health. Helpful advice that I dismissed. Don’t make the same mistake.
Carers taking care of ourselves
When I started this blog, I was touched by kind messages from people I hardly knew telling me to take care of myself. During a ‘Contented Dementia’ course we were encouraged to find a new project, something we have wanted to do for a while, something just for us.
I struggled to understand why there was so much emphasis on the carer. After all, it’s not me who is desperately anxious, confused and vulnerable. And the truth is I already indulge myself in yoga, badminton, meditation and regular holidays. I am completely supported by Jack, my very lovely husband who allows me to prattle on endlessly about my concerns for my mother. He often joins me in Porthcawl, South Wales (a car journey of four hours plus) and on outings with mum.
Above all, I’m not the primary carer; my mum is in a care home. Many people live daily with the huge challenge of looking after a relative who needs 24-hour physical and psycho-social support. I don’t face that burden. I just visit my mum. I was almost embarrassed at the idea I might be at risk….
Three serious infections in two years
…And yet, perhaps it is no coincidence that since my mum’s problems started, I have had three serious infections, two of which triggered sepsis, and resulted in emergency hospital admissions. Normally, fit and healthy, my first infection was within a couple of weeks of my mother being admitted to hospital. For me a urinary infection, quickly moved to my kidney, and affected my liver. I was cared for in the same hospital at the same time as my mother, though she was in a locked ward.
My last illness, earlier this year was severe pneumonia which led to pleurisy, and infections of my gall bladder and liver. This time I remained in hospital for 10 days, until I could breathe enough oxygen into my lungs unaided.
Feeling emotional and down
One weekend recently, I found myself feeling flat and weary during a visit with mum. I hadn’t intended to spend five hours with her that day, but I didn’t like to leave as she seemed particularly needy and helpless. That evening I had planned to restart Body Pump (weights class to music) which I have neglected of late. I was looking forward to it, but while I was with mum I started feeling physically tired and a little unwell. I talked myself out of the class, although it was probably the tonic I needed.
This ‘down’ feeling comes from nowhere and sometimes takes a hold of my mood for several days at a time. I know it’s not unusual. Everybody feels blue from time to time. Normally I would be able to pinpoint what is wrong, and gradually work out how to fix whatever is troubling me.
The problem is, when someone you love has dementia you can’t fix it, and it doesn’t get better. You might be able to improve things for a short while, but you can’t address the underlying problem; that your kind and loving mother is living in a nightmare.
The cognitive impairment caused by the disease makes it hard for mum to make sense of everyday things, her insecurities are amplified, her self-esteem is assaulted, and she ends up feeling scared and vulnerable. On top of that she is in a strange place, that because of dementia, never becomes familiar. As she often says to me “I am scared out of my pants”.
Physical and mental health toll
Caring for someone with dementia can have impacts you wouldn’t expect. “Carers of people with dementia have increased risk of developing dementia,” according to dementia care expert, Teepa Snow.
“Compared to non-caregivers, carers for people with dementia visited their GPs 50% more and took up to 86% more prescribed medications,” according to Alzheimer Scotland.
Family caregivers of people with dementia are “often called the invisible second patients”, according to an article in Dialogues, a clinical neuroscience magazine. “The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.”
A recent literature review on the topic concluded, “It appears that the majority of dementia caregivers are sufficiently disturbed to be of concern to the mental health professions.”
Reaction to emotional distress
Without the responsibility of managing mum’s daily needs, I don’t face the 24-hour physical and practical job that some families do. I get to say goodbye at the end of a visit and have the freedom to indulge most of my regular activities. The major impact for me is at an emotional level. I feel guilt and sadness. Guilt because I am haunted by the feeling that she would be better off in her own home, if I was willing to support her. Sadness at a deep and visceral level about her ongoing distress.
I was initially reluctant to connect my illnesses, with the situation my mother is in. Now I am learning about the clear connection between mind and body, I think there is no getting around it. It is likely that my own emotions increased my susceptibility to illness.
So, although I already take really good care of myself and my caring role is minimal, I am now more mindful of my symptoms and moods, and even more dedicated to preserving my physical and mental health. I have learned to seek medical advice early if in any doubt at all. My persistence in getting medical attention (after two wrong diagnoses) during my third illness may well have saved my life. In the UK over a third of the 123,000 people who contract sepsis every year, die from the condition.
Take care of yourself
If your primary concern is your loved one, don’t forget you won’t be much use to them if you become ill. Teepa Snow, suggests you won’t be good company either, “If you’re in survival mode, you are not the kind of person that someone with dementia wants to be around!”
Even if you don’t think you are susceptible to physical or mental health strains it makes sense to be proactive. Alzheimer Scotland has put together a very useful guide for carers called ‘Looking After Yourself’ (PDF). I include the top tips here, though the whole document is well worth a read:
- Exercise: Keep up or take up exercise and outdoor walking, as far as possible. It helps you to stay healthy, and relieve daily stress. You may even be able to do some activities with the person who has dementia. Exercise is also very good for people with dementia, as I highlight in this post about tackling anxiety and depression.
- Sleep: Regular sleep and rest are essential. If you don’t get enough rest it can lead to depression, and affect your health. A leading neuroscientist recently highlighted a link between poor sleep and increased risk of developing dementia.
- Health: Watch out for signs of your own physical or mental distress. Keep an eye out for symptoms that may seem benign at first. Don’t be afraid to get them checked out with the doctor. If you find you’re not sleeping, or constantly feeling down go to your doctor.
- Relax: Try to take time out to do the things that you find relaxing such as getting a massage, doing yoga, or listening to calm music.
- Respite: If you are the primary carer there may be help available. Call one of the dementia helplines for advice (numbers below), and don’t be afraid to ask friends or relatives for help.
Teepa Snow has advice about how to manage those stressful moments when you are with the person you care about, in the first of a great series of short videos for carers. Take “three deep cleansing breaths” when you find yourself becoming fraught or distraught. This is important to address our physiological reactions to pressure. When we start feeling stressed our bodies tense up and our breath becomes shallow. We breathe in, but not out, as we go into survival mode. This stops us getting enough oxygen into our brain, which affects the emotional control centre and the front part of the brain that helps us to make good decisions. This short little exercise that you can do again and again, helps you to take care of yourself, and enables you to take better care of your loved one. Watch the video. When my mother is feeling anxious, I lead her through a version of this exercise too.
Finally, don’t hesitate to call a dementia helpline. These helplines are intended for us carers, as well as people living with dementia. The people at the end of the phone have lots of information at their finger-tips and can refer you to other organisations, as necessary. I have called these helplines several times. Below are the UK ones, and a quick internet search will determine if there is one available in your country.
- UK wide (open every day): 0300 222 11 22
- Scotland (open 24/7): 0808 808 3000
- Wales (open 24/7): 0808 808 2235