Rose Polkey, a dementia coach and counsellor, talks about the kind of support families, caregivers and those living with dementia need. She has a wealth of information on best practice and the encouraging emerging evidence on dementia management.
I have personal as well as professional experience of what it really means to care for a loved one with dementia. My husband was diagnosed with frontal lobe dementia at age 60. This has had a major impact on our lives causing me to have to find new ways to think, live and act in order for us to both gets our needs met.
I am an optimist who believes that there is always a solution to a problem and so I have combined the many years I’ve spent working as a coach and personal development facilitator to help others find solutions for the unique problems that dementia brings. This includes finding ways to function as a carer or support carer to a loved one who is living with dementia while also continuing to develop as my own person, despite the circumstances.
When someone is diagnosed with dementia, it can be a very lonely time which can leave spouses, carers and families burnt out, sad and without hope. What advice do you have for those who are in need of support?
Everyone has a unique situation. Everyone has a unique need. And everyone one has a unique tipping point.
It’s always best to work to identify what those unique and personal priorities are so as to avoid diluting all these aspects and creating a muddle of problems. Creating as much clarity as possible is one of the best ways to avoid burn out. Trying to cope and trying to be ‘fine’ is exhausting. If you know how to work through your own unique priorities you know where to put most of your attention. This helps to reduce stress and burnout.
Staying in the moment means creating a daily reminder to focus on things you can do something about. I believe very strongly in action. Every day you must know what you are going to focus on and every day you must be able tick something off that will give you a sense of progress. Believe it or not you can do this even while caring for your loved one who may require professional as well as personal support.
Give yourself some time each day to feel the sadness and the loss. Don’t try to avoid it – that will create more pressure. Trying to avoid the sadness is like trying to keep a ball under water. Make it a special time of the day. For example you can write about it or cry about it. Music is helpful in releasing a good sob after which it’s easier to pick yourself up and go on with the day. The shower is another good place to allow the water to soothe you as you release what it is that you need to release as you come terms with your new reality. Be honest with yourself.
Because this is such a difficult time you will have to have a checklist to be able to tick things off at the end of the day so that you keep getting a sense of progress. As you practice this habit you will be able to develop hope of a new kind about new kinds of things. Unless you do these sorts of things you will spend your days merely putting out fires which is a really easy way to burn yourself out and to lose hope.
There are many spouses and children who are in denial about their loved ones possibly having dementia or may be facing guilt for seeking care. How do you help families realise that it’s okay?
I have learnt that denial is just another form of acceptance. Some of us just aren’t able to face or voice what we know to be true so we create a new story to suit what we can cope with. This new story takes time to develop. Once it reaches a certain point it gives us the confidence to make decisions based on our own version of what it happening to our loved one.
As long as we are attending to the needs of the person living with dementia we can find way to frame things in a way that works for us. It’s not always necessary to force someone to speak the language of dementia to be able to help them find a solution to their problems. In my experience there are many ways that people find to frame a diagnosis of dementia in a loved one. Some are more comfortable with terms like mental illness or nervous breakdown. If that is the starting point used to approach solutions, then in time, once a level of security is established the person may finally be able to say the word dementia.
The important thing is that the person with dementia is made safe. This takes a lot of support and it is so important to find people who are able to help you with the decisions you need to make. There is a difference between sentimentality and acceptance. We all reach this point in our own way and in our own time.
What are some of the easiest coping strategies families can practice when they feel that everything is just getting too much for them to handle?
The first things to say is to forget the idea of ‘me time’. Trying to find me time in the conventional sense often leads to frustration and even resentment. Working out what your own needs are and how to achieve them will boost your confidence and give you something to look forward to the next time you get a break.
This “me time” may be as simple as a cup of tea in a beautiful space listening to the birds and allowing someone else to serve you!!
Remember that having someone help you make some of the very hardest decisions that you might ever need to make does lighten the load and gives you the strength to decide what the best solution is for you and your loved one. You can get through this time and you do not have to travel this road alone. Help is at hand. Don’t ever be afraid to say you have reached your tipping point. All of us who are thrust into the world of supporting a loved one with dementia arrive at this point eventually. We’re all in this together.