Isolation amongst those caring for or grieving for a loved one is one of the saddest aspects of being a carer. Feeling that you are without support, help and guidance, trapped within an environment that has shrunk down to just your immediate living space, losing social interaction, and in some cases being ostracised through stigma and lack of understanding, can bring people to the brink of despair, and lead to problems ranging from depression to a dependency on alcohol or even contemplating suicide.
When caring for someone with dementia, you are stuck on an emotional rollercoaster which for almost everyone who has ever had a loved one with dementia means grieving for the person you feel you are losing in front of you, and then grieving again when they pass away. Feelings of loss both during the dementia journey and when it ends are major factors in isolating carers and impacting upon their long-term health and wellbeing.
Life after caring is a very strange mixture of feelings. The natural grieving process is individual to each person, but common feelings can include a loss of purpose, a craving for the routine you had (however exhausting it was) and a need within you to care that is no longer fulfilled. If you are of working age, returning to employment can see you coming face-to-face with colleagues who have no concept of what you have been through, and if you are retired, the days can seem long and lonely without the structure that came with caring.
Family members, friends, neighbours or even pets can help to fill the void, whilst for others being proactive and seeking out new hobbies, activities or volunteering for a favourite charity can be very beneficial. For me, immersing myself in my work and enjoying an amazingly happy new relationship has been my salvation. That does not mean that I don’t miss my dad every day because I do, nor does it stop me wishing that we could just sit together and enjoy a cup of tea whilst listening to his favourite music and wordlessly sharing precious time in each other’s lives. My grieving process is still relatively new (not yet five months old), but it has taught me that if you do not fill your time with things that occupy you and make you happy, you will have lost more than your loved one, your life will go too.
I have seen the struggles others have had in my position, and whilst I would never pretend that there is a perfect solution to coping with the isolation caring for and grieving for a loved one brings, if you do not fight the isolation it can be very overwhelming. Often, however, it can be difficult for carers to find an outlet for themselves and their emotions. The common advice is to take a break, but of course in the true switching-off-from-everything sense, you can never really have a break. Even when you are no longer caring, your thoughts and memories of your loved one remain very vivid, and your dedication to them does not automatically end; you cannot just ‘switch off’ from caring.
People who became isolated during their time as a carer are at a very real danger of continuing in that vein as they grieve if they do not have proper support and help. As a society we have still not found the solution to combatting isolation, in fact with so many of us leading such a busy existence, people whose lives exist solely behind closed doors are often forgotten about. It is well known that carers are not supported properly when they are caring, so it is no great surprise that for many this continues after their caring role ends. So many lives fade to a pale imitation of what they once were through isolation, and it is a damming indictment on the UK that so many feel cut off, ignored, taken for granted and abandoned.
Dementia can feel like your greatest enemy, but when it is gone, the person you care for is gone too. In my case, I would still rather have my father, dementia and all it brings, than be living without him. Many assume that it is a ‘relief’ when someone with dementia has passed away, but that could not be further from the truth. Like many all-consuming forces in your life, you struggle to live with it and without it.
For anyone currently battling isolation either as a present or past carer, I hope relief comes from knowing that so many others are going through the same feelings, emotions and difficulties. However isolated you feel, you are never alone; someone else has trodden your path, is doing so currently, or sadly will do in the future. When you are giving, or have given, so much of yourself to someone, it can be hard to see beyond that, but I know that in my case my father would want so much more for me than an isolated existence, and I am sure that whoever you are caring for or have cared for would feel likewise.
Until next time…