The loneliness of the long-term (unpaid) carer.
Caring for someone with a terminal illness, by its very nature can be a lonely role for any carer to undertake. As the individual deteriorates, and the care required increases, so does the loneliness. The ‘together’ opportunities and activities that were possible in the early stages of the illness, like the cared for, slowly but inexorably slip away, until all that is left is ‘caring’. Often 24 hours a day. Possibly with some external support, often not. There is no longer any sense of ‘the two of us’.
Georgina was diagnosed with early on-set Alzheimer’s in 2012 at the age of 63, though the signs were there a couple of years previously. Since then her condition has gone through the usual phases of deterioration to what is now advanced late stage Alzheimer’s. In simple terms, this means she requires everything doing for her. She has no cognitive functionality to undertake or understand the everyday tasks you and I take for granted. She cannot walk or talk and requires support to stand to be moved anywhere. She is doubly incontinent, requires feeding and hydrating. She has to be showered and dressed with the assistance of paid carers. She now requires all aspects of her care provided for her 24 hours of every day.
For me the loneliness comes under four headings;
Mental loneliness can best be described as the need to be constantly making decisions concerning Georgina’s well-being, without the reassurance that what I am doing is the best for her long term care. That is in addition to all the other every day decisions that we all need to consider. There is also the loss of social interaction, of being involved outside of the relationship. The self isolation required for some during the pandemic lockdowns has shown many people what long term carers have to live with day in and out. For many unpaid carers it is not isolation, it is abandonment.
Physical loneliness includes the increasing need over time, to take responsibility for everything physical, that previously was shared. Everything includes the more mundane activities such as the weekly food shop, to changing the bedding (at least we no longer argue over the best way to put the duvet cover on). Longer term, as the ability to ‘help’ diminishes, personal care becomes more of a responsibility, and without additional support can become a very lonely task.
Emotional loneliness over the longer term is probably the hardest to come to terms with. It is the one that creeps up on you without thinking about it. Remembering when you used to hold hands, because you could. The spontaneous hug – because you can. The reassuring smile, when you needed it. The words of encouragement when in doubt. That ‘just being there’. All gone, or at best, one sided. The lump in the throat is always there. The tears are never far away, but always in private.
Financial loneliness is the one that is constantly at the back of the mind. As the condition worsens, and the financial cost of support increases, the income to provide it doesn’t (most unpaid carers are pensioners on a fixed income). Taking financial decisions for two, on your own keeps many carers awake at night. Every potential financial decision also impacts on the mental, physical and emotional loneliness of the long term carer.
So, long term loneliness, is it worth it. There is one phrase that justifies it for me – peace of mind. Regardless of the pressures of long term care, and I have only touched on some aspects of them, I have the peace of mind that she is getting the best care from me, not in a care home, but in our home, a home that cares.