Dementia – A Family Affair

Dementia is one of those words that can stop you in your tracks. Even imagining it happening to you can feel unbearable. Perhaps it’s easier to think about it happening to someone else, even someone you love: still frightening, but at a slight distance. But, when it does happen in your own family, that distance disappears. Dementia does not affect one person; it changes life for everyone around them.

Dementia is often described in terms of what happens to the person diagnosed, with memory loss, confusion, personality change and increasing dependence. Its effects however spread much wider than that and over time it touches every part of life: emotional, practical, relational and financial. The person with dementia is living through many losses, but, if you love or care for them, so are you. You are not standing outside it, you too are living through it.

One of the hardest things is that the losses don’t happen all at once. They come gradually. You may lose companionship, shared routines, mutual recognition, emotional closeness, and eventually even your sense of the person as they used to be. That can bring a kind of grief that begins long before death. You are still caring, still loving, still showing up, but at the same time you may already be mourning the losses that continue to occur.

Changing roles

As dementia progresses, roles shift. Companions and partners become guardians, siblings become carers, the shared knowledge of a lifetime erodes. This can feel especially hard if you are caring for a parent. The roles begin to reverse as in some ways you become the parent to your parent, while still missing the person who once did that for you. That is not just a practical change. It can shake your sense of who you are.
If you have been caring for someone day to day, moving your loved one into care can leave you feeling lost. However hard that role has been, it may also have given your days structure and meaning. It may have been one of the main ways you showed love, and when that changes, you be left feeling unmoored.

Decision making

The burden is not only emotional, but there are also hard practical implications. As capacity diminishes, you may have to make more and more decisions for someone who can no longer make them for themselves. While initially they may be daily issues gradually they become choices that can be life changing for the person you care for. This means shouldering immense responsibility both for making the decision and living with the consequences of these. With loss of autonomy, shared decisions are now yours alone. Love becomes tangled up with duty, bureaucracy, worry, guilt and uncertainty.
Decisions about moving people to residential care can be especially painful. Moving someone into a care home can be one of the hardest decisions you ever make. It is rarely something anyone wants, usually triggered by exhaustion, crisis, finances or the painful realisation that you simply cannot keep going in the same way. Logically knowing it is the right decision, doesn’t always make it feel right. The guilt and sadness don’t disappear just because the decision makes sense.
End-of-life decisions can be just as hard. There is not always follow a clear path, and the end can be ‘unexpected.’ It can feel easier to focus on immediate problems than to think about future decline, dying, or difficult treatment decisions. Without previous guidance from the person or agreement by all involved, decisions made during a crisis, can leave lasting doubt, rifts and scars. You want to feel you did the right thing. You want to know you did not give up too soon, and that your loved one was cared for with dignity and compassion.

Balancing life and caring

At the same time, your own life does not stop, often juggling caring with multiple other pressures, relationships and your own health. Over time, the strain can become relentless. It is not just that there is more to do. It is that there is so little rest from the emotional pressure of it all. Frustration, exhaustion, anxiety and helplessness can become part of everyday life. Guilt often follows close behind these feelings, guilt for not doing enough, for needing time off, for feeling angry, for making the wrong call, or even for feeling relief when some of the responsibility is shared.
But all these emotions are a response to unasked for prolonged loss and grief. They are not wrong or bad, they are simply your emotions
Not every caring relationship is loving or close to begin with. You may already have had a difficult relationship before dementia entered the picture. The illness itself may bring aggression, suspicion or behaviour that is hard to manage. To all of this we bring our unique set of circumstances, relationships and experiences, doing what we can with the resources we have.

Why may therapy help?

All of this helps explain why caring for someone with dementia can take such a toll on your mental and physical health. Some of the above may not yet or ever be part of your experience or may feel like it is looming in the future. Wherever you are in the journey, finding space for yourself can feel almost impossible. Without support the emotional and practical pressures can slowly leave you drained, isolated and less able to meet the challenges each new stage brings. It can feel like a lonely, largely unseen reality, running alongside the ‘normal’ world and leaving you questioning your reactions, your judgement and even your capacity to cope. There is no single right way to do this. Each of us brings our own history, relationships, strengths and vulnerabilities to the experience. What can help is finding a space that is yours: somewhere to think, feel, speak honestly and understand your own responses. You may not be able to remove the reality of dementia, but it can make it more bearable, reminding you that you are not alone, that your responses are human and that you can share difficult thoughts and emotions. Support is possible as you navigate your way through.

Dr Deborah Lee Miller
[email protected]
07354273630
Website: thesharingspace.co.uk
Instagram: the.sharingspace