How It Really Feels To Care For A Loved One With Dementia

Supported by Gower

Many of us are lucky enough to be able to take the little things in our relationships for granted. An easy conversation over breakfast with a partner or a quick chat on the phone with a parent. Most of these everyday encounters end with a carefree ‘see you later’ - a simple statement that holds the promise of many more moments like this, which are so ordinary they barely register. 

Until something happens that slowly but surely changes your relationship irreversibly. For many, that catalyst is dementia. 

We spoke with Kathy, who shared her honest and moving thoughts on what life is like when you are caring for a partner with dementia. With insightful comments, she described the rollercoaster of emotions that can take over your life, from anger and confusion to happiness and remorse. 

 

 

“Nothing is so easy again, your companion has changed. The conversation has changed or becomes nothing at all.” - Kathy

 

Adjusting To Life As A Carer

When someone you love has been diagnosed with dementia, your relationship with that person will inevitably change, with the initial diagnosis and as the symptoms of dementia worsen over time. Dementia is a challenging and emotional journey, both for those living with the condition and for their loved ones. It is a progressive illness, meaning the symptoms can be relatively mild at first, but they get worse over time, affecting all aspects of a person’s life, including their mood and their behaviour. As the partner of someone with dementia, you may find yourself adjusting to life as a carer.

Caring for a loved one can be extremely rewarding, but it is definitely not an easy role to fulfil. The responsibility of looking after someone for a prolonged period of time takes its toll on your wellbeing, physically and emotionally. You may feel more stressed or less patient than you would normally be in certain situations, and everyday situations you once would have taken in your stride can leave you feeling overwhelmed.

 

“These are some of the words I would use to describe a carer's life; tiredness, frustration, loneliness, confusion and exasperation” - Kathy

 

 

“Your life is taken over by the illness and it is a 24/7 type of a job.  Every day can be different, anger one day, happiness another, but any anger will be forgotten within a short time.” - Kathy

 

Shifting Responsibilities 

There is a dependence that comes with dementia that impacts your relationship in many ways. The balance shifts as your relationship changes from being an equal to taking on the role of a carer. A person with dementia will need help with everyday things they once would have taken in their stride, and that can be difficult for them and for you to accept. You may find that you have to take on responsibilities that traditionally fell to them, such as taking care of the finances or the household chores.

 

'Carers can find support in the most unexpected places. Friends step up and new ones slide into your life. And of course, hopefully your family is there to help.   Although they may not have experience in their own lives they are there to listen' - Kathy

 

Prioritising Self Care

The impact of being a carer on your life cannot be overstated. It can be very positive and rewarding, helping a loved one to live as fulfilling a life as possible. But it can also be very challenging and it can be difficult to adjust to a life neither of you expected or planned for. For many, stepping back from the role of a carer is not an option, so it’s important to remember to look after yourself. The importance of self care when caring for others cannot be emphasised enough - you simply cannot look after someone else effectively if you are struggling to look after yourself.  

 

“When the illness is first diagnosed you certainly feel the loneliness and frustration.  Where do I go, what do I do? There seems  to be so many pathways and names of people who suddenly appear in your life. Who are they all and how do they fit into your new life?” - Kathy

 

Accepting Support

As with any life changing condition, sometimes finding the right level of support for you and your loved one can be difficult. You may have to adjust to a whole raft of new people who are now involved in your life, at a time when you may feel like withdrawing. They are there to help, but it can feel overwhelming as health and social care professionals enter your life and you receive lots of new information to let you know what support is available to you. Voluntary organisatoins can be a valuable source of support at times like this. For example, many of the volunteers who work with the Guernsey Alzheimer’s Association have experience of caring for families with dementia, so they have a personal understanding of the concerns of carers. 

 

'The biggest help for me is the Guernsey Altzheimer's Association. They work hard with locating brilliant speakers and activities. I have learnt a lot, and we always come home feeling happier from the weekly meetings' - Kathy

 

 

“Hard work it may be, but your companion only needs to give you a hug and a kiss and everything is forgotten” - Kathy

 

Enjoying ‘The Little Things’

As difficult as it may be, looking after someone with dementia can also be a joyful and loving experience. Memories can surface that prompt happy conversations about times gone by, barriers can be broken down as people become less inhibited. A smile, a hug or a shared moment of humour can make your day and the ‘little things’ take on a whole new meaning. Your loved one is still the same person and caring for someone with dementia can offer up new opportunities to spend time together and connect in ways that may not have been possible otherwise. 

 

'Laughter can come back into your life. Life is tiring, but you can still find things to laugh about in your day” - Kathy

 

Where To Find Support

Support is available for people living with dementia and their carers, to help them to carry on living as full a life as possible, and to encourage them to carry on doing things that matter to them.Guernsey Alzheimer’s Association supports carers of people with Alzheimer’s and other types of Dementia and Dementia Friendly Guernsey offers a dementia care pathway to help people living with dementia and their families to access support and plan for the future.