Being a carer for a loved one with dementia

Being a carer can be a rewarding and challenging role, particularly if you are caring for a loved one. In this article, we cover off in more detail, some of the emotions and impact that being a carer can have. Some carers do become impacted by sleeplessness, depression, exhaustion, irritability and various health problems, but many do not. Remember the importance of looking after yourself. You may not think that you have the time for this but by getting help and support, you can take time out for yourself. 

Denial

Whilst it is a negative and becomes dangerous if not dealt with properly, it is also a coping mechanism. It will give you time to adjust to the new reality you are facing, living in, but you can’t stay like that forever. At some point, the carer will need to start to focus on the practical implications of what is happening, what is required, and then get the information that is needed to work out a plan for the future. As highlighted though, don’t worry if you don’t want to start planning and executing plans from Day 1, it is ok to give yourself time to adjust. 

Anger 

This is completely understandable. Your anger and frustration about how unfair this is, how cruel life can be is very real and could build up inside you to the point you want to express it. However, it is important to remember, that whilst it’s completely normal to want to express this anger, you need to find a place where it is safe for you and others to do it. Saying things to the patient or other people close to you may lead to more regret and anger further down the road. You may regret it. 

You may have worked hard all your life and was looking forward to a fulfilling and restful retirement, you have a right to be angry, but manage that anger and express it safely. 

Grief

The patient may not have died, but human’s feel grief for loss, not just death. You will grieve for what the person is ‘losing’, what you are losing. To start with, this will likely be your overriding emotion, you may struggle to think of anything else. Sleep may be a respite from the feeling, but the morning’s will see it come back. You will need rest and distraction. It is a good idea to share these feelings, talk to someone about how you feel. It’s ok to feel the way you do, time can make it less painful, take the edge of it, but not always, so talk to people, take advice and seek support. 

Negative thoughts

This is a more general emotion. If you are dealing with a sense of anger and grief, then it is natural for this to cloud your thoughts on everyday matters and tasks. It is very easy to become negative about every little thing, about the world in general. Again, this is natural, don’t beat yourself up over this. Other people, a lot of people, are in the same boat, you’re not alone. 

Isolation

Caring for someone can be overwhelming and take up most of your life, and before you know it, you can become quite isolated and cut off from friends and family. It is crucial to understand that family/friends are not a luxury, they are essential for your wellbeing, and maintaining health and sanity. You need to be able to tell friends that you need them, and you will need them, practically and emotionally at times. It can often help to give family members and friends specific jobs to do for you, so you and they both know how they are helping. 

Anxiety

Anxiety about your current situation and worse, anxiety about what the future holds is a common problem for carers, from the time of diagnosis. The best way to tackle this is to be proactive, get as much information as you can about the support that is available. As discussed in a previous blog, seek out the ‘Carers Assessment’, and get it completed. Search online, like you have done here. There are numerous sites as well as our own that can help. Read up, read blogs, read about all the help you can. 

Respite care

It is possible to gain support to help look after your loved one, so that you can have a holiday or a break away. This is called respite care and it involves someone taking care of the dementia patient, while you have a break. There are volunteer services who can look after the dementia patient while you go and do something for you. Your local council should be able to provide details of community groups and local charities close to you that may be able to help. The last thing the dementia patient needs or even wants is for your health to be impacted and you cannot underestimate the emotional and physical pressure that being a carer can put on you.