Dealing with changes in your relationship when a loved one has dementia

If you’re caring for a loved one with dementia it’s bound to have some impact on your relationship, and on those around you. Find out what might happen and how you can continue to enjoy each other’s company

Could this be you?

You know you’re the right person to be caring for your partner or parent but,
• You worry it might permanently damage your relationship.
• You feel uncomfortable doing tasks they used to do.
• You find yourself grieving for the relationship you used to have.

It’s hard enough being a carer without having to cope with the emotional rollercoaster that dementia brings with it. But you aren’t alone. The vast majority of carers experience a raft of complex feelings and emotions about their changing relationship with the person who has dementia.

3 questions you might ask yourself

1. What’s my role?
Your loved one may have been quite happy to take care of the bills and do most of the driving, shopping or cooking. Now you have to do more and more of those things yourself – it’s not a role that fits naturally, in fact it’s often a struggle.

Tip: Ask for help. Taking over finances or home maintenance can be daunting so enlist the help of other family members or friends. The more adept you become at handling the practical changes, the more confident you will feel about dealing with the emotional ones.

2. Where are my friends?
Despite growing awareness, dementia still carries a stigma which can result in friends or family you used to rely on or enjoy spending time with, avoiding you because they don’t know how to handle it. This, in turn, could lead you and the person you’re caring for to feel lonely and isolated or struggle with depression.

Tip: Make contact with the people who’ve drifted away. Encourage them to visit or ask them to help in a different way. For example, maybe they could drive you to a hospital appointment or help you work out what’s wrong with the boiler?

3. What’s happened to my family?
You might always have been a close, loving family and assumed you’d all rally around and support each other after the dementia diagnosis. Instead you’ve been squabbling and rowing about what to do, and can’t find any common ground on the financial or legal issues such as Power of Attorney.

Tip: Keep talking. Once you’ve all had time to get used to the diagnosis (it might take some people longer than others so try to be patient), call a family meeting and try to find some common ground. If you still disagree take professional advice too or get help from online communities. But try not to fall out. Remember, your loved one needs as much support, from as many different sources, as possible – and so do you.

How to cope with...

1. Anger
Why: Being diagnosed with dementia can make many people feel angry at the sheer injustice of it. Unfortunately it’s often those closest to them (both physically and emotionally) who bear the brunt. A partner or parent who was once calm and quiet may now be prone to angry outbursts and aggression which seem to be mainly directed at you.

What might help: Take time out
It’s important for both of you to have some space away from each other. Carer’s all need regular ‘me time’ and people with dementia need social stimulation. Maybe they could to go a day centre, visit a friend, or take up a new hobby that gets them out of the house. You may also want to look into setting up some respite care.

2. Loss of what you had
Why: You used to be honest and vulnerable with each other, share common interests and talk about things that mattered. Now you can’t help feeling sad about all you seem to have lost.

What might help: Find common ground
Try to focus on activities and tasks you both still enjoy and can still share. For example, you may not be able to do the crossword together anymore, but you could go for walks, cook together, listen to music together or watch a favourite film. Simply enjoying each other’s company could make you feel closer and more positive.

3. Changes in your sex life
Why: Dementia can often mean big changes to intimate relationships. Differing sex drives and changing roles can make sexual intimacy an area of great uncertainty and worry for both of you.

What might help: Stay positive
Dementia doesn’t have to mean the end of a happy sex life. Many couples find new ways to enjoy physical intimacy and closeness by keeping an open mind about what ‘sex’ means to them, and then working out ways to achieve it. You could also talk to other carers in our community to find out how they’ve managed this very personal issue. For more information on how dementia can affect intimate and sexual relations and how to cope, click here.

Good to know

Dementia can also bring some welcome changes. For example, the person who used to be very quiet and reserved could become more outgoing and willing to have fun with the grandchildren. The person who used to spend hours cleaning the house might now prefer to dance or sing, and the person who found it difficult to say ‘I love you’ may have no such trouble now. So be ready to embrace these changes and enjoy them as much as you can!