Relationship Dynamics will change for a dementia carer

At some point whilst caring for your partner or relative with dementia

relationships often begin to change. Sometimes this is a gradual process and

perhaps goes unnoticed or ignored, while at other times it can happen

suddenly – perhaps after a diagnosis, a hospital stay or a particularly difficult

period of time or circumstance

​

As a husband or wife you may find yourself taking on new roles, like giving

constant reminders, organising, advocating, and dealing with financial

matters. You will start handling appointments, medications, finances, and

perhaps many other things that previously the other will have dealt with. It

can seem sometimes that you have to think for two people now and it can

become mentally and physically draining. You may also find that you become

the “entertainment manager”, ensuring that the person you are caring for has

a daily schedule of activities and routines that you need to organise each day.

It is not easy to realise when your role as a partner, child, or a close friend

slowly blends into that of a being a full time Carer and this can feel very

unsettling indeed as realisation sets in

​

Most relationships are based on give-and-take - we comfort each other, share

ideas, split responsibilities, laugh together and help each other through tough

times. Even if one person is stronger in some ways, there is usually a feeling

that love, understanding, and support go both ways. Dementia slowly changes this balance.

Someone living with dementia might not be able to offer reassurance,

remember important talks, notice emotional needs, or take part in the

relationship as they used to. They may lack the empathy that you are used to

them showing. Conversations can become repetitive or confusing, making

decisions taken together happen less often. Routines, humour, closeness, or

companionship may start to change

​

Many carers say they feel emotionally alone, even though they are still

physically with their loved one - This is often one of the hardest and least

discussed parts of dementia care. People usually notice the practical side of

caring, like appointments, tiredness, and responsibility, but talk less about the

emotional changes that happen in the relationship

​

You may really miss talking things over with your partner like you used to and

feel guilty for losing patience with someone who no longer notices your

efforts. A friend might stop visiting because conversations are hard, leaving you to carry the emotional load alone.

These experiences can stir mixed emotions that many carers find hard to talk

about. Along with love and loyalty, there can also be sadness, resentment,

frustration, loneliness, guilt or anger. People sometimes judge themselves for

these feelings, thinking they should just be grateful their loved one is still here

​

In dementia care, grief often starts long before any physical loss - you may

start grieving the slow changes in someone who is still physically there.

You will miss those conversations you no longer have, the plans you once

shared and the equality within the relationship seems to fade along with the

personality traits of the person who you love. That lost sense of being

emotionally recognised or understood is hard to accept

​

Often there can be little recognition from others, because unless you have

experienced the challenges and difficulties of looking after someone with

dementia twenty four hours a day, seven days a week – It is incredibly difficult

to understand just how hard that existence can be -Instead, carers are

expected to keep going, coping, organising and supporting others while

carrying a quiet sadness in the background of their everyday life - and yet,

within all these painful changes, love often remains remarkably present

(although it may not look the same as it once did)

​

Sometimes love becomes patience… It means answering the same question

many times without getting annoyed. It’s sitting together in silence when

talking is hard. It’s gently helping someone get dressed or helping with

continence issues while respecting their dignity. It’s learning to join their reality instead of always correcting them - Sometimes love really becomes protection

​

Managing difficult decisions means making tough decisions. It’s speaking up

during medical appointments. It’s noticing signs of distress that others might

not see. Taking on responsibilities your loved one can no longer safely handle

on their own. It’s “stepping up” up both emotionally and physically, even when you feel tired, unsure, or heartbroken

​

Sometimes we don’t realise just how much we actually do and how much it

takes out of us because it has become “normal”.

 Noticing how the relationship

is changing is often the first step toward being kinder to yourself. It can feel

overwhelming and you may feel a sense of helplessness.

The hardest thing of all to do sometimes is just to ask for help

​

Talking openly with trusted friends, other dementia carers or a counsellor can

help ease the loneliness many people feel. Hearing others talk about the same

emotions often brings a huge sense of relief - and feelings that once seemed

wrong or selfish suddenly start to make sense

​

Dementia changes relationships, but it does not take away the history,

meaning, or emotional importance of a life shared. The relationship may no

longer look as it once did and acknowledging that loss is important as well as

pretending that nothing has changed often increases emotional strain.

One of the hardest truths in dementia care is that two things can be true at

once: A deep sadness for what is changing and lasting love for the person who is still here.

​

Looking after your own wellbeing as well as looking after someone else on a

full-time basis can be challenging to say the least – But it is vitally important

that you do just that - Dementia can take two lives – don’t let it, please.

​

​

This text amended and inspired by words from Jurgen Schwarz Dementia Counsellor

TD/Issue1 /Jul 26