Caring for yourself whilst you care for others

1. We all need purpose and value

Many have no idea what dementia does to those caring or supporting those living with dementia. Most, at some time feel discouraged, overwhelmed, even trapped by their circumstances and may become angry and resentful. They may be embarrassed or frightened by how the condition affects them as well as the person they care for, even feeling guilty and very alone. By recognising the purpose and value of caring, it is possible to overcome these negative experiences.

2. Feelings remain when facts are forgotten

So many words about feelings are negative, and they can overwhelm anyone at any time. We all need encouragement to carry on, whether we are caring or living with dementia. How we feel remains even when the facts are forgotten, so how things are done is so much more important that what actually is done. It is okay to be flexible and not blame oneself.

3. There is always a reason for any behaviour

Carers need to be empowered by having things explained, to be able to hear the meaning behind the words that are said. Understand that behaviour is often a reaction to something, and know that carers can make a tremendous positive difference for those they care for.

4. Patterns continue throughout life

Routines are so important, and patterns of behaviour from ones childhood reemerge when life gets difficult, and need handling with reassurance, firmness and care. The worth of a carer does not depend on the reaction they receive from those they care for. Look out for what produces a ‘good day’ and do it again!

5. Enable don’t disable

One needs to remember the person rather than their condition. Barriers can protect from harm but can make pleasure inaccessible. Those living with dementia can often help with the cooking or tasks about the house even if they have to be simplified, otherwise they will feel useless. Safety issues can be dealt with and doing things together can even facilitate conversation and help relationships.

6. Be willing to accept help

Spouses, family members and other supporters often do not get time off. They need respite or time away, perhaps when the person with dementia is at a group session or memory cafe run by Alzheimer's society, attending Sporting Moments for men or at a Day Centre. Enlist the help of Admiral nurses who look after those doing the caring, or a Dementia Friend. It is important to take any help that is available and sometimes one needs to ask for it. Social Services can assess needs and provide or recommend help. Citizen’s Advice Bureau can advise on attendance allowance and other benefits. Supporters need encouragement and reassurance, even someone just to talk to. There are books that help explain and encourage.

7. There can be joy

Those living with dementia can continue to live well, but carers need to care also for themselves, enjoying time away or some special activity for themselves without feeling guilty. The ability to love and care and to feel loved and cared for is never lost on either side. Feelings of self worth and purpose need to be encouraged - our needs are very similar! All parties can have purpose and times of joy if we use all that is available and share the impact of living in what can be a very tough place for both sides.

We do not walk alone and we can experience God’s support and care in unexpected ways if we turn to him.