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Looking after yourself as the carer of someone with dementia

Being a full-time or part-time carer of someone living with dementia can be hugely challenging.  If a couple have been together for 50 plus years and one is looking after the other then it can be very difficult to continue living independently and “as normal”.

And if it’s you caring, possibly from a distance, for either or both parents or relatives in this situation then it becomes a huge juggle to look after them, yourself and your family, deal with all the care issues and concerns, keep everyone including yourself healthy, whilst continuing to keep up with work and friends.  So, here are a few ideas that might help you and them.

Saying “yes” to help

Taking time out for yourself is important.  No-one should feel they have to do it all.  Breaks are good for a carer’s physical and mental well-being.  When people offer to help, the answer should always be “YES.” Maybe compile a list of things people can do to help, whether it is cooking a meal, picking up a prescription, helping in the garden or staying with your elderly parent while you or their spouse goes out.  It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support.

Respite care

Sometimes more than a few hours off are needed and you may need to consider respite care for a few days or even a week or more.  Respite care (or replacement care as it is sometimes known) can be provided at home or you may consider moving your relative to residential care for a short holiday.   This can also be used as a stepping stone to see how they would cope if necessary to move them to residential care in the future.

Keeping up with family and friends and keeping busy

It’s important to keep in touch with family and friends and make sure that non-carer activities feature in every day life.   Encouraging parents to keep up with hobbies can prove a useful distraction when times become stressful.    Spending even small amounts of time away from the house doing something social can leave everyone including you revitalised and ready to resume caring activities.

There may also be local organisations and groups that provide respite and time out – lunch clubs for Dementia carers – or events organised by the church, the WI or other charities.  Really worth checking out what might be available – also local trips and activities – just for a change of scene if nothing else.

Others in the same situation

Finding others who are in the same situation as you as a carer can prove helpful – swapping stories with those who can understand what you are thinking about can be very cathartic.   Check out Alzheimer’s UK and Carers UK for local groups nearby.

On-line forums

In addition to meeting in person, there are on-line communities and forums.  These are a great way to share your experiences of caring for someone with dementia, as well as reading what others are going through.

Talking Point is the Alzheimer’s Society’s forum. It has people with dementia sharing their information and advice, and supporting each other.  Carers can also turn to on-line communities on the Carers UK forum and the Carers Trust forum.

The perfect carer

There is no job description for being a carer for an elderly parent.  It’s bloody hard emotionally and practically.  It is also a privilege to be able to look after someone who spent years looking after you, and knowing that you did everything you could to care for them when they needed it.   Guilt is a much  over-rated emotion and one to be avoided wherever possible.

If you have any experience you would like to share about caring for people with dementia, do join the conversation in Age Space Forum.