TIPS FOR CARERS

excerpted from Living Well Handbook of NHS Gloucestershire, Unit 5220 Valiant Court

Early days

After the diagnosis of dementia for someone you love:

Try not to worry. You are now a carer and didn’t ask to be one. Take a deep breath. As often as you need, when things feel over-whelming; retreat to the garden or just anywhere to give yourself a few moments of peace. Most importantly keep things in perspective and don’t apportion blame to yourself or anyone else.

Practical help. Write a list of the skills you don’t have but now wish you did. Be realistic. For example, learn how to read a meter, adjust timers or check fuses but engage an electrician for other jobs. Make a list of handy numbers to call.

Transport. Consider how getting around might be affected. Don’t rush, but start thinking about whether it is time for the person for whom you care to stop driving. Enlist help to make the decision. Raise the subject with him/herself talk to your GP and seek advice from the DVLA, family and friends.

Daily life. Consider the implications of caring at home, both in the immediate future and long term. Ask Social Services or your Occupational Therapist about adaptions or Assistive Technology.

Accept help. As well as statutory sources of help, talk to friends, family and neighbours so that they can understand how to help you.

Take your time. It is OK to feel bereaved and to grieve for the carefree life you once had. Nothing will ever be the same again. Take your time to
feel. You’ll feel challenged, confused and cheated before you move on, you will know when that time has come. A sense of relief can sometimes take over.

Next Steps

You. Don’t delay, join a Carer’s Group and receive and give mutual support. Find out what courses are available and learn about benefits and entitlements.

Non negotiables. What might be yours? Identify those things that you are not prepared to give up. It will help you to feel in control when too many conflicting demands occur, and you need to prioritise.

Speak up. In meetings, via local radio and newspapers. Talk about what it is like to be a carer. It is also there to help you when you feel alone. It is not being disloyal. Share the load and the message to help ensure that attention is being focussed on providing help and research on dementia.

Fire fighting. You may spend a lot of time doing this; plugging gaps and getting through one challenge after another. If so, ask an advocate at your Carer’s Group to help you check that you are receiving everything to which you are entitled. Your Care Manager or Dementia Advisor can also assist.
Respite. Don’t leave enquiring about respite care until you are desperate. Try to sample a day so that you can both adjust and assess the benefits. What suits one may not suit another, so try different options until you are content.

You again. You are doing a massive job which will sap your energy. Look after yourself and stay well. If you can take a walk, your whole feeling of wellbeing may be enhanced and the world seem a calmer place.