Publication
Facing Dementia
| Contents: | Introduction Section One: Your diagnosis Section Two: About dementia Section Three: How will dementia affect you? Section Four: What can you do? Section Five: Emotional support Section Six: Practical help Section Seven: Planning for the future | Work | Driving |Medical care | Living arrangements Section Eight: Financial arrangements | Extra money | Paying bills | Power of attorney | Make a will | Trusts Section Nine: Medical research | Further information for you and your family |
Section Seven: Planning for the future | Work | Driving |Medical care | Living arrangements
It is important that you think about the future and how you wish to arrange your affairs. If you set things in order now, you and your family will know that what happens in the future is what you wanted.
You should start to make your plans as soon as you feel able to do so. If you wait too long, your right to make your own arrangements may be questioned.
If you are still working, your employer cannot legally sack you just for having dementia. However, in time your illness will make you less able to do your job. Eventually, you will need to give up work.
You should discuss with your employer what arrangements they might have for shorter hours, a simpler job or early retirement. If you have an occupational pension, find out how much you will get if you retire early. You may be able to get a lump sum payment. You will probably find it helpful to have someone with you at these discussions?perhaps a friend or someone from your union.
You can find out what benefits you and your family would be entitled to if you stop work. Your local Citizen's Advice Bureau will give you information and advice on benefits.
Your illness will affect your ability to drive. If you have had a diagnosis of dementia, you will probably find that your insurance no longer covers you, so you will have to give up driving. You should write to DVLC, Swansea, SA99 1BNto tell them about your diagnosis.
Many people find giving up driving one of the hardest things to do. You may feel your car is an important part of your independence, and without it, your life may have to change. This can be painful and frustrating.
There may be practical steps you can take to make the loss of your car less distressing.
- Work out how much your car costs, counting the cost of the car, tax, insurance, maintenance and petrol. It can come to a surprisingly high figure, which you can spend on buses, trains and taxis.
- Your local council may have a scheme for cheap or free public transport for people with disabilities. If you are of retirement age, the council may have travel passes for pensioners. You can find out about this from your regional council social work department or transport department.
- Family and friends may be able to offer lifts. Don't be embarrassed to ask; most people will be happy to help. Point out that you have an illness that stops you driving, just as if you were losing your sight.
You may have ideas about what health care you would like to have or not to have in the future. For example, some people have strong views about whether they would want to take part in research, or how much they would want doctors to do if they were terminally ill.
You can write down your wishes in a document sometimes called a 'Living Will'. Living Wills are not legally binding on doctors but they do help the people caring for you to know your wishes.
If you want to make a Living Will, you should talk to your doctor, and to your family and friends. Make sure they know your wishes.
Discuss carefully with your family, if you have one, what you would like to happen if you become unable to live in your own home. Perhaps there is someone who you would like to help take care of you while they are able to. But moving in with someone is not always the best answer for you or for them.
Or perhaps you would prefer your family and friends not to be involved. You might prefer to be cared for in a residential or nursing home if it should become necessary. You may get help with the cost of a residential or nursing home if the social work department has assessed you as needing to live there. Speak to your local Citizen's Advice Bureau, Law Centre or Money Advice Centre about this.
You may like to talk about the different possibilities with someone who is not involved. Speak to your doctor, social worker, nurse or counsellor, or phone the 24-hour Dementia Helpline on 0808 808 3000.
Make sure the people close to you know your wishes. Write them down if you can. Of course, no-one can know the future, and circumstances may change so that what you decide is no longer suitable. But it will help if your wishes are clear.
Summary
Plan for the future as soon as you can.
Think about what you want to do if you can no longer stay in your own home.
If you are working, talk to your employer.
You will probably have to give up driving.
Discuss your plans with family and friends.
Think about what kind of medical care you would prefer in the future.