What You Can Do

It is a good idea to tell your family of any changes you notice in yourself. And, if you have already recognized that you are experiencing memory issues, you also could ask your doctor to discuss the effects of dementia with your family.

I say this because dementia will affect you. You will need to come to terms with the changes occurring in your life. These gradual changes may be hard for you to think about, discuss aloud, and/or accept as your future.  But if you know what to expect, then you will have the chance to plan. At first, you may have trouble finding words, finishing thoughts, following directions or remembering names and other information. You may become irritable or frustrated. You may feel confused. You may notice changes in your personality (mood and behavioral). You will find increasing problems with remembering and thinking as time goes on. Reading and writing will gradually become more difficult.  It will be harder to take in new information and make decisions.  Later, you will find your everyday activities difficult. You will begin to have trouble with tasks such as remembering appointments and shopping lists, coping with money and cooking. Eventually, you may need help with basic activities such as washing, dressing and eating.  These changes are very gradual or appear suddenly. You may stay the same for years or you may progress through the stages quickly. Every person experiences dementia differently and it is impossible to predict when and what changes will occur to you personally.

Believe it or not, there are many positive steps you can take to help yourself, now, in the present moment.

Write Things Down

Make a list of what you need to do for the day, week, etc.  Keep a diary and get into the habit of checking it regularly.  Make notes of where things are located.  Print out a weekly diary and hang it on the refrigerator.

Keep Important Items In One Place

Keep documents, (power of attorney, wills), insurance cards and policy, money, house and car keys, and glasses, hearing aides, dentures, etc. in one place.

Make A Routine For Yourself

You may find it easier to keep track if you have a regular way of doing things and a particular time to do them.  Place your medication in a pillbox.

Take Care Of Yourself

Eat well.  Exercise regularly.   Take your medication as prescribed. You can still enjoy a drink, as long as you are sensible about it.

Keep Up Your Social Life

Visit with your family.  Visit with your friends.  Keep going out. If a friend seems to find it hard to know what to say to you, don't let them drift away.  Explain that you still need to see them, even if it is awkward at first for them.

Take Care Of Your Mental Health

Make sure that you have someone to talk to about your feelings about the illness. If you are depressed or have other worrying feelings or thoughts your doctor may be able to help.

Stay Positive

Concentrate on the things you can do instead of things that have become too difficult.

Tell Your Family You Have A Memory Problem

Don't be embarrassed to ask others to repeat themselves or explain things a little slower.

Emotional Support

You are not alone.  You don't have to face dementia by yourself. You can find emotional support from all kinds of people:  family, friends, professionals, volunteers, and other people with dementia.  It is very important to discuss your feelings with someone.  At first, it can be hard to know where to start or what to do. You may be afraid of other people's reactions: will they be afraid, will they feel awkward, will they support you, or will they reject you. Remember, it is important to talk to someone. If you are not ready to discuss your feelings with your family, then perhaps you could discuss your feelings with an in-home health care nurse and social worker.  Again, please remember, there is always someone to talk to, someone who knows about dementia, someone who can help you think things through, someone who can provide you with information related to your type of dementia.

 

Practical Help

Dementia means that you will gradually find it more and more difficult to cope with activities of daily living, such as: driving, finances, shopping, cooking, house chores, and own hygiene.  You will gradually find it difficult to plan, organize, and remember life events.  Ask your doctor for recommendations regarding: home health care agencies, private duty caregiver companies, adult day centers, safety adaptive equipment (wheelchair, walker, shower chair, raised toilet seat, grab bars, safety alert system), and alternative living options (senior apartment community, assisted living facility, nursing home center).

 

Planning For Your Future

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.

 

Work

Your employer cannot legally fire you just for having dementia. However, in time, the symptoms of dementia will interfere with your ability to do your job. And, eventually, you will have to retire from your job. In the present moment, you could discuss with your employer what arrangements they might have for shorter hours, a simpler job, or early retirement. If you have a pension, find out how much you will get if you retire early. You may be able to get a lump sum payment. Discuss what benefits you and your family would be entitled to with your Human Resource Manager and/or Union Steward.

 

Driving

Dementia will affect your ability to drive and many people find giving up their right to drive difficult. A car is an important part of independence, and without it, you will have to become more dependent upon your family. There may be practical steps you can take now to lessen the anxiety, worry, and stress you will feel once you become dependent on your family for transportation.  Find out about senior driving programs, free transportation for seniors, cabs and wheelchair van service for a fee.  Trust your family and friends are willing to give you a ride.

Please recognize that if you have a diagnosis of dementia your insurance company may no longer insure you and you will have to give up driving. 

 

Medical Care

You may have ideas about what type of medical care and procedures you would like to have, or not 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, such as, a Living Will or Power of Attorney for Healthcare.  Living Wills are not legally binding on doctor, 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.

 

Living Arrangements

Discuss carefully with your family 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.

 

Financial Arrangements

Dementia will affect your ability to look after your financial affairs. It is important to think about this now so that you can arrange everything the way you want it. Make sure that all your important papers are in order, such as your mortgage, insurance, and taxes. If you can, go through them with someone you trust.

 

Power Of Attorney

You can choose who will look after your financial affairs if you become unable to do it. Ask an attorney to draw up a power of attorney so you can establish a patient advocate to deal with your money affairs. Whoever you appoint as your patient advocate need not take over your affairs as long as you are still capable of doing it yourself, but they must be appointed in advance. It is important that you do this as soon as you can, to make sure that no one claims later on that you weren't well enough to grant a power of attorney.  You can choose what you would like your attorney to be able to do for you. For example, you might want them to be able to run your bank account, complete your tax returns, sign documents or buy and sell property for you.  It helps if you can discuss who you choose as your attorney with the rest of your family so that they are aware of your wishes.

 

Wills

Like everyone, you should make a will to make sure that your property and possessions go to the right people when you die. It is very important to draw up your will now, while you are clear about what you want.