About dementia

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Impact on family and friends

For all family members

Some of the most common feelings families and caregivers experience are guilt, grief and loss, and anger. Rest assured that you are not alone if you find yourself feeling these, too.

Guilt

It is quite common to feel guilty—guilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.

If the person with dementia goes into hospital or residential care you may feel guilty that you have not kept him at home for longer, even though everything that could be done has been done. It is common to feel guilty about past promises such as “I’ll always look after you,” when this cannot be met.

Grief and loss

Grief is a response to loss. If someone close develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship. People caring for partners may experience grief at the loss of the future that they had planned to share together.

Grief is a very individual feeling and people will feel grief differently at different times. It will not always become easier with the passing of time.

Anger

It is natural to feel frustrated and angry—angry at having to be a caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for her difficult behaviours and angry at support services.

Sometimes you may even feel like shaking, pushing or hitting the person with dementia. Feelings of distress, frustration, guilt, exhaustion and annoyance are quite normal. However, if you feel like this, or worry that you could lose control, it is important to discuss your feelings with someone such as your doctor or a staff person from the Alzheimer Society.

Don’t forget the children and teens

With so much focus on the person who has dementia, sometimes younger family members don’t get the attention they need, or the illness is not explained in a way they can understand.

Children often experience a wide range of emotions when a parent or grandparent has Alzheimer’s disease. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” College-bound children may be reluctant to leave home.

Reassure young children that they cannot “catch” the disease from you. Be straightforward about personality and behaviour changes. For example, the person with Alzheimer’s may forget things, such as their names, and say and do things that may embarrass them. Assure them that this is not their fault or intentional, but a result of the disease.

Find out what their emotional needs are and find ways to support them, such as meeting with a counsellor who specializes in children with a family member diagnosed with Alzheimer’s disease. School social workers and teachers can be notified about what the children may be experiencing and be given information about the disease. Encourage children and teens to attend support group meetings, and include them in counselling sessions.

Have the person with Alzheimer’s disease record his thoughts, feelings and wisdom to "be with them" as they experience important events in their lives (graduations, dating, marriage, births and deaths).

There is a lot to think about when caring for someone who has Alzheimer’s disease or a related dementia. But there are ways you can help yourself or get others to help you.

Here are some examples that might help you cope with role changes within the family:

Ask for help

Sit down with the members of your family and ask what they are willing to do to help. Give them ideas and suggestions. Don’t just assume that they know what you need. They can’t read your mind, and they may already be doing what they think is helpful. Assume that most people are doing the best they can under the circumstances. While this is not always the case, most often it is.

Recognize that you are dealing with a stressful situation. Some people overlook the problems they are experiencing because they slowly take on more and more responsibility.Recognize all that you have taken on and congratulate yourself on what you have been able to do. Then see about getting any help you might need.

Keep family members informed

This can be done in different ways. You can call and talk to people individually or you can write a family newsletter. Copy the letter and send it to different members of the family so you don’t have to rewrite the same information to each one. Just remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing they’ll be to pitch in and help.

Caregiving isn’t easy, and it’s important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyone’s benefit.


Last Updated: 04/10/14