Family and friends
You may feel socially isolated if your family and friends have pulled back from your relationship or you have little time to spend with them. They may hesitate to spend time with you and the person with Alzheimer’s disease because they worry about not knowing what to do or say. They may also not understand the behaviour changes caused by the disease or be unable to accept that the person has the disease.
Take the initiative to contact family and friends and explain that, while Alzheimer’s disease has changed your lives in some ways, you value their friendship and support. After inviting them for a visit, prepare them for the changes in the person with Alzheimer’s — physically, emotionally, mentally and intellectually. Provide suggestions as to how to communicate more easily with the person and about what activities they might be able to do together.
Resolving family conflict
Caregiving issues can often ignite or magnify family conflicts, especially when people cope differently when faced with caregiving responsibilities. Family members may deny what is happening or resent relatives who live far away or are not helping enough. There may also be disagreement about financial and care decisions.
To minimise conflicts, try to acknowledge these feelings and work through them.
- Have a family meeting. Talking about caregiving roles and responsibilities, problems and feelings can help ease tensions. You may want help from a professional or religious counsellor.
- Recognise differences. Some family members may be hands-on caregivers, responding immediately to issues and organising resources. Others may be more comfortable with being told to complete specific tasks.
- Share caregiving responsibilities. Make a list of tasks and include how much time, money and effort may be involved to complete them. Divide tasks according to the family members’ preferences and abilities.
- Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer’s and the caregiver, and decide if any changes in responsibilities are needed.
If your spouse has Alzheimer’s, you will probably experience significant changes in your marriage as the disease progresses.
New roles and responsibilities
You may find yourself taking on a new role in your marriage as your spouse’s memory worsens. The person with Alzheimer’s disease may no longer be able to perform certain tasks, such as balancing the chequebook, handling financial, tax and legal matters, and doing certain household chores. Making important decisions on your own may feel overwhelming.
To be prepared for this change in roles, it is important that you locate financial and legal documents, such as life assurance policies, property deeds and retirement annuities, soon after your loved one is diagnosed. You may need to turn to family, friends, professionals or community resources for assistance.
You may be feeling enormous grief because of the changes in your relationship. You are not selfish for experiencing these feelings. Given your spouse’s cognitive decline, you may no longer be able to have the same emotional or physical intimacy that you once shared.
It is typical that people with Alzheimer’s disease experience changes in their sexual drive. Depression can cause reduced interest in sex. Some caregivers report changes in sexual feelings toward their loved one as a result of providing daily caregiving tasks. A physical illness and reactions to medications can also reduce sexual desire.
Changes caused by the disease may cause the person with the disease to exhibit inappropriate behaviour and increased sexual drive. React to your spouse with patience and gentleness. Give your loved one plenty of physical contact in the form of hugging, stroking or patting. In many cases, he or she may simply be anxious and need reassurance through touch and gentle, loving communication.
There is no right way of telling family and friends about a diagnosis of dementia. The decision will depend on the strength of the relationships and the personalities involved. Try to respect the person’s decision about how or whether to tell other people about the diagnosis.
Telling the children
When you are very upset about someone close who has dementia, it is easy to forget just how anxious and confused your children may feel. Children need clear explanations and plenty of reassurance so they can cope with the changing situation. Though the facts are upsetting, it may be a relief to know that their relative’s strange behaviour is part of an illness and not directed at them.
You will have to ensure that your explanations are at the level of your child’s age and understanding, but always try to be as honest as you can. It is more upsetting for children to find out later that they cannot trust what you say, than it is to cope with the truth, however unpleasant, with your support.
- It is always hard to take in worrying and sad information. You may find that the children will need explanations repeated quite frequently, so be very patient.
- Encourage the children to ask questions and listen to what they have to say, so you can find out what might be worrying them.
- Give them plenty of reassurance and hugs and cuddles at the right time.
- Practical examples such as your relative forgetting an address, getting words mixed up or wearing a hat in bed, can often help you make a point more clearly.
- Use humour. It often helps if you can see the funny side of a situation and laugh together. Do not laugh at the person with dementia, however.
- Concentrate on the things that the person can still do, as well as those that are becoming more difficult.
- Your children may be frightened to talk to you about their worries or show their feelings in case they upset you further. They may need to be encouraged to talk about it.
- Young children may believe that they are responsible for the illness because they were naughty or had ‘bad’ thoughts. Older children may worry that the dementia is a punishment for something their relative did in the past. In both instances, they will need to be told that this is not so.
- Children will need reassuring that it is unlikely that they or any other relative will develop dementia just because they are related to someone with dementia.
Changes for your child
It is important to remember that when someone develops dementia, everyone in the family is affected. Children need to know that you understand the difficulties they face and that you still love them, even though you may be irritable or not giving them enough attention. Try to ensure that you make time to talk to your child without interruption. Young children will need reminding of just why their relative is behaving in such a strange way and all children may need to talk about their own feelings, as new problems arise.
Difficulties they may wish to discuss might include:
- Grief because of what is happening to the person they love and anxieties about that person’s future.
- Fear, boredom, irritation or embarrassment as a result of the person’s behaviour, perhaps mixed with guilt for feeling this way. This reaction can be expected more from the teenager than from the younger child.
- Having to take responsibility for someone they may remember as having been responsible for them.
- Feelings of loss because their relative can no longer communicate with them or because things are not the way they were.
- Anger because other family members are stressed and have far less time for them than before.
Children react differently to experiences and show distress in different ways.
- Behaviour that may seem attention-seeking or naughty, nightmares or difficulty sleeping, or inexplicable aches and pains may suggest that your child is very anxious about the situation and needs even more reassurance.
- Schoolwork often tends to suffer as children who are upset find it harder to concentrate. It is a good idea to have a word with your child’s teacher so that the school is aware of the situation and understands the difficulties.
- Some children put on a cheerful front or appear uninterested although they may, in fact, be very upset. You may need to encourage them to talk about the situation and express their feelings.
- Other children may be very sad and, at times, cry. These children need a great deal of attention over quite a long period. Try to give them some time each day to talk things over, even if you are very busy.
- Teenage children often seem involved with themselves and may retreat to their own rooms or stay out more than usual. They may find it particularly difficult to cope because of all the other changes and concerns in their lives. They will need reassurance that you love them and understand their feelings. Calmly talking to them may help them sort out some worries.
Involving the children
- Try to find ways of involving your children in the care and stimulation of the person with dementia, but don’t give them too much responsibility or let it take up too much of their time. It is very important to encourage your children to continue their normal lives.
- Make it clear that just being with the person for short periods and showing love and affection is the most important thing they can do.
- Try to ensure that time spent with their relative is pleasant – going for a walk together, playing games, sorting objects or making a scrapbook of past events, for example.
- Talk about the person with dementia as he or she was, and show your children photographs and souvenirs.
- Take photographs of the person with your children to remind you all of the good times, even during the illness.
- Don’t leave your children alone in charge, even for brief spells, unless you are sure they are happy about this and can cope.
- Make sure your children know that you appreciate their efforts.
- Tell your children how proud the person would be of them if they could understand and express themselves.