If you are a family caregiver, you will experience changes in relationships with your loved one with Alzheimer's, family members, and friends.
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.
(For more information see the section on sexuality)
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.