A diagnosis of dementia affects the entire family. A person with dementia needs more and more help as the disease progresses. Family members, at least at first, give much of the help required. To give this help, they often have to take on new responsibilities, adapt to greater demands upon their time or alter the patterns of their own lives. These changes may be extremely stressful, both physically and emotionally.
Today family members often live at some distance from each other. When a relative needs increasing support, caring from a distance presents additional and special problems.
Note: Since the relative needing help is often a parent, we will refer to the distant relative as “parent” and the caregiver as the “adult child.” The information also holds true for others within the family who have different relationships.
Staying in touch from a distance
Staying in touch from a distance requires regular communication and involving others to help. Here are some suggestions:
Establish a routine
Regular contacts are important in communicating with a distant relative. An established routine can be reassuring for everyone. Call on the telephone or write letters/emails to exchange news and find out how things are going. Modern technology makes it possible to help distant family members feel close. Keep in mind, however, that equipment may only be useful for those in the early stages of the disease.
Meet the doctor
Arrange to meet your *parent’s doctor to get to know him or her. Establish a way to keep in contact. Good communication is essential, and it will be much easier and more efficient if you meet the physician personally at least once.
Maintain contact with other caregivers
Stay in touch with any caregivers who are on the scene. This may include a neighbour, a friend, or a relative who lives with, or near, your parent. It could also be a social worker or a staff person from a local Alzheimer Society or community agency that is providing services. Be sure to let these people know that you appreciate their help. Keep in mind the different viewpoints of close and distant relatives. On the one hand, you may be the first to notice a problem. Confusion or memory loss may have developed so gradually that others may not have noticed the change. On the other hand, because you are not there every day, you may not realize how difficult the situation is for the regular caregiver.
Support each other
If your other parent or your brothers or sisters are providing care, talk with them and offer your support. Try to understand each other’s feelings and points of view and talk over what can be done. Find ways to support each other and to share responsibilities.
Arranging help from a distance
Arranging for help from a distance requires planning. You may not be familiar with the services that your *parent’s community has to offer. You may have little time during your visits to arrange for care and make sure it is delivered adequately.
Here are some suggestions:
Find out what resources are available in your relative’s community. Establish contacts with a doctor, faith leader, social worker or someone in their community.
Arrange a meeting
Include your parent with the disease, his spouse, your family members and professionals who are helping. Think and talk about all the options. Recognize that your parent can feel frustrated and inadequate by his inability to make these decisions for himself. If he has little insight into his needs, the discussion should include ways of making the necessary changes easier and more comfortable. And also be sure to talk about what role each family member might play.
If your sibling or another relative is nearby, work together to arrange for help. Give your emotional support even when you are not on the scene.
Arrange for a regular check
Ask a friend or neighbor to look in on your parent and let you know if problems arise. Arrange for a daily call from a “telephone reassurance” service or sign up for Letter Carrier’s Alert, a service in which the delivery person notes whether a person has picked up his mail. Any of these may help you in knowing how your parent is getting along.
Install an emergency response system
This usually involves a device the person wears which can be used to signal for help through the telephone. The signal goes to an emergency service or a central switchboard that will immediately check on the person and summon help if it is needed. But never rely entirely on an emergency response system. Maintain personal contact too.
* The assistance provided by such a device may decrease as the disease progresses and your parent’s ability to use the device declines.
Arrange for support services
Programs such as home-delivered meals, hairdressing, homemakers, transportation or adult day programs may be available to help. If you are planning a visit to arrange services, call ahead for appointments with agency staff.
Make legal and financial arrangements
A diagnosis of Alzheimer’s disease and other dementias does not signify that the person is presently incompetent, but it is a warning that she will gradually lose mental competency. The period between diagnosis and incompetence is the time when wills and powers of attorney can be put in place. These will ensure that the ability to make financial and legal decisions on behalf of the person with dementia can remain within the family. It is advisable to discuss these issues as soon as possible with a lawyer. Together you may decide on a review of, or preparation of, a will and powers of attorney along with instructions on the use of these documents.
How can the Alzheimer Society help?
The Alzheimer Society is always an excellent resource whether you are giving care from around the corner or 2,000 kilometres away. Local Alzheimer Societies and associations across North America and around the world are aware of services available in their areas and can offer information, support and referral services.
Contact with a Society in your parent’s community will put you in touch with people who are aware of the issues of giving care. They also are familiar with the local agencies and individuals who can be of assistance to you and your parent.
Caregivers – near and far – are important. It is vital to your parent that you maintain your ability to provide care by taking care of yourself.
Contact the Alzheimer Society in your community. Your will find there are others who understand your concerns and are ready to give support and assistance.
**Since the relative needing help is often a parent, we will refer to the distant relative as “parent” and the caregiver as the “adult child.” The information also holds true for others within the family who have different relationships.
Inviting someone to move in with you
People usually want to stay in their own homes and be independent for as long as they can. But when they become worried about a parent’s well-being, many adult children ask, “Should we invite Mom/Dad* to move here?”
Advantages of a move
- You will know what is happening and will be there if your parent needs help.
- You have some control over making the environment safe and secure.
- A move may save money – the price of travelling back and forth and maintaining two households can be costly.
Possible disadvantages of a move
- By moving, the person may be leaving long-time friends and a familiar community.
- Your parent may be reluctant to become dependent on you for practical help.
- By adding a parent to your household, you and your family will face major changes in your own lives.
Questions to consider
- The following are questions to consider when you and your family make the decision about a move:
- Does my parent want to move?
- What sort of relationship have you had with your parent in the past? If it has been difficult, it will not improve under stressful conditions.
- Do you and your family want your parent to live with you?
- Will lifestyle differences between your family and your parent cause discomfort or conflict?
- Will your house provide enough space and privacy for everyone?
- Is the house safe and convenient for a person with dementia? If not, can you make needed modifications, such as an entrance ramp, or grab bars in the bathroom?
- Will your family doctor care for your parent? Is your physician familiar with Alzheimer’s disease and other dementias? Can you find a doctor willing to care for your parent?
- Will your parent have opportunities to contribute to your household if he or she wishes?
- Will your parent be able to meet others? Are there opportunities to socialize?
- Are you and your family prepared, emotionally, physically, and financially, to support your parent’s disabilities? Can you provide supervision and hands-on help with personal care when it is needed? Or can you arrange for professional help?
- Will you have opportunities for respite or relief? Can other relatives, friends or neighbours help out occasionally? Can you arrange for paid in-home companions or other temporary care?
- Will the move save or cost money? Can you afford any needed home modifications and supportive services?
- Will you (or another family member) have to give up your job or reduce your working hours, to care for your parent?
- How long do you expect the arrangement to last? Is it acceptable for a limited amount of time or as long as necessary?
- Are there facilities in your community to help you when you feel you can no longer give care in the home?
- If the move includes a change of province or country, do you know the details of the regulations regarding the transfer of health insurance, etc.?
You should consider each of these questions before you and your parent decide to make a move. Try a visit first to find out if the move will work. You might also want to explore other living arrangements that would bring your parent close to you but not require you to share households. * Since the relative needing help is often a parent, we will refer to the distant relative as “parent” and the caregiver as the “adult child.” The information also holds true for others within the family who have different relationships.