Caring for someone with dementia can be a complex task. It can be frustrating, confusing, and emotionally and physically exhausting, though it has its rewards and good times. Whether you’re a family, volunteer, or paid caregiver, if you’re the only one providing care, you may wish to get help at some time.
“Please don’t ever feel you are alone. Use the support systems that are available…Don’t shut people or support out.” – Jane (pictured above), from Newmarket, Ontario. Jane is a caregiver for her mother, Eileen, who lives with Alzheimer’s.
You may feel you need the support that comes from sharing thoughts and feelings with others. Some days you may need a “sympathetic ear,” someone who will listen and not judge. Other days you may need a safe place to “vent.” Friends and family can help, or you may find it useful to talk to others who have lived with or worked with caregivers.
A support group can give you a place to talk with other caregivers who understand the disease and know just what you are going through.
It gives you an opportunity to share your own experiences, get practical suggestions that can help you in your daily caregiving while letting you help others. A support group can also help you manage stress and feel less isolated.
Some groups are targeted to spouses or adult children. Contact your local Alzheimer Society for a list of support groups in your area.
Not everyone is comfortable participating in a group. Sometimes, talking one-on-one to someone who has gone through the experience of caring for a person with dementia (peer support) can be very helpful.
It can also be helpful to talk with a trained professional or counsellor. You may find counsellors or peer support through your local Alzheimer Society or look for a social worker through your public health department, health centre or family service agency. Your family doctor may also know of counselling resources in your community.
Another way to look after your emotional needs is with humour. Humour can work wonders by helping you cope with caregiving demands. Some days it will be possible to laugh, others it may not be. Look for the humour in day-to-day situations. See a funny movie. Laugh with friends.
To continue caregiving you will need to organize respite care: a break, a chance to do something for yourself, to get away from the demands placed on you.
Regular relief can help to rejuvenate your mind and body by giving you a break, as well as providing you with practical support. Asking for that help, however, can be a hard thing to do. You may feel that you are imposing on others, or that you are the only one who can — or should — provide care to the person with dementia. The reality is that no one can provide care alone. Taking time for yourself now — even if it is for an hour or two — can help you be a better caregiver when you return.
If you don’t have family members or friends to give you a hand, you may be able to find a volunteer through your local place of worship or community centre.
In-home respite programs bring trained individuals into your home to provide care. Depending on the program, the worker may provide companionship, assistance with personal care (bathing, dressing), help with housework, etc. Check with your local Alzheimer Society about programs in your area.
Many communities have adult day programs. In these, the person with dementia can participate in a broad range of activities and have a chance to socialize with others. These programs usually include a meal and transportation, and may be available half days, or from one to five full days a week.
Some long-term care facilities have respite beds, so caregivers in the community can get some relief. Ask your local Alzheimer Society for information about where to find more about respite programs.
To make caring for someone with dementia at home easier, get help with some of the day-to-day activities and tasks. This can include personal care, cleaning, meals, household chores and taking the person to appointments.
Start by making a list of all the tasks that need to be done, including personal care, shopping, yard work, transportation and housework.
You may be able to get help from family members, neighbours, volunteers or agencies. Some help may be available through the Home Care program in your area at no or low cost. Contact your local Alzheimer Society for more information on services available in your area.
Services that can help include:
Every community has agencies and services that can help you.
Services for the elderly and their caregivers vary in different provinces, territories and regions.
You can find out what services are available in your community from a number of sources:
Helping Family and Friends Understand Alzheimer’s Disease
When you learn that someone has Alzheimer’s disease, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Realize that people often sense when something has changed. By sharing what is happening, family and friends can help support you and the person with Alzheimer’s disease.
There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:
Tell friends and family about Alzheimer’s disease and how it affects memory, thinking, and behavior.
Share articles, websites, and other information about the disease.
Tell them what they can do to help, such as calling the person with Alzheimer’s disease, providing meals, or helping with home repairs or safety modifications.
When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. For tips on helping children cope when a loved one has the disease, see Helping Kids Understand Alzheimer’s Disease.
Tips for Communicating
You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:
Help family and friends realize what the person can still do and how much he or she still can understand.
Give suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask family and friends to respond to the feelings expressed or talk about something different.
Help family and friends plan fun activities with the person, such as family reunions or visiting old friends. Video calls can be a great way to connect, too. Viewing a photo album together can help if the person is bored or confused and needs to be distracted. Family and friends could also create a care package or make a photo album or video to send to the person.
Remind family and friends to:
Call or video chat at times of day when the person with Alzheimer’s is at his or her best.
Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
Respect the person’s personal space, and don’t get too close.
Encourage a two-way conversation for as long as possible. Be patient when someone has trouble finding the right words or putting feelings into words. You can help them but try not to speak for them.
Try not take it personally if the person does not remember you, is unkind, or gets angry. He or she is acting out of confusion.
Get more tips on communicating with someone with Alzheimer’s disease.
When You’re Out in Public
Some caregivers carry a card that explains why the person with Alzheimer’s might say or do odd things. For example, the card could read, “My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.”
The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.
WHAT ARE COMMON CHANGES THAT MAY AFFECT DYNAMICS?
Knowing which changes to expect and the effects of them can help you and your family to navigate the changes in dynamics better when the time comes. The following changes have been known to disrupt structure and impact families.
Reversal of Roles. When someone we love is diagnosed with Alzheimer’s and you or another family member will be serving as the primary caregiver, it’s important to realize that there will be a period of grief and loss. This usually occurs as a result of feeling like you are losing the person you used to know or the relationship you used to share. This can affect caregivers and family members, as well as your loved one, who sees the effect their diagnosis has on everyday life.
Increase in Guilt. Many caregivers and families tend to feel guilty about any number of things. They may feel guilty that they aren’t sure what they are doing or that they aren’t doing enough. They may simply feel guilty that they are tired and need a break and can’t provide the care their loved one needs.
A Shift in Priorities. Because of the changes that Alzheimer’s disease causes, priorities will shift from everyday activities and move to your loved one’s care. This means that a caregiver potentially may need to give up their full-time job, free time and hobbies.
Changes in Emotions. Caregivers are not the only ones who face difficult feelings. Consider how other family members are feeling. Are they being kept in the loop enough? Do they know what’s going on? Do children and teens understand why their loved one is acting this way? How are they feeling through all of these changes?
A Growth in Uncertainty. As if life wasn’t uncertain enough, Alzheimer’s steps in to make it worse. You may find that plans you had may have to change and that you won’t know what each day will bring, which will make planning in everyday life much more difficult.
More Disagreements. If you and your family members don’t quite see eye-to-eye on how to best care for your loved one, it’s important to work those disagreements out and try to see each other’s point of view. It may be helpful to seek assistance from a professional if you cannot get past certain conflicts.
These feelings are normal and it’s important to realize that you are not alone in this. If you need help – ask. Whether that means talking to friends and family, taking a break to do something for yourself, or asking family members to do a few things for you . . . anything can help.
A GUIDELINE FOR NAVIGATING CHANGES IN FAMILY DYNAMICS
In order to cope with the change in dynamics, it’s important to face everything as a family with open communication, understanding and compassion. This battle is different for everyone, so it’s important to do what you can to help one another. To help you navigate the changes, keep some of the following points in mind.
Adjusting will not happen overnight. Just because you now know about the disease and have a plan in place doesn’t mean you know everything there is to know. Alzheimer’s disease affects families and their loved ones differently, so your “normal” may change multiple times through the course of the disease. Take time to adjust and give yourself – and other family members – some grace.
People generally work better in numbers. If you or another family member need help with caregiving tasks, ask for help or step in to help. Is a family member having an emotionally hard time dealing with the diagnosis? Reach out and help them. Are household tasks getting put on the backburner? Take some time to help them clean.
Make sure everyone is on the same page. Again, communication is key. If your loved one is getting worse, tell your family. If there is something they need to step up and do, ask your family to help with it. If you learn something that makes your loved one with Alzheimer’s feel better, share that with other family members. Be a team and communicate to be better caregivers.