Caregiving is fraught with emotion. Along with the happiness and satisfaction that come with taking care of a loved one in need, there are also going to be moments of frustration, sadness, anxiety, guilt, and even anger in your role as caregiver. Knowing that this emotional rollercoaster is normal may make you feel a bit better, but arming yourself with some helpful strategies will make the ride a little less jarring. Here are 10 helpful hints to creating an effective strategy for coping with the demands of caregiving:
Take a snapshot of the current situation.
If your loved one has been recently diagnosed with Alzheimer's disease, take a moment to document what is happening now compared to what you have come to expect. Talk with your loved one, family and friends, and establish what used to be normal, compared to what is going on now. And remember to update this snapshot every few months or so, to keep it current. These brief assessments will not only give you a realistic view of the situation, but also provide an important tool for any healthcare professionals involved with the care of your loved one.
Seek medical advice along the way.
A diagnosis of Alzheimer's is just the beginning of a long and important new relationship with your loved one's healthcare team. Whenever new symptoms crop up, or other health-related issues appear out of nowhere, it is essential that you make use of the resources around you. The faster you can contact a healthcare professional, the better for everyone, even if it's just for your peace of mind.
Learn as much as you can, and pass it on.
The more you learn about the disease and how to manage your caregiving duties, the more confident you will feel in your new role. Talk to doctors, health and social service professionals, and people going through similar experiences. Read books and brochures, or use the internet to learn about everything from disease progression to what level of care will be needed over the course of the disease, and what resources may be available to help. Try to keep your information organized in a file folder or something similar, and make sure to spread your knowledge to those around you - it will help them understand the situation better, and may even lead to more effective support.
Assess your loved one's needs.
Figuring out what your loved one needs is essential to providing the proper care. Assessments will be unique to each person, and change as the disease progresses. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assistance someone needs, and will reveal your loved one's needs and personal preferences for care, including areas such as personal care, household care, health care, emotional care, and supervision. Contact your local branch of the Alzheimer's Society to find out the best way to begin such an assessment.
Develop a care plan.
After completing a needs assessment, it will be easier for you to formulate a care plan, possibly with help from a professional. The plan will outline a strategy to provide the best care for your loved one and yourself, and should consider both short- and long-term needs. It's a good idea to revisit the plan occasionally, as your loved one's needs will change over time. Start by listing the things you are capable of, have time for, and are willing to do. Then list those things that you would like or need help with, now or in the future. Next, list all your 'informal supports', such as siblings, children, other family, friends, and neighbours, and think about how each person might be able to help. Repeat the list for 'formal' support, such as community and professional services. Remember to include a back-up plan should something happen to you, both for the short-term and the long-term.
Take a look at the financial picture.
This can be a difficult step, but it must be addressed; it will have a significant impact on your care plan. Consider having an attorney or financial planner assist you through the process to help reduce any possible family tension, and to provide you with professional financial advice. If possible, include your loved one in this process. The idea is to gain insight into your loved one's financial assets and liabilities, and to set up a system to manage expenses in the most efficient way possible, especially if your loved one will require social assistance to manage her affairs. Be sure to read the following sections of this website for more help: Financial and legal considerations, Tax credits by province, Insurance information by province, and Financial support options (federal and provincial).
Review any legal documents.
Another essential yet delicate step, addressing legal matters should be done in the early stages of the disease, when your loved one is most able to contribute. Clear and legally binding documents ensure that your loved one's wishes and decisions will be carried out. These documents can authorize you or another person to make legal, financial and healthcare decisions on behalf of your loved one. Again, consider having a professional bring up the issue and oversee any necessary paperwork to help take the pressure off you, as well as provide assurance that you are legally prepared for what lies ahead. Please visit the following sections of this website for more help: Financial and legal considerations, and Power of Attorney.
Make the home environment safe.
It goes without saying that it is easier to prevent an accident than to have to deal with one. Of course, anticipating every eventuality is impossible, and caregivers often learn through trial and error. Aside from any training you may need in the use of assistive equipment and managing difficult behavior, there are a few simple things to keep in mind, which you can do by using the safety checklist available here.
Make connections with other caregivers.
Isolation is a major challenge for caregivers. There's nothing quite like speaking to people who truly understand your situation. Joining a caregiver support group will connect you with other caregivers looking to share social and emotional support, as well as practical information and advice about local resources and caregiving strategies. With many available online support groups, you may not even have to leave your home to participate – see our Sharing section, for example. You may also want to attend special workshops or meetings sponsored by organizations such as the local chapter of the Alzheimer's Society to meet other caregivers. Just remember – you don't have to do this alone.
Take care of yourself.
We've left the most important tip until the end. Caregiving for a person with Alzheimer's disease is stressful: caregivers are more likely than their non-caregiving peers to be at risk for depression, heart disease, high blood pressure and other chronic illnesses. And caregiver burn out is a real risk as the demands of your loved one increase. Just remember, nobody benefits by you taking ill or becoming exhausted and irritable. Make time to see friends, go to a movie or get to the gym. It may seem impossible to find the time, but it is vital to do it and not to feel guilty. To discover some practical tips for taking care of yourself, visit our Caring for caregivers page.