When your partner has Alzheimer’s, your own risks for mental and physical problems go up. Even more so than for caregivers of other conditions.
Experts say that’s because caring for someone with dementia like Alzheimer’s is more intense than other types of caregiving. You’re also likely to care for them more hours every day and for more years than those caring for loved ones with other issues.
But there’s help for dealing with these challenges while also taking care of yourself.
Alzheimer’s Caregiver Stress
If you fly on commercial airplanes, you’ve probably heard flight attendants say to put your oxygen mask on before helping someone else put on theirs. The same philosophy applies to you as a caregiver.
Because studies show the healthier and happier you are, the better you’ll be able to help your partner with Alzheimer’s.
One long-running study found that being better informed about the disease, going to individual and family counseling, and having a strong support system can lower your chances of depression and improve your overall well-being.
These interventions were also linked to being able to keep your partner at home longer.
Some studies found that among caregivers for all conditions, some don’t feel high levels of stress or burden. They may even report benefits like feeling a sense of purpose and being needed.
But caregivers of partners with Alzheimer’s seem to have a harder time.
They’re more likely to experience high levels of stress and negative impacts on overall well-being. Even so, they may be unlikely to practice self-care. This can lead to serious problems.
A survey of Alzheimer’s caregivers found they were most stressed by:
- Financial strain
- Fear their loved one will get lost
- Effects on family vacations
- Balancing family responsibilities with responsibilities of caring for their loved one
- Reduced time with their family
Financial strain may develop from the amount of time your loved one needs, as that can impact your ability to work and earn a living. Things like lost wages, or loss of Social Security or pension benefits, can leave caregivers struggling to make ends meet.
Your risk for mental health issues also goes up. Research shows that Alzheimer’s caregivers are more likely than other caregivers to have depression, anxiety, and a poorer quality of life.
Among the physical health problems you’re at greater risk of having are high blood pressure, high blood sugar, weight gain or loss, and sleep disorders. Some research suggests you’re also at greater risk for developing cognitive decline and Alzheimer’s yourself.
Caregivers at most risk for reaching stress levels that impact their well-being are:
- Caring for a person with Alzheimer’s for many hours each day
- Living with the person for whom they’re the caregiver
- Socially isolated
- Having financial problems
- Clinically depressed
- At a low education level
- Not equipped with coping skills
- Without many options such as help from their family or friends
Self-Care Is Key
While you’re at increased risk for health-related problems as an Alzheimer’s caregiver, there are some things you can do to help prevent them and boost your well-being.
Those include following a healthy diet, getting daily exercise, practicing gratitude, getting enough sleep, and staying connected to others.
Experts say it’s also important to set limits on what you can do, take regular breaks from caregiving, socialize with others, and find ways to laugh often.
In other words, it’s important to take care of yourself, even when the going gets tough. Be sure to:
- Get your annual physical, contact your doctor about any health concerns, and don’t put off mammograms, colonoscopies, or other health screens.
- Exercise and eat healthy foods you enjoy. Taking brisk walks regularly can lower your blood pressure, trim your body fat, increase your energy levels, improve your immune system, and reduce your stress. These are just a few benefits of exercise.
- Make time for hobbies and activities that make you feel happy.
- Seek help from professional experts like lawyers or accountants to help with tasks you may be unfamiliar with doing.
- Join a virtual or in-person support group. Weekly support groups led by people who understand the stress involved in caring for a spouse with Alzheimer’s are held in many areas throughout the country. You’ll learn about best practices in caregiving and how to deal with unique problems. And just talking with others who are going through a similar situation may help you feel better.
The Emotional Side of Alzheimer’s Caregiving
When your significant other has Alzheimer’s, you may feel like your world has been turned upside down. Things you enjoyed doing together may no longer be possible, and the way you interact may change. You probably find yourself taking on new and unfamiliar responsibilities.
Caring for your partner may feel like a heavy burden. Research shows that feeling is likely to increase as their disease progresses.
You may feel helpless. You might also feel resentment toward your partner, followed by guilt for feeling that way. But experts say that’s normal and to be expected.
In fact, it’s normal to feel a wide range of emotions on your caregiver journey. Not only are your feelings valid, but experts say it’s important to not ignore them.
Along with resentment and guilt, some common emotions for Alzheimer’s caregivers are ambivalence, sadness, boredom, crankiness, disgust, fear, frustration, grief, jealousy, embarrassment, loneliness, and tiredness.
Studies show these emotions may become more intense as your partner’s symptoms increase and they become moodier or more aggressive or forget who you are. Symptoms like these can make caregiving tougher and make your relationship seem less satisfying.
But experts suggest reminding yourself about the stress you’re under. Take time to congratulate yourself on taking care of your partner.
Some of the most common emotions for Alzheimer’s caregivers and ways to cope with them include:
Guilt. You may feel guilty about past arguments with your partner. You also might feel guilt about wanting to have more time for yourself. Or maybe you feel guilty about putting your partner in an assisted living facility when caregiving gets too difficult.
Experts say it’s important to remind yourself no one is perfect and you’re doing the best you can. Remember that difficult decisions have to be made sometimes.
Grief and sadness. Grief is different for everybody, and it may or may not get better over time. You may feel grief and sadness about:
- The loss of the person you knew and loved
- The life you had imagined is no longer possible
- A change in your financial circumstances because of loss of your job, health insurance, or the high costs of professional help. Between lost wages and the loss of Social Security and pension benefits, caregivers often struggle to make ends meet.
Experts say allowing yourself to feel grief and sadness when your partner has Alzheimer’s is key to promoting your own emotional well-being.
Anger. This common emotion for all caregivers is prevalent in those caring for a partner with Alzheimer’s. You may feel angry or frustrated about:
- Your spouse or partner’s condition and how that influences their behavior
- The time you spend caring for them
- Missing out on activities you once enjoyed
- People who aren’t providing the help you need
If you’re struggling with caregiver-related anger, experts say it’s important to forgive yourself. Find ways to walk away when you feel stressed. They also recommend finding someone you feel safe sharing your feelings with.
Frustration. Sometimes, you might feel like you can’t do anything right. Or maybe things don’t go as planned. If you’re tired, you’re even more likely to get frustrated. This might cause you to stress eat, drink too much alcohol, or lose your temper.
Experts recommend joining a support group to learn ways other caregivers cope with frustration. Try to take breaks from caregiving to refresh your energy. Also get regular exercise and adequate sleep.
Lack of appreciation. This feeling is common when your partner resists your efforts to help.
It can hurt when they don’t thank you for all you’re doing for them or they don’t seem grateful for your help. But for many people it can be uncomfortable to receive assistance. This can be more so when they have dementia.
Experts suggest learning to pat yourself on your back for all you do for your loved one. Keeping a journal may help, where you list the daily tasks you do and then review them to feel a sense of accomplishment. It may also help to join a support group or talk to those close to you about your feelings.
Is Maintaining an Intimate Connection Possible?
It’s common for people with Alzheimer’s to have a change in their sex drive. That’s also common for their caregivers. That may be because you’re exhausted or sad. In addition, you may both feel emotions such as loneliness and frustration that make it tough to remain interested in sex.
But an Alzheimer’s diagnosis doesn’t mean your intimacy is over. There are some ways to help stay connected even when communication has waned. Here are some things that may help:
- Look at old photos and talk about the good times you’ve had together, such as family reunions or fun vacations.
- Listen to music that reminds you of good times.
- Touch your partner in non-sexual ways like hugs, massages, or dancing.
- Take time out of each day to be alone together.
Don’t Withdraw or Isolate
Your friends and family may not be sure how to support you. Or you might not want to burden them with your troubles by asking for help. Sometimes they may not agree with your decisions, and that might lead to friction. But remember that no two people do things the same way.
Experts say it’s important to maintain your connections. You might:
- Call, exchange text or chat messages, or plan gatherings with your friends and family regularly.
- Host a family meeting or write your loved ones a letter or email to keep the lines of communication open and help them feel like they’re involved.
- Encourage your partner’s friends to stay in touch too, and suggest ways they can maintain their connection.
- Ask for help. It’s OK to give them suggestions about what you need, whether it’s a conversation, a ride to the doctor, or a home cooked meal.
Getting Outside Help
Caring for a partner with Alzheimer’s is hard physically and emotionally. You can’t do it alone. Even the toughest person needs help at times, and often an expert is often the best person to provide it. Some things to consider are:
- Adding adult day care services or home health care workers to your loved one’s care team. Eldercare Locator can help you find providers who serve your area. Research suggests that regularly using adult day care services for your partner with Alzheimer’s can protect you against stress and keep you healthier.
- Talking to a mental health professional or a social worker. They can help you deal with unwanted feelings like anger or sadness. They can also help you plan for the future.
- Checking to see if your loved one is eligible for home health services through Medicaid or other government programs. If your partner has health insurance, ask their provider which services it covers.
- Asking your insurance company if they provide telehealth services. It varies by provider, but many companies now cover telemedicine or virtual appointments done over the internet.
Planning for the Future
It’s a good idea to have a plan for your partner’s care in case you’re no longer able to care for them because you get sick, become disabled, or pass away.
You’ll likely be their caregiver for years. In the U.S., more than half of people caring for loved ones with Alzheimer’s or other forms of dementia did so for 4 years or more, according to the CDC.
While you might be healthy and able to care for your partner today, it’s important to be prepared in case your situation changes. Experts recommend that you:
- Talk with a lawyer to set up a living trust. Create a durable power of attorney that covers medical and financial matters. A power of attorney starts when you sign it and remains in effect if you become unable to make decisions about medical and financial matters.
- Keep a notebook that includes important phone numbers and tips in case another caregiver has to take over. Include things that make your partner feel better, their favorite foods, and their current behaviors. Keep it in an easy-to-find place, and share it with your family and friends.
- Ask your family members and friends for help deciding who’ll make decisions for your partner if you’re no longer able.
- Visit nursing homes and long-term care facilities in your area. In your notebook, write down the ones you like and why. Share this with your other family members or close friends.