- To cope with a spouse with dementia, try to accept that your marriage will change: you may have to take on the responsibilities of running your home and caring for your spouse.
- Try not to take their behavior personally, but go easy on yourself for feeling frustrated, for resenting your spouse, and for grieving the loss of your old life together.
- Taking care of a spouse with dementia is hard, and you don’t need to go it alone. Reach out to support groups as well as friends and family for help, and take breaks every day.
Taking Care of Yourself
Go easy on yourself if you feel resentment. The stress of caretaking a spouse with dementia may sometimes make you feel resentful or even as if you hate them. This is common, and understandable: when you said your vows, you probably didn’t plan on needing to take care of your partner completely. You likely envisioned a relationship in which you both put in equal amounts of work and when this doesn’t happen, resentment can grow. Feeling angry and resentful of the situation is normal, but if you let those negative emotions become directed toward your spouse, you will likely make your new reality even worse. Instead of getting mad at your spouse, get mad at the disease. Try writing about your feelings in a journal, and try to give yourself breaks when you need them to avoid becoming too overwhelmed or burned out. Your spouse may say things that hurt your feelings. Try to remember that their reality has changed due to the disease, and although you can clearly tell what is real, your spouse cannot. Try to learn over time when "the disease is talking" to minimize your own feelings of anger or resentment.
Take time for your hobbies. Caregivers commonly lose touch with activities they enjoy, as they often feel they don’t have time for anything else except looking after their spouses. In addition to adding to the level of resentment you may feel, depriving yourself of activities you enjoy can also negatively affect the way you take care of your spouse. Make time to engage in your hobbies, even if it means asking someone to relieve you for a few hours a week so that you are able to participate. Taking care of your mental, emotional, and spiritual needs is just as important as caring for your spouse. Fortunately, many hobbies can be enjoyed without even leaving the home, such as reading, knitting, yoga, painting, meditating, and spending time with growing grandchildren.
Be patient with yourself as you learn new skills. Taking care of your spouse is likely a new challenge on its own, but if your spouse used to handle certain household chores and responsibilities—like cooking or paying bills—you may have to learn how to do these tasks. It can be overwhelming and frustrating, especially when you're first starting, but have patience with yourself, and don't expect everything to be perfect from the start. It'll likely get easier as you adjust. You may also ask family members or friends for help figuring things out at the beginning. They may be able to guide you through specific tasks or even take on some of your responsibilities while you adjust.
Forgive yourself for not being able to do it all. You are only human, and there may come a point when you can't care for your spouse all on your own. That's OK. Try to practice self-compassion, and remember that seeking additional support isn't just good for you, it's also good for your spouse. Additional help may mean asking loved ones to help out now and again, or it may mean relocating your spouse to a facility where they can get 24-hour care. If you do move them to a care center, you'll still be able to visit them regularly.
Exercise to relieve stress. Exercising can help your emotional and physical well-being, which is beneficial to both you and your spouse. Spending just a few minutes a day walking, running, doing tai chi or yoga, or riding a bike can make you feel better emotionally and physically. You may be able to exercise with your spouse during the early stages of dementia, which gives you a chance to connect with your spouse and support their physical and mental well-being. Self-care in general is one of the most important things a spouse needs to do when they become a caregiver. Some spouses feel guilty because they cannot manage everything. Keeping yourself healthy is the best thing you can do to help your spouse.
Consider seeing a therapist. Caregivers are often under constant stress and pressure, and it is common to experience depression and anxiety because of it. Experiencing grief over your changed spouse may also cause you to feel down. Talk to a doctor about seeking therapy to help treat your issue. Doing so will enable you to be in better mental health to take care of your spouse. In some cases, prescription medication may help you cope better with the pressures of caretaking an ill spouse. If you believe medication will benefit you, consider talking to a therapist about their recommendations.
Getting Help and Support
Ask friends and family for help. Taking on the role of caregiver is an overwhelming and stressful concept for many spouses. However, understand that it is OK to ask for help. You don’t always have to do everything on your own, and asking for help from your children, friends, siblings, and in-laws isn’t a sign of weakness. Something as simple as asking someone to make you dinner once a week or helping you clean your home can make a huge difference in your emotional well-being. Chances are, your loved ones will be more than happy to help. Reach out by saying, “Hey, dear, I know you have a lot going on, but I could use some help with your dad. Could you come by one day this week and sit with him while I run errands?”
Join a support group. No one understands what you are going through better than those who are experiencing it themselves. Joining a support group allows you to talk freely about all of the emotions you are feeling and receive feedback and encouragement from those who are in the same place as you. You don’t have to worry about receiving criticism or judgment from those in the support group, so you may be able to discuss exactly how you feel about these changes and your new responsibilities for the first time. An in-person support group may be most beneficial, but you can also connect with other dementia caretakers online. There are groups centered on specific conditions, such as the Alzheimer’s Association virtual support group for caretakers of people with Alzheimer’s, as well as groups centered on specific types of caretakers, such as Well Spouse, a group for people taking care of their spouses.
Hire a professional caregiver if needed. It is not a sign of weakness to ask for help from a professional. Along with caring for yourself, you now have to take care of someone who is likely difficult, emotional, and physically and cognitively impaired. Hiring a caregiver to give your spouse a bath, prepare meals, give medical care, and perform other tasks can help take some of the pressure off of you. Depending on your spouse's needs, you may need to seek medical treatment, home modifications, prescription drugs, personal care supplies, adult day services, in-home care, or full-time residential care. Insurance (including Medicare or Medicaid), veterans benefits, employee and retirement benefits, and personal assets (like savings, investments, and property) may be able to help finance caretaking services. Talk to your primary care provider for care recommendations or reach out to family and friends who may have gone through similar experiences as you. You can also check out Medicare’s Home Health Compare tool or Eldercare to find care in your area. Organizations dedicated to your spouse’s specific condition may have additional resources for finding a caretaker in your neighborhood. For example, if your spouse has dementia due to Alzheimer’s, you can use the Alzheimer’s Association chapter locator to find your local chapter and discuss your options with them.
Adjusting How You Look at Your Spouse
Accept that your marriage will change. Know that your marriage will not be an equal partnership anymore. Eventually, you will have to take on all of the responsibilities of managing your household, caring for your family, and even helping your spouse with the smallest of tasks. Your role as spouse will gradually transform into the caregiver, or even “parent” in the relationship. For instance, you will likely have to do all of the household chores, make all of the decisions regarding your family and home, and provide constant supervision of your spouse.
Learn all you can about the type of dementia they have. Educate yourself as much as possible about the particular form of dementia that your spouse has. Knowing what to expect going forward goes a long way in preparing you for the different stages as they occur. Alzheimer's is one of the most common causes of dementia in older adults, but many diseases and conditions can cause dementia, including Huntington’s disease, traumatic brain injuries (TBI), Creutzfeldt-Jakob disease, or Parkinson’s disease. Dementia may present differently from person to person and illness to illness, and it may get more or less severe over time. Dementia may be cognitive or psychological: Cognitive dementia often involves memory loss, confusion, problems concentrating and problem-solving, trouble communicating, spatial or visual trouble (such as getting lost while driving), and/or poor coordination and movement control. Psychological dementia is frequently marked by personality changes, depression, anxiety, agitation, paranoia, inappropriate behavior, and/or hallucinations.
Try not to take your spouse’s behavior personally. People with dementia often take on new personalities and may lash out at their spouses and caregivers unintentionally. Not taking these behaviors personally is difficult, but necessary. Understanding the cause of the aggressive behavior may help you to not become offended by your spouse, and help them in the process. Try to determine what is really making your spouse upset, as they may not always communicate it explicitly or politely. This is where really knowing your spouse comes in handy. For example, your spouse may not appreciate being fussed over. Instead of arguing if they say so rudely, try to shift the focus away from the matter, while speaking in a calm and reassuring voice. If your spouse says, “I really don’t need you standing over my shoulder all day long. Go away,” rather than arguing, say, “I’ll give you some space, then. But you can expect me to check in on you every half hour.”
Expect emotional and physical intimacy to change. Because of the cognitive decline of your spouse, you may not be able to experience the emotional and physical intimacy you once did. Along with physical impairments, your spouse may become depressed, which can also affect their sex drive. Additionally, you may not feel attracted to your partner anymore because of the changes to their behavior. Try not to feel guilty about this loss of attraction, but know that it’s OK to grieve the loss of that connection. Still, there may be new ways for you both to connect. New ways of connecting may include reading books together, going for walks, talking, and experiencing things together that you couldn’t before due to other obligations. Take advantage of all the time you spend together.
Focus on the positives. Although lots of things have changed since your spouse developed dementia, if you think about it, much is also the same. Perhaps your spouse always had a sideways grin when they were caught doing something naughty like drinking from the milk carton. Or, maybe your spouse still dances wildly to their favorite music like they did when they were younger. Take note of these small ways in which you still have your spouse rather than focusing on all that you’ve lost. Being positive also means being optimistic about the future. Dementia is not a death sentence. Many people continue to lead healthy, fruitful lives with this condition. Of course, some modifications may need to be made, but your spouse can likely continue to engage in many activities that they once enjoyed.
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