Caregivers are amazing, selfless people who would do anything and everything they can to care for a loved one with Alzheimer’s disease or another form of dementia. However, providing care for a loved one with dementia can be exceptionally draining for caregivers in terms of time, emotions, and effort. Caregivers need support, and as recent studies have shown, intensive support for caregivers greatly improves their quality of life, and even minimal support can improve quality of life. As a caregiver, it’s important to realize that you are not alone. Please note, if you are feeling anxious, overwhelmed, or depressed, talk to your doctor. There is help available.
Given all of the stress that a caregiver faces, it should be no surprise that a whole host of emotions build up. Generally, these feelings are directed towards the situation, or even the care recipient, and may include frustration, denial, grief, anger, embarrassment, guilt, worry, and many others. Many caregivers feel guilty when they feel overwhelmed. Many feel they aren’t doing as good of a job as they should. Remember, there is no “correct” way to provide care. After all, you likely know your loved one’s needs better than most individuals, so find the way that works best for both of you. Below are some general tips for dealing with the negative emotions caregivers so often face.
Regardless of whether you are feeling frustrated to the breaking point or brought to the point of tears, allow yourself to express your emotions. You do not have to lash out at anyone. Simply leave the room and scream into a pillow or sit down and have a cry. Bottling up your negative emotions or denying them is never the answer. Sometimes expressing an emotion, such as grief, followed by making a list of things in your life for which you are grateful, can be helpful.
In addition to expressing your emotions in private, it can be helpful to honestly express your emotions with someone else. Whether it is in a support group or via a one-on-one conversation with a close friend, voicing what is troubling you to another person helps. Even if there are no definite solutions, simply sharing your thoughts and feelings means that less of the burden is yours alone. If other solutions are not helping, consider talking to a professional counselor.
Consider why and when your negative emotions arise. Are your expectations for yourself, your loved one, and the care you are providing realistic? Are there certain situations that especially try your patience, or moments when you can no longer deal? Are you taking it personally when your loved one acts out in anger or refuses your help? It may be impossible to avoid facing negative emotions, but you can change how you deal with and think about them. Remind yourself that your loved one’s behavior is not purposeful and you should not take it personal; it is the disease. Focus on the actions that you can take to make things better in the present moment. Recognize that worry over things you cannot control does not solve anything. If your usual coping mechanisms and the tips found here are not enough, and you find yourself depressed or overwhelmed, consult your physician or a mental health professional. Sometimes medications, such as antidepressants and those used to decrease anxiety, may be recommended.
While it may seem like one more thing to worry about, setting a schedule for the day, the week, or the month can be both helpful and an eye-opener. You quickly will be able to reference all the various chores, events, and appointments that need to be accomplished for your loved one and yourself. You will also be able to more easily find those empty blocks of time where you can plan in advance to create time for yourself. Finally, you will be able to recognize what activities or chores another friend or family member may able to assist with and ask them in advance.
It is important that you find time to get away from the house if your loved one lives with you. Whether you go out to dinner with your spouse, take your grandchildren or children to a movie, or go for a solitary run in the park, time away from your loved one can give you the breath of fresh air you need to keep going. If you do not have friends, family members, or neighbors that can provide care for your loved one while you are away, seriously consider using some form of respite care.
If you live at home with your loved one, it is also important that you find personal, private time away from him or her at home. If need be, find time before your loved one awakes or after he or she goes to sleep to sit down and enjoy a book, pursue a craft, play a musical instrument, pray, meditate, or write a blog or journal. Remember, your home should be a caring place for you as well.
Regular exercise is one of the most important ways to manage stress. Even 15 minutes a day, just 3 times per week can make a difference. Ideas for fitting exercise into a caregiver’s life include using a treadmill in the home or going for a quick walk when a nurse or respite worker comes to the home. Regular exercise is even thought to delay the onset of dementia, so if your loved one is able, consider taking a walk around the neighborhood together.
Finally, it is important to create moments during the day or week when you have meaningful and positive experiences with your loved one. These special events / activities need not be extraordinary. Choose an activity that you enjoyed together before the diagnosis, such as baking, going to the beach, or singing along to the radio. Remember these positive peaks when you are feeling burnt out.
When a partner, parent, or another loved one is diagnosed with dementia, friends and family members may not understand what is happening to the person they knew or how this might change their relationship. The need to constantly explain the “situation” to others in your family can be frustrating. However, by educating your friends and family as to what to expect from your loved one and what you both need in terms of care and support, you are better equipping them to participate in providing care.
When you need help and support as a caregiver, approach friends and family members with specific tasks or times in mind in which you need assistance. For instance, if you have a sibling who lives nearby and you know that your loved one needs to go to the doctor on Friday, ask if she / he could take your loved one to the appointment. This will allow you to run other errands or have a break from your caregiving duties. Also, if family members are visiting from far away, you might consider asking them to spend quality time for a day or two with your loved one so that you can get away. Often all you need do is ask a friend, neighbor, or family member for assistance, and you will be surprised by how many people are willing to help. Just as you are supporting your loved one, allow yourself to be supported by your loved ones and those around you as well. Even if you don’t feel you have a network of friends and family that can support you in caring for your loved one, there are a variety of respite and community care options that are available to aid you in your caregiving.
Special occasions can be awkward times for individuals with dementia. Visiting family and strangers, new smells and sights, and a lot of people and activity can make such events confusing and frustrating for them, leading to emotional outbursts. Additionally, visitors may be surprised and disappointed at what they perceive as the changes in their loved one and in traditions. It is still possible to have gatherings, special events, and holiday gatherings, but there are some things you can do beforehand to ensure that they run as smoothly as possible.