Dear Family Caregiver,
First, let me start by saying “Thank You” for accepting an often thankless job. Whether you willingly took on the role of caregiver or were reluctantly left with no choice, you have taken on a great responsibility. Caring for anyone comes with its challenges and rewards. Caring for someone with memory loss can multiply both. As the granddaughter of two grandparents with memory loss and a professional dementia educator, please allow me to share some advice from both sides of the situation in hopes of promoting harmony for the caregiver and the care-receiver.
1. Enter their world. People with memory loss often do not live in our reality. Many individuals with dementia experience a retrogenesis where they regress back in time to memories of their earlier life. As short-term memories fail, long-term memories are often recalled quite strongly. As opposed to trying to orient someone with memory loss to our current day reality, it is generally more helpful to enter their reality. While this is easier for some caregivers than others, look at it as an opportunity to learn about your loved one’s past and prompt them to remember fond memories of earlier times.
2. Know they are not faking it. Unlike a broken leg or a hearing aid, you cannot see memory loss. Even though your loved one may act in a manipulative manner at times, they are not faking it. There is a disease process that is eroding their brain and their ability to think, reason and act. They cannot help it, so give them the benefit of the doubt and provide them with the help they need.
3. Listen and act with your heart. As a person progresses in their memory loss, they rely less on what we are saying as a communication tool, and more on how we are communicating. Nonverbal communication signals, such as our posture, body language, tone of voice, proximity, cadence of speech, etc. all speak more to our loved one with dementia than our actual words. In addition to this, we need to be mindful of our frame of mind and how it impacts our nonverbal communication when interacting with our care receiver. For instance, being in a rush increases our anxiety, which can inadvertently be communicated nonverbally to our loved one, and will often backfire to create added stress to get out the door on time. Try taking some deep breaths to relax a bit before approaching your loved one calmly and pleasantly to set up a more positive care relationship.
4. The roles, they are a-changing. Perhaps your mother used to be your sage adviser; your father your rock of strength. As memory loss robs your mother of her wisdom or your father of his strength, all parties must find their new roles and a new normal.
5. Mourn the loss. All of this change can be hard and with an often demanding role as a caregiver, you may be too busy to dwell on changing relationship dynamics, or perhaps too emotional. Allowing yourself moments to feel sadness and mourn the loss of your loved one as you knew them can go a long way toward enabling you to make peace with the current situation and allow you to continue as their caregiver.
6. Be open to new relationship dynamics. All too often, your loved one with dementia may become confused as to who you are or to your relationship. Perhaps as an adult son who looks like his father, your mother with memory loss views you as her (former) spouse. Or maybe your father has an emotional memory of attachment to you in your nurturing state as his caregiver and believes you to be his mother. It is not always necessary to argue or correct them. Perhaps this new dynamic gives them comfort and makes your role as caregiver easier. Understand where it comes from and that each day you might have to be flexible in the role you play. This might even create an opportunity to deepen your relationship in a meaningful way.
7. Honor their former wishes. Sometimes it is necessary to make difficult decisions as a caregiver. Perhaps you are fortunate and your loved one prepared legal documents in advance specifying their wishes, such as who is authorized to make decisions on their behalf when they are no longer able, or how they feel about artificial nutrition or hydration, or end-of-life issues. Unfortunately not all families have made these decisions ahead of time or prepared the necessary documents to implement them. In the absence of such paperwork, let your loved one’s personal, cultural and religious preferences be your guiding light. What would they want done if they were capable of making such decisions?
8. What works today may not work tomorrow. The progressive decline of most dementing illnesses is like going down a set of stairs. Over time, a person may take a step down and lose some of their former abilities or require more help. In addition, people with memory loss experience good days where there is clarity and a seeming improvement, and bad days where things just don’t click. All of this can add up to a frustrating experience for both the caregiver and care-receiver. When you find a system that works, use it every day that you can, but realize that it may not work every day and sometimes adaptation will be necessary. Expecting this hazard can lessen the frustration somewhat and prevent the caregiver from placing blame on their loved one with memory loss.
9. Don’t do for them what they can do themselves. “Use it or lose it” is a prevalent issue in caring for someone with memory loss. Doing for someone what they are capable of doing themselves creates learned helplessness and, essentially, promotes a faster loss of ability. Enable the care-receiver to continue to do for themselves what they are capable of, even though it might take a bit longer or be a bit messier. In the long run, it promotes continued independence and dignity. Set them up with the tools they need for success, provide verbal and visual cues and praise their efforts.
10. Just go with it. Rule #1 in dementia care: You will not win an argument with someone with memory loss. You may have to adapt, be flexible, play a role, get creative, go back in time, commit to being wrong, or whatever else is required at any given time. Be willing to bend so you don’t break.
11. Seek support. Being a caregiver is hard and it can be draining of your energy. Call in support and utilize resources to replenish your energy reserves. Perhaps that means calling a sibling to take a shift, hiring professional caregivers to help with certain tasks or considering a respite break. Maybe you need to recharge your battery through a support group, online support community, spiritual guidance, meditation, or time away to pursue a favorite hobby. Take the time you need to care for yourself. Both you and your loved one(s) depend on it!
12. Give yourself a break. And credit! Your loved one may not be able to express their gratitude to you in their current state, but deep down you know their former self would have appreciated your generous task of caregiving. Relish the occasional moments of gratitude that your loved one may show you and hold the relationship, both in its current and former dynamic, dear. When your loved one is no longer in your care, you will be grateful that you were able to spend this time together.
Administrator of ProMedica Goerlich Center for Dementia Care
Join Tara in a Senior Caregiver Information Session for communicating and caring for loved ones with memory loss Nov. 11 at ProMedica Flower Hospital. For more information about the event and registration, please click here.