This guide is to show how you can support a caregiver, family member, or a friend who is struggling with seeing their loved one experience a cognitive decline. God is the orchestrator of life. From the beginning of life to the end of life, this is where we start our journey. As we age, there will be shifts, emotionally, physically, psychologically, spiritually, and medically. Support comes in various forms through each of these different shifts.
Step 1: Acknowledge that you cannot do it alone. God never designed us to “do life” alone. Supporting a loved one who is experiencing a cognitive decline is difficult. Yet, it is possible. Acknowledge that you need God and a community of people who care about you to help you navigate the road ahead.
Step 2: Identify the Cognitive Decline and Acknowledge It. When someone is experiencing a cognitive decline, there are gradual changes you will notice regarding their memory and behavior. Do they get lost on their way home? Do they constantly lose their keys? Do they get easily disoriented and confused? These are signs that need to be acknowledged and explored. Sometimes family and friends might notice these changes but are embarrassed or too scared to say something. However, there is nothing to be ashamed of. The sooner you acknowledge what is going on, the sooner you can get the support you need to help your loved one.
Step 3: Educate Yourself. Learn about the clinical changes of their memory loss, to get an understanding of what you might experience now, in six months and long term. You might feel more comfortable researching this online at first. A few trusted site that you can go to for information is the National Alzheimers and Dementia Resource Center, the National Institute on Aging, and the Alzheimer's Research and Resource Foundation. Identifying a professional doctor or specialist who works in this field can also offer you additional insight that can help equip you to navigate your days ahead.
Step 4: Identify Your Village. It is the key to support your loved one. The earlier, the better. Your primary care provider, family members, a caregiver, neighbors, social workers, and your faith community can all be a part of your village. Each member of your village can offer support to your loved one to ensure they can navigate this season with grace, dignity, and integrity with the best possible outcome.
Step 5: Have an Honest Conversation. It’s essential to have an honest conversation with the loved one about their cognitive decline. This can be hard to do but you can do it in a way that still allows your loved one to have a level of control through this process. You might start by asking them, “What do you think is happening right now?” A lot of times, your loved one knows that something is not the same with their memory and can acknowledge that. Then you might follow up with them by asking, “What do you want to do about it?” or “What would you like for us to do about it?” As long as your loved one has the cognitive ability to make a decision, allow them to lead the way. When they are at the point where they can no longer make decisions, ask them if there is someone they trust who they would like to appoint to make decisions on their behalf.
Step 6: Meet Them Where They Are. Sometimes you might be past the point of being able to have an honest conversation with them. At that point, you must meet them where they are. Spend time with them. Your presence matters. This could mean spending time with them in the nursing home or assisted living, coloring a picture with them, eating a meal together, going for a walk outside, or quietly sitting with them as they are sitting in their wheelchair looking out a window.
Step 7: Identify the Resources You Need. Find out what resources you will need now, in six months and for the long term. There are several local and national resources available to you and your loved one that can be invaluable during this process. There is financial support, transportation assistance, educational webinars, and support available for caregivers that people can take advantage of. Exploring the website of your local Department of Aging or the Alzheimer’s Association website is a great place to start.
Step 8: Write Out a Plan. Start with a plan that provides as much independence to the individual that is declining as possible. However, make sure they are safe and realistic. For example, the loved one may be able to take care of his activities of daily living, but not able to manage cooking. Also, ask questions like, is the loved one safe to drive? Is the loved one a fall risk at home? You want to make decisions to make sure your loved one and the general public is safe. When possible, try to get your loved one to agree to the plan. In some cases, they might refuse to comply with what you present to them in the plan. However, if your recommendations are necessary to keep your loved one or others safe, you will have to make for them. When cases like this arrive, you can get additional support from your village to put these necessary boundaries or changes in place.
Step 9: Make sure their Paperwork is Complete. There are a number of documents that are important to be complete with your loved one. You want to determine their power of attorney for their estate and for health care decisions, a POLST form (which covers a variety of end of life treatments), and their 5 Wishes. Their 5 Wishes include:
· Who do you want to make your health care decisions when you are no longer able to?
· What medical treatment do they desire or do not want?
· How do you want people to treat you during this season?
· What do you desire your loved ones to know?
· How comfortable do you want to be during this process?
Step 10: Find Community. It’s crucial to develop your support system during this process. Identify members from a faith-based community who you can ask to pray with you and accompany you along this journey. There are also support groups that are available for people who are caretakers. Connecting with other people is critical for someone who is accompanying their loved one who is struggling with Alzheimer’s because isolation can lead to burning out. Connect with others, so you don’t have to carry this weight of carrying for your loved one alone.
Step 11: Allow Yourself Time to Grieve. When an individual is declining cognitively, it is a loss. When there is a loss, you can experience emotions like grief, sadness, anger, and resentment. Reach out for assistance and guidance from individuals who you trust, or work with a counselor or social worker to have an outlet to express your feelings without reservation.
Step 12: Love Them Passionately. Until your loved one takes their last breath, love them passionately. Although they might struggle with cognitive decline, they feel your presence and love. Show them the love of Christ until the very end. As Paul has stated, in I Timothy 4:7 “I have fought the good fight, I have finished the race, I have kept the faith.
By Deb Torres, LCSW
Founder of the Institute for the Cycles of Life, LLC