Serving as a family caregiver for a parent with Alzheimer’s is a lot like being a brand new parent – most of us have nearly zero experience with the process. One huge difference is that when tending a newborn many of us can fall back on our own rearing. At least we have a little awareness of the good ways our parents parented us.
But when it comes to caring and relating to a loved one with memory loss, most of us have no experience and we find the situation overwhelmingly counterintuitive. When dealing with a parent with Alzheimer’s, we often discover that the right thing to do is often the opposite of how we mange connections in every other part of our lives.
Strategies for Dementia Caregiving
While there is no “Rule Book” for how to best relate to our parents along their memory loss journey, a number of trusted resources such as AARP, the Alzheimer’s Foundation of America and the Family Caregiver Alliance® The National Center on Caregiving (FCA) offer a plethora of helpful, well-researched ideas for families.
In an article on the FCA website called “Ten Real-Life Strategies for Dementia Caregiving,” the author provides insights into the how’s and whys certain counterintuitive strategies work well with someone with memory loss. Here, we summarize these strategies:
- Being Reasonable, Rational, and Logical Will Just Get You into Trouble.
In everyday life, we usually get people to do what we want by explaining our needs. However, the person with dementia doesn’t have a “boss” in his brain any longer, so he does not respond to arguments, no matter how logical. Straightforward, simple sentences about what is going to happen are usually the best.
- People with Dementia Do Not Need to Be Grounded in Reality.
When someone with memory loss forgets that his mother is deceased, it doesn’t help to remind him or argue about the “truth.” All this fuss does is remind him about the pain of that loss. Redirecting and asking someone to tell you about the person he has asked about is a better, softer way to calm a person with dementia.
- You Cannot Be a Perfect Caregiver.
There are no perfect parents and there are no perfect caregivers. We just do the best we can. That said, it is important to accept that caregivers experience a full range of emotions including impatience and frustration. Try to accept your situation and forgive your loved one as well as yourself when negative emotions come over you.
- Therapeutic Lying Reduces Stress.
Honesty is the best policy…um, maybe not with someone who has dementia. Sometimes honesty can lead to distress for everyone. Think about it. Does it really matter that your loved one thinks she is the volunteer at the day care center? Many caregivers find it is easier to “go with the flow” and use the topic at hand as a means of gentle distraction to move through life a little easier.
- Making Agreements Doesn’t Work.
Asking, reminding and cajoling your loved one just doesn’t work because the plan is soon forgotten. Leaving notes as reminders can sometimes help in the early stages, but as the disease progresses, this will not work. Instead of discussing every detail, it works better if the caregiver simply takes action to make the environment safer and easier to navigate. For example, getting a tea kettle with an automatic “off” switch is better than warning someone of the dangers of leaving the stove on.
- Doctors Often Need to Be Educated By You.
Tell the doctor what you see at home. The doctor can’t tell during an examination that your loved one has been up all night pacing. Doctors often use therapeutic lying to help patients accept treatments or medications (e.g., telling the patient that an antidepressant is for memory rather than depression).
- You Can’t Do It All. Accept Help Before You Get Desperate.
Say “YES” when people offer to help. Make a list of chores people can help with such as taking Mom out for a walk or picking up a prescription or staying with your loved one while you run an errand. It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support.
- It Is Easy to Both Overestimate and Underestimate What Your Loved One Can Do.
Like parenting kids, we don’t always know what our parent can do or can’t do on a certain day. While we don’t want to decrease their independence by doing too much, on the other hand, we don’t want our loved one to be frustrated by challenging them with an impossible job. It is difficult to find the balance, especially since things change from day to day.
- Tell, Don’t Ask.
At some point asking “What would you like for dinner?” may be beyond your loved ones ability to answer. Even if they have a preference, they may not be able to form the words to express it. Just as we don’t ask babies what they want to eat, it works best to simply say, “We are going to eat now.” This straightforward approach helps get the job done.
- It Is Perfectly Normal to Question the Diagnosis When Someone Has Moments of Lucidity.
Caregivers are often surprised to hear or see their loved one making perfect sense or behaving appropriately. They may feel frustration that the person has been faking it or they may question the doctor’s diagnosis. As confusing as this is, the reality is that these moments of clarity and “normality” do happen. The best advice is to treasure them when they occur.