After getting the diagnosis of MCI, people naturally start to think about whether or not to tell those around them. Patients often ask us our advice on who to tell and when. The answer often depends upon who you are thinking of telling, their relationship to you, and your own family and relationship dynamics. While there is no one answer, here are some thoughts from our experience of working with patients with MCI and their families.
More often than not, this person has been a part of the journey to get the diagnosis of MCI from the beginning or near the beginning. Perhaps they are the ones that brought up their concerns about your memory even before you noticed it. Most of the time, people find having their spouse alongside them in the experience to be essential. The issue is not whether to tell the spouse about the diagnosis or not; the issue is more often sitting down to really discuss it. What does the diagnosis mean for you both, how do each of you feel about it, what adaptations may you need to make in the present, and what plans you may need to make about your future. We’ve discussed communication with our partners in other blogs.
There are exceptions, of course. Sometimes spouses lead independent lives, or the spouse’s emotional or physical health concerns make the person with MCI reluctant to tell them for fear of causing more stress or upset. Maybe it is a boyfriend or a girlfriend rather than a spouse, and you are afraid of losing them. In the end, those who love you usually want to know about the diagnosis so that they can support you.
Maybe your adult child(ren) have also been there from the beginning of getting the diagnosis of MCI. Perhaps they were the first ones to draw your attention to it, or convince you to go to the doctor. Other times, our patients with MCI are worried about telling their adult kids, and it usually revolves around two main concerns:
Perhaps the most frequent argument we hear to not to tell adult children is that you don’t want to worry them with your MCI diagnosis. Or, their lives are so busy, you don’t want to burden them with this news. Keep in mind, however, that our family members are often the first to notice memory changes. In other words, it is very difficult to hide even subtle memory changes from the family. Family expect us to remember the stories they share with us, important events such as birthdays (when they were expecting a card that never came), or the names of the grandchildren. When we don’t remember these things, all kinds of emotions may arise in our family members, including frustration, hurt, and even anger. Once they start see a pattern, or realize it’s not personal, then they often get worried. In our experience, it is usually a relief to them to hear that you have taken steps to find out what is going on to get the diagnosis. As a rule of thumb:
If someone you are close to spends significant time around you, or talks to you regularly on the phone, odds are they already suspect something is different with your memory… and are worried.
Perhaps you are not ready to bring the adult kids into this experience with you, as you are afraid they may want to take over. You may be still processing what this MCI diagnosis means for you, and fiercely want to defend your independence. Don’t worry, we want you to defend your independence, too. We also want you to balance it with having a support network who can be involved in sensible planning and putting safety nets in place in case your memory gets worse. Telling your kids you have MCI is NOT the same thing as allowing them to know about your finances, monitor your driving, or oversee your personal business affairs. These are separate conversations. Admission of a diagnosis does not have to be the end of your independence.
A big part of the decision to tell the grandkids is often how old they are. If they are adults or older teens, the answer is usually much like our discussion when telling adult children. If they are younger, you likely should have a discussion with their parents. Are you comfortable with the younger grandkids knowing? How much detail do you want them to know? In our experience, people often tell the younger grandkids something more general, like “grandpa has trouble remembering things” or “you might need to help Nana remember that” rather than go into the details of the diagnosis. Of course, that depends not only on the age, but also the personality and maturity of the child in question. If you don’t want the grandkids to know, discuss why with their parents. And, don’t forget their side of this: do your kids want their kids to know? Why or why not?
What about your brothers, sisters, cousins, and everyone else? For those you are close with, the answer likely follows some of the same guidelines as talking with your significant other or adult kids. If you are not that close, the answer may be less clear. (Next week’s blog may help; see below.)
“What can they do about it?” You may not even know all the answers to this question yourself at this point. Still, think about what level of detail about the diagnosis, prognosis, and treatment options you want to discuss with them.
“What are you doing about it?” Again, think about what all you want to share about your doctor appointments, doctor’s recommendations, medications, etc. The also likely want reassurance that you are putting measures in place to help manage your day to day life successfully. Let them know what you are doing to help you stay independent, like setting up auto-pay, using a pill-box, or taking a driving test. Or, perhaps that is as simple as telling them that your spouse is helping make sure you don’t forget or overlook things.
One very important thing you are doing about it is getting support by telling those you love about your diagnosis of MCI. We may think, “I have to tell such and such because they have the right to know,” or “they will be upset if I don’t tell them,” or some other reason why we are telling them for them. This may be true, but what we are also giving ourselves is the support of the person that we told. Building this support network will be essential to good coping with MCI.
“How can I help?” If you want help, respond to their offer honestly with what you need. This is not a time to try to do it alone or “not be a bother.” If you don’t want help, what boundaries do you want to set up front? Often, the question is more urgent and more in need of honest answers if you are living alone. Letting a loved one help you often helps them to better manage their own emotions about your diagnosis, too.
Keep in mind that all families are different. We find that 99/100 people find the support they need by telling their families.
However, what we’ve written above assumes that the people we are telling have our best interest in mind and have normal coping resources when presented with difficult information. Not everyone is mature. Not all family members have your best interest in mind. People can be self-centered or counterproductive in their reactions. If something like that may be true in your relationship with a particular family member, consider discussing whether or how to tell that person with other family members you do trust to respond well.
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