Living with Mild Cognitive Impairment (MCI)

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Welcome to the HABIT page for people living with Mild Cognitive Impairment (MCI) and program participants.  The HABIT Program is for individuals with MCI and their loved ones to learn the best strategies for adapting, coping, and living their best lives with MCI.

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Tue, May 29, 2018 9:25am

Who Else Besides Family Should I Tell About My MCI?

By Dr. Melanie Chandler, HABIT FL Director, @drmelaniechandler

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People usually let those around them know about personal information like a diagnosis of Mild Cognitive Impairment (MCI) by starting with the inner most circles and working their way out. Last week we discussed telling family about the MCI diagnosis.  This week we will focus on all of the other people in your life.

Closest Friends

Sometimes close friends may be like family, so you can follow the same general rule of thumb: it is likely best to tell them.  These are the people you turn to and who turn to you at times when you both need support.  So why not turn to them now?

Other Friends, Acquaintances, and Neighbors

When you move beyond telling your closest friends and family, the situation and advice becomes less concrete. Your personality will have a lot to do with it.  Some people are very private, and the list of those beyond family and closest friends who will know is very few if anybody.  Others describe themselves as more of an “open book” who do not mind everyone knowing.  But, those folks are not usually the ones asking us whom to tell!  When folks struggle with the question, they are usually concerned about the consequences.

Will they look at me differently? Treat me differently? Will they still want to be around me?

Truth be told, this often becomes one of those times in life when you “find out who your real friends are.” When people learn of something difficult, they often do not know how to best handle themselves or how to act around you. It is rare that someone would no longer like a person because of their memory difficulty. Usually it is more about them than you: they are afraid of doing or saying the wrong thing, or they just cannot handle their own emotions around the topic of aging and memory loss.

Honestly, some people may look at you differently or treat you differently. Again, it is because they don’t know how to act. They may overcompensate in how they talk to you in a way that feels patronizing. Or, they try to make you feel better by dismissing your memory loss as normal – “we all forget things, why worry!”  They may tell you stories of their experiences with someone with advanced dementia that is upsetting.  All these things are often not helpful, and you likely do not want to hear.

Teach them how to act around you. Tell them what is ok and not ok to say to you, or what you want to discuss.  Do this in a nice way, if you can, and especially if the relationship is important to you.

The wager you are making here is that you will find well-worth-it support from those who truly are your friends that will out weigh those who cannot handle the information.

A need to know basis

If they are not someone you know well, ask yourself, do they need to know? What would be the benefit of them knowing?  Perhaps it is a book club, golfing group, bible study class, or poker/bridge group. Letting them know about your memory may help them understand why you need extra time to keep track of the score or may forget the reading for the week. You may then find it less stressful to attend these groups for fear of people “finding out.” If you live alone, would it help if your neighbors knew so they could keep an eye out for you?  Should they keep an extra key if you misplace yours, or let you know if you forgot to turn the sprinklers off or close your garage door?

Put yourself in their shoes

You are the one diagnosed with MCI, but what if the shoe was on the other foot? Would you welcome knowing about it if your friend or neighbor had received a diagnosis? Most people say yes and can think of reasons why, in that relationship, they would welcome knowing. But maybe there are other relationships where you realize knowing maybe would not change anything, or the relationship is such that maybe there isn’t anything you could do to help. Perhaps that may guide if and how you share your diagnosis outside your family.

Committees/Organizations: Can You Responsibility Fulfill Your Role?

Sometimes individuals with MCI are on committees or have leadership roles in organizations. These people often struggle with how the group will react to the diagnosis, pitted against their fear that they will fail in their role because of memory loss. Ask yourself, who/what is at risk with you continuing in this role?  Can you put compensation strategies in place to help you keep doing this role well?

A particular struggle is that these sorts of groups are not always as supportive as a book club or other social group, especially if it is elected office, like on the Home Owner’s Association or local community organization. You may fear your opponents will use this against you, and they might.  Before making the decision to disclose your diagnosis, make the important decisions of 1) whether you can complete your current term and 2) whether you will run for that office again.

Every group is different. But, often even these groups do not want to see you suffer or fail.  Letting them know may allow you to get any help you need to get through your current term in the position. You may still have a lot of ideas to contribute—your short term memory problems may not change that. Or, if it is not realistic, feasible, or possible for you to continue in your role, other members of the group you trust can gracefully help you step away from that position. Leaders in these positions often are there because others value them.  In our experience, most groups react with support, and they are often impressed and inspired by the honesty and bravery you show in disclosing.

Final Thoughts

Some friends may need to know, and you tell them out of respect for them. Some colleagues/associates need to know, and you do it out of respect for the organization. In most cases, however, you are also telling others so that you benefit from support and understanding. Fear of embarrassment or being treated differently keeps you from receiving this support. Reactions from others will not always be peaches and cream; people are not perfect, and some of their reactions will be far from perfect. But, when you think through who you’d really like to know, the benefit of telling those people usually outweighs the cost.

Consider not just who you want to tell, but also think about giving your loved ones, like your spouse, permission to tell those they need to for support. Would it be OK if your wife told her best friend?  Would your husband feel relieved in being able to tell his adult children what you guys are going through?  Could you also encourage them to go to a support group where they could talk more anonymously?  Adjusting to a diagnosis of MCI does not just happen to you, and your loved one may need to reach out for support, too.

I enjoyed reading this post. I told everyone so I guess I'm an open book. I had all of the above consequences happen from some people being very supportive to others dismissing me as, just like all of us our age (68) to some just dropping out of my life. I find the ones that dismiss me to be the most annoying. I actually want to smack them. It's a really good way to push me away and that IS what happens. When first diagnosed I talked about it often and I sometimes wish I had not done that just because it's not very attractive to talk about the same thing over and over but, hey, they best get used to it right???!!!! Sorry….I have a sick sense of humor.

I rarely mention it now unless it is necessary. I mean I don't need to remind my family so why? I don't need to remind my friends so why? However if I am having work done by a contractor around my house I probably should tell them so they will understand why I am sometimes forgetful. I have found strangers to be hilarious when I share with them. For example if I forget something I really do get a look on my face that is apparently priceless and that usually provokes interesting comments from pharmacists or contractors or whatever. I just blurt it out that I have dementia and I have no clue what we are talking about. The response is ALWAYS, "I'm so sorry!." This provides me with a humerus conversation explaining to them how it's not THEIR fault and I don't BLAME THEM at all. Then we end up laughing about it and I go away feeling uplifted somehow.

I like living honestly with my White Matter. White brains matter after all!

Nancy

Liked by mbabkk

I believe sharing is a good idea as it give me more self confidence – over sharing ? Well why not when I forget my walking stick at Tesco they run after me kindly – when I pay for my grocery and walk away leaving it on the till they come and put it in my trolley and we smile and laugh—— I never had to give them a definition – I am just a regular customer and that is all they see many people my age 67 – so that to me is a non issue——- my neighbors 90 year old mother and is in stage 7 of Alzheimer's and yes sometimes we have to explain why she does what she does ( simple things like grabbing a bunch of bananas from a fruit stall while sitting in her wheelchair – with simple words we get lots of smiles back – sometimes we buy bananas sometimes we gently put them back. We never encounter any problems and I am just helping as little as I can to support – and maybe because I am obviously a foreigner in a thai town that helps a lot in the thai people reflecting I think – I am not a hero I am just a simple person from egalitarian Denmark trying to help if and when I can. It works and it gives me great pleasure when I fight with my own ailments

Liked by mbabkk

Self-disclosure is a delicate balance. It's important to help folks you help — go from- hurt to hope. To me, agree and comfort is a rule- even with our own ailments. I think if self-disclosure would erode someone's confidence in your helpfulness, I would think maybe sharing your MCI diagnosis Only with trusted folks would be best practice. I am new at this myself.

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