Involving Family and Friends
It can sometimes be hard to broach the subject of difficulties in thinking and remembering with those around you. It means dealing with your own worries head on. And then sharing them with someone else, who may have anxieties and worries of their own about your thinking and memory. Most people around you want to help and are pleased to be able to help, whether this means listening to your experiences, or more actively supporting and helping you. Once your family and friends are in the picture, you may well find you feel more relaxed. You will no longer need to hide or cover up slips. You will no longer need to avoid activities that you fear may reveal your difficulties.
It may be easiest to start with an everyday slip, perhaps you missed a meeting with them, or forgot to get an item of shopping. You could either raise the general issue of your thinking and memory when the slip comes to light. Or, if there are too many people around at that time, or you would rather wait for a calmer moment when you are better prepared, mention it later. You could start off by talking the particular slip, and then speak more broadly about times when your concentration or memory has let you down. You can tell how interested and comfortable the other person is by how much eye contact they make, whether they ask questions to get more information and if they volunteer that they have noticed these difficulties on occasion.
It can seem like a rough deal when people who have any kind of illness or symptom sometimes have to support and reassure the people around them about the illness. This is no less true of MS. You may find your friend or relative is confident and pleased to talk about your difficulties. Or you may find that they are less eager, because of their own fears, worries and imaginings about your experiences. Common worries are that any change in any aspect of mental skill means that the person is “falling apart”, even “going mad”, which is certainly not true. Another fear is that any problems with memory and concentration will lead to a general dementia, such as they may have observed in Alzheimer’s Disease, but that is a very different condition to MS. Very few people with MS indeed ever experience a severe widespread loss of cognitive function, which most people would call a dementia. Also some family members who are not aware of the memory problems that MS can bring, might interpret forgetting household chores and errands as “bloody mindedness”, or an unwillingness to help, which is certainly not the case. Explaining that your thinking and remembering is affected by your MS will take away these negative views.
When someone offers help, it can be hard to accept it. But the way forward with family and friends is to share your experiences and let them support you appropriately. They will need feedback and guidance to know what to say and do. If you have told them that you can’t remember what you need to buy at the shops and a friend buys you a smart shopping list pad to stick on the fridge, that is a positive act and should be acknowledged. You could always let them know you have used the pad and how much it helped you. If they respond by offering to take you shopping, which is more help than you need and doesn’t overcome the real problem, try to acknowledge their offer warmly, but explain that isn’t exactly the help you need right now. Suggest another concrete way they can help you overcome a difficulty, or say would it be OK for you to come back to them with another problem that they could help with another time.
It can be helpful to give family members information about cognitive difficulties in MS. There are some good introductory fact sheets and leaflets, or they might want to look at this website.