Memory-wise

by Anne Unkenstein

  Phillip, aged 86, has vascular dementia and lives in his daughter Julie’s house. Julie is at work during the day, and when she gets home Phillip often can’t remember where he has put his wallet or his keys. Julie decided to stick a location tracking device to her father’s wallet and keys, so they don’t have to have their daily search through the house!

  Anne

  Alarms and technical devices

  Use alarms to remind you to do something. For example, set an oven timer to remind you to turn the oven off. You or a family member can program timed reminders into your smartphone, and type in details of what you want to be reminded of. For example, your phone can be programmed to sound an alert when you need to take your medication. You may want to ask someone else to help set up these more complicated reminder systems if you are not familiar with them. If you use a digital calendar on your smartphone or computer, you can set this up to provide a variety of reminders, and share or ‘synchronise’ your calendar with others, so they are aware of your planned commitments. (See Chapter 6 for more information about technical devices.)

  Consider using specially designed ‘memory-wise’ household equipment to take the load off your memory. Many electrical appliances, such as irons and kettles, now have built-in shut-off devices in case the appliance is not switched off by the user. Safety cut-off switches can also be installed in gas stovetops, and special devices can be used to turn household lights on and off. Your local dementia support organisation will be able to offer further information about using assistive technology to support memory.

  In Julie’s kitchen she only has appliances that automatically turn themselves off after a period of time, in case Philip forgets to turn them off when she is at work.

  Anne

  Someone to help

  Another way to take the load off your memory is to ask someone to remind you. Family members or friends can provide reminders for specific needs; for example, you could ask someone to call or text you to remind you of an important appointment, or to take your medication. Sometimes people arrange for nurses to visit the house to dispense their medication. Friends or family can also help with the upkeep of your home memory centre, making sure it is up to date, and writing up new reminders as required.

  My family helps with my memory if they see I’m going wrong. If my wife goes out, she puts it on the board and I just look at it. I don’t write notes myself, but I do write down phone messages.

  Carl, 79

  When family members write a note about where they are going, make sure they write down the day and date, exactly where they are going, the time they are leaving and the time they will return, and a phone number that you can call them on if you need to.

  My memory fluctuates; some days I’m more alert than others. Some days I think, Why can’t I cope? Oh, why didn’t I remember that? I get annoyed with myself—I’m so silly, and I think my daughters would be disgusted with me about forgetting things. I write things down and use a calendar and diary too, but perhaps not as efficiently as I could. My grandson, Charlie, who is 18, is living with me at the moment. I often watch TV with him to distract myself from my worries.

  Doris, 80

  Doris would get more help from her written notes if she asked her grandson to remind her to use them. Using both a diary and a calendar can lead to problems, as you might not write your reminders on both. It works better if you have a streamlined system, with just one spot where you write your reminders. If you are out, and you don’t have your paper diary with you but want to write a reminder, you can use the ‘reminder’ function on your mobile phone. Type in a message to yourself—one that will come up when you get home—telling you to make a note in your diary. Or if you don’t use a mobile phone, ask someone to remind you to put the information into your home diary.

  If you are going to an important appointment to discuss medical, financial or legal matters, it helps to take a family member or friend with you. If you do this, you can be sure that you provide all the information required at the appointment, and you will not forget any of the issues discussed, including the reasons why any important decisions were made.

  There may be other occasions when you need assistance from others. You might be out for a walk and suddenly feel lost.

  I can be somewhere and have no idea where I am. Everything that I am comfortable with is gone. I think, where the hell am I?

  Roy, 66, has Alzheimer’s disease

  This feeling of disorientation is more likely to happen when you are somewhere unfamiliar, but it could also occur in familiar territory. If this happens, find someone to help you, and perhaps explain to them that you have a memory problem and need assistance. If you carry identification with you at all times, including your name, address, phone number and emergency contact, this will be helpful too. Some people like to wear a permanent bracelet engraved with their name, address, an emergency contact number and the words ‘memory illness’, in case of emergency. Another thing to consider is taking someone with you when you do go out, especially to somewhere that you don’t know well.

  I keep my wife’s phone number written on a piece of paper in my pocket when I go out for my daily walk.

  Mario, 79, has Alzheimer’s disease

  A few times at the local shopping centre when I went to the toilet, I would come out and think, Oh God, how do I get back? I don’t go to the toilets on my own anymore; I feel much more comfortable if someone comes with me.

  Beatrice, 72, has Alzheimer’s disease

  Sally, aged 60, enjoyed regular lunches with her girlfriends for many years. She described a time when she suddenly felt lost:

  This month’s lunch was planned for a new location. I started driving there, but there was lots of traffic and I took several wrong turns. I just kept driving around and around and I got upset. I was running really late. I decided to pull the plug on the lunch and drove home again. It was a horrible feeling.

  Sally, 60, has early Alzheimer’s disease

  Perhaps next time Sally has a lunch in an unfamiliar location, she could do some preparation before she leaves. She could draw a map, or write down her route so that she can check it as she drives, or pre-program the GPS in her car. Of course she could also ask a friend to accompany her or to pick her up.

  When talking to people, it can be difficult to find exactly the right word to express what you want to say, which can make it hard to communicate. This is often worse if you are feeling anxious or distracted.

  Nigel was having trouble recalling the name of the illness that his daughter had suffered from for most of her life. ‘Oh, I know so well, but I can’t say it … no I can’t think of it … I know it so well.’

  Anne

  The word is there, but I can’t access it.

  Gina, 72, has Alzheimer’s disease

  Take your time—work on keeping calm, and if the word you are looking for still doesn’t come to you, try:

  • describing what you mean, using other words or gestures

  • describing what it looks, feels or tastes like

  • asking yourself, what do I use it for?

  • showing someone what you mean by taking them to it or pointing to it

  • drawing what you mean on a piece of paper

  • changing the topic and coming back to it later

  • getting rid of something distracting you, perhaps by moving to a different location.

  Often it is helpful to be candid and tell the person you are talking to that you are having trouble finding a word; it takes the pressure off you, and perhaps the other person can guess. On the other hand, if that tends to fluster you, you might prefer to ask people politely but firmly not to prompt you, but to give you time to think—at least until you are ready to give up.

  It may be helpful to talk to your family and close friends about how you like to handle the situation when you can’t find the word that you want. Do you want them to say the word for you? Do you want to try and work it out for yourself, or use other
words to describe what you mean? Of course, how you wish to manage a block for a certain word may change according to your energy levels and mood.

  We all value our independence, and few of us like to rely on others for help. Karuni worked until she was 57 as a primary school teacher and teacher trainer, and now is a volunteer on her church committee.

  It’s my short-term memory; I forget things quite a lot, like what someone has just said to me. I can’t recall a visit a few weeks ago. I have a pad on the dressing table and loose bits of paper. I’ve recently found I can’t add up money, can’t add up the little things. I’ve stopped driving. I think it’s getting worse, and I hate to think I might get worse. It upsets me a lot. My older sister’s memory is excellent; she is able to do everything. I’m reliant on her—she helps me to remember and she does the finances. I feel guilty asking for help, especially with something that I taught when I was a teacher.

  Karuni, 72, has Alzheimer’s disease

  It is common to feel a sense of being ‘nagged’ when family and friends are providing regular reminders. Let people know when you can manage without their help, but accept the help you need. It often helps to tell people if the help they are giving you is too much at times. Ask them perhaps just to check what you have done, rather than to do it for you. You might like to find a place where you can have some personal quiet time, where you are not exposed to people’s looks and reactions to your memory difficulties.

  I’ve always had a great memory, and my husband has always had a bad memory. Now his is better and mine is worse. He is worried about me. He has taken over the shopping and finances and he wants to run the house like an army camp. We have a whiteboard and a shopping list book in the kitchen and a phone message book. He doesn’t let me do anything by myself, and is always watching over me and being critical of what I do. I can do things like knitting, but I can’t do it if something is distracting me, like when my husband puts the TV on really loud so that he can hear it. He often tells me something when I am distracted and then gets angry when I don’t remember it later. He is so impatient. Amy, 76

  I had difficulty just having quiet time in my shed because my wife always wanted to have me within her sight.

  Fred, 79

  It can be difficult to accept help from others, but this assistance often allows you to live more independently. Family members are usually pleased to be given the opportunity to ‘give back’ some of the support that you have given them over the years. It’s often a case of ‘what goes around comes around’!

  Further information and support

  Your family doctor can provide advice if you are concerned about memory. Your local dementia support organisation can provide further information, support and counselling. Details of such support organisations are provided in the ‘Resources’ section at the end of this book.

  You might also like to check the services that your local council/ health services provide. You can usually get help with cleaning and house maintenance, meals and transport. There is also a range of social activities or clubs to consider joining.

  Key points WHAT IF IT’S DEMENTIA?

  • When people use the terms ‘Alzheimer’s disease’ and ‘dementia’, they often use them interchangeably. Alzheimer’s disease is by far the most common, but not the only, cause of dementia.

  • Research into Alzheimer’s disease continues to focus on prevention and treatment to slow or halt the decline, but so far no medical cure has been discovered.

  • If the diagnosis is dementia, it helps to look closely at health and lifestyle issues and to use practical strategies to increase confidence, reduce anxiety, and work around the problems of memory loss.

  • Useful memory strategies include: a memory centre in your home, writing things down, storing objects in special places, and making use of memory-wise household equipment.

  • Asking someone to help with reminders and memory strategies is another way to take the load off your memory.

  CHAPTER 9

  Changes in someone else’s memory—what can we do?

  As our society becomes more alert to memory illnesses such as dementia, we begin to worry about other people’s memory as well as our own. It can be difficult to know what to do if someone close to you is having memory problems. This chapter provides practical advice for supporting a family member or friend who is experiencing memory difficulties.

  Normal age-related memory changes (Chapter 2) and health and lifestyle factors that can adversely influence memory from time to time (Chapter 3) have been discussed in previous chapters. It is possible that your relative or friend has memory inefficiencies related to being older, or to aspects of their current physical or mental health, or their living situation. For example, depression, anxiety, sleep deprivation, chronic pain or a major change, such as moving house, can all affect memory function. In addition, not paying attention to things is frequently related to not being able to remember them later. Some people may appear to be forgetting things, yet it may be due to their lack of interest or motivation to learn particular things. You might like to review Chapters 2 and 3 to check whether it seems wise to seek advice or treatment for any factors that you believe may be affecting your family member or friend’s memory at the moment. You could suggest that your relative or friend reads this book, and together you could share ideas for everyday memory strategies, such as those suggested in Chapter 6. Talking about your strategies for remembering provides a good opportunity to think of new ways that any health and lifestyle factors can be better managed.

  If you are concerned that there are signs of the beginnings of dementia, Chapter 8 provides information about dementia and Alzheimer’s disease, including how memory loss related to dementia differs from normal memory difficulties, and how dementia is diagnosed. If the person you are concerned about talks to you openly about being forgetful, then suggesting a visit to the family doctor to discuss the memory issue is a useful first step. Referral to a specialist may then follow (see Chapter 8 for details of investigations typically completed by a memory specialist). Having a memory assessment and knowing what you are dealing with can really help.

  For some people—and there are many reasons why—questioning or raising the issue of their memory abilities is not easy. Often people with memory loss are less aware of, and less concerned about, their memory than those around them. They might forget that they have forgotten something, which can be a difficult subject to broach. To further complicate matters, other family members or friends may have different opinions to you about the person you are concerned about. You will need to find a respectful, subtle approach that respects this person’s dignity. Ideally, this will lead to discussing the problem directly, which will in the long run be a much more effective approach. Some people find it useful to make a time to see the family doctor on their own, to discuss the changes that they have observed in their relative. Others use a book like this one as a starting point for discussion. It can be a relief to finally talk openly about the memory problem.

  It is frequently the case that adult children talk of their concerns about their mum or dad’s memory with each other long before they raise the issue, upfront, with their parent. This is usually the stage when the family seeks professional advice.

  Anne

  Supporting someone who has memory difficulties

  We are all different, and each person who has significant memory difficulties related to dementia or other changes in their brain is unique. When it comes to supporting someone with memory problems, there is no single correct approach, and the help that is relevant and effective can vary considerably. Often, there are changes in other areas of thinking and communication abilities, and in some aspects of behaviour and emotional control. The focus here is on memory, but it may help to talk with a doctor, health professional or counsellor from your local dementia support organisation about how to handle these additional changes.

  Stop for a moment and think back to the last time you forgot someth
ing. You may have forgotten a particular word, what someone said to you, or where you had left something. How did you feel about forgetting this? How did people around you react to your forgetting? The way that we react to memory lapses is important.

  Fergus, in his early sixties, came to see me to help work out what was causing his memory difficulties. He had only recently retired from a high-level management position. The consultation showed that Fergus had early-stage Alzheimer’s disease with significant memory difficulties. As is often the case, Fergus was not fully aware of the extent of his memory issues and did not seem concerned about them. When I spoke to his wife, Carolyn, after completing my assessment, I was struck by her calm and caring manner. She was acutely aware of how significant her husband’s memory loss was, and she knew it was likely he had the same illness that his mother and three of his mother’s relatives had developed at a similar age. Carolyn gently described her husband’s repetitive questioning and difficulty using household appliances that he had previously operated with ease. With a nurturing smile on her face, she put her hand on Fergus’ arm and said, ‘We just get through each day and don’t worry about his memory problem.’

  Anne

  Fergus is fortunate to be living with someone who seems to understand that his memory difficulties are not his fault. They are related to a memory illness, and he doesn’t forget things ‘on purpose’. The way that we react to memory loss varies. If we can provide support in a calm and non-judgemental manner, then the person with memory difficulties is more likely to remain content. Of course, there are times when we lose our patience with a person close to us who has become repetitive or forgotten important things, which we know tends to amplify their irritability and anxiety about remembering.

  Creating a supportive environment for someone with memory difficulties involves reducing the load on memory. It helps if you keep to a regular routine, doing things at regular times during the day and week as much as possible. Focus on familiarity—keep things where you have always kept them, shop at the same shops, and go for walks on well-known routes. Think about using technical devices that decrease the load on memory, such as appliances with automatic shut-off mechanisms, automated programs for timed sequences to switch lights on and off, and safety cut-off switches for kitchen appliances, such as gas stovetops.