When a loved one has been diagnosed with dementia, it can seem like your whole world has been turned upside down. While your previous normal no longer exists, there are still things you can do to cope more effectively with a changing and often challenging situation.
1) It is helpful to remember that someone with dementia has a new reference point for what’s “normal” for them. They most likely can’t remember their former normal, and they may not be aware that their new normal is different from the normal of others around them. They will take their cues from you. If you appear to be disturbed, frustrated or surprised with their behavior, they will sense that something is wrong, and may start to worry or fuss that they are bad or wrong. Dementia also affects their ability to reason properly.
2) Be prepared to hear stories repeated over and over again. You will hear stories that your loved one will not remember they told you before. If it gives them delight to tell the story or to just be heard, it will help you both if you listen as if you are hearing it for the first time, and can be just as curious and interested each time. You both will feel more relaxed, and you both will also benefit from the deeper connection.
3) Don’t be surprised if story details change each time a story is retold. As the disease progresses, some details may be left out, or new ones may appear. In most situations don’t dwell on accuracy. If you are tempted to correct him or her, ask yourself if it really matters that they are accurate. Unless it is a life or death matter, it’s probably not important for them to be accurate.
If your loved one with dementia is in a care facility, and you are able to observe how they interact with other residents, apply what you learn to how you interact with them. Other residents don’t mind hearing the same story over and over, because each of them are telling and hearing stories as if for the first time!
4) Don’t expect them to be who they once were. It will frustrate you and your loved one if you try to get them to remember and be who they once were. They are no longer that person. When you are able to accept that, you will be able to learn about and appreciate who they are now. They will enjoy their time with you more.
5) It can be challenging to balance the grief and loss of losing touch with your loved one, with wanting to appreciate your time with them. Know that you will have feelings about what is happening. Allow yourself opportunities to grieve on your own or with family or friends, so that you are able to be fully present when you can be with them. Use your time with them to really connect, and see the beauty and love in who they are now. You may create some wonderful new memories.
6) If you are the caregiver of an aging parent with dementia, expect that at times you may need to be a ‘crutch’ of sorts. You might need to remind them of who you are – and what role you play in their life. They may remember you as ‘some nice person who stopped by to visit’ or who ‘called them on the phone.’ Don’t take it personally. They really can’t remember. And if they happen to remember a visit or call, they might not be able to connect the dots. If you keep ‘trying to get them to remember,’ they will likely become frustrated and agitated. But if they simply enjoyed your visit, then appreciate that you have made their life brighter that day, and yours a little richer.
7) Set up systems to give them support with routine tasks. Separate pills and supplements into daily divided doses. If they are still managing their finances, set up regular payments due on automatic payments when possible. If they are living in a community setting, arrange for friends or aides to come and get them when it’s time for meals.
8) Limit their choices. As dementia progresses, it is more and more difficult for an individual to make choices. There are several ways you can help to minimize their choices. Go through their closet with them, and get rid of anything they do not currently wear. While a painful exercise for some healthy adults, for someone with dementia, they will not miss the extras, and may not even remember some of their clothing as clothing that belongs to them. When going to a restaurant, a menu can be very overwhelming to someone with dementia. Pay attention to what they have enjoyed in the recent past, and make a suggestion for their order. They will most likely be very grateful to not have to choose.
9) Find a dementia support group (for caregivers), and attend at least one meeting. If you are the primary caregiver for someone with dementia, you will most likely benefit from the sense of community, and from knowing that you are not the only one dealing with such a difficult situation. It can be very rewarding to know you’re not alone and to know that others can relate to your struggle. In addition, you probably won’t want to share your frustrations with your loved one, so support groups offer a safe place to vent and share your real feelings.
10) For a little perspective, rent the movie “50 First Dates” and watch it with new eyes. While the movie deals with amnesia, there’s a lot that can be learned from the way the characters interact with each other and the memory loss.
When your loved one has dementia, there is no doubt that you are on an ever changing journey. As the disease progresses, their needs become simpler. They just want someone to love them and honor who they are in any moment. Each moment will likely be very different. If you are able to detach with love and relate to them in a way that allows you to discover who they are each minute of each day, the journey will be more peaceful and perhaps even enjoyable.