Watching a loved one move through the stages of Alzheimer's disease is one life's toughest and most heart-breaking challenges. If we had to list examples of emotions by the distress they cause us, at the top of the list would be the experience of watching someone we love experience pain, whether it's physical, psychological or emotional. Next on the list, at least for many caregivers, would be having to live with the fact that a loved one no longer recognizes us for who we are.
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I recall asking one of the nurses at the nursing home if my mother-in-law knew who I was. I was aware she couldn't have told anyone my name or my exact purpose in her life. That much was evident. However, I wondered if she knew that I was there to see her. The nurse assured me that my mother-in-law's seeing me step off the elevator as she sat in the common room was a highlight of her day. I was glad of that. I felt my visiting her was important no matter what she "knew," but it was nice to hear those words from the nurse just the same.
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Spouses and adult children of people with Alzheimer's disease and other dementias often have to brace themselves for a time when their loved one no longer recognizes them.
Not Being Recognized Doesn't Mean We're Forgotten
The pain of walking into a room and having one's spouse or parent not recognize us can tear some people apart. Sometimes, adult children especially, will say to me, why visit them? Why go through the pain of sitting there, when they don't even know me?
I'm not a qualified medical person, so I can only give my own thoughts on this situation. What I say to people is that their loved one has not "forgotten them." Even though the person may not indicate in any way that your presence is known, it may well be that the touch of your hand, your voice or even some sense we can't quite quantify will get through to this person, somehow.
Can They Hear Conversation Around Them?
It is believed that people in comas often hear conversation around them. If this is so, how can we know for certain what a person locked in an Alzheimer's fog really does, or doesn't, understand? I believe in touching people, caring lovingly for them, speaking to elders and treating them as functioning human beings, no matter what their condition appears to be. If I've done my best to treat them in this fashion, I know that they will have perceived whatever they are capable of perceiving. Hopefully, at the very least, they perceive that they are loved.
Photo Timeline for People With Alzheimer's
With Alzheimer's disease, short-term memory is destroyed. Therefore, while your spouse or parent may not know you as you look today (short-term memory), if you pulled out a photo album showing you 20 or 30 years ago, the person may recognize "you" right off (long-term memory).
A technique I've been reading about comes to mind. People have searched through pictures from the past and made up a timeline of sorts. If, as an adult child, you choose to do this, your timeline will consist of pictures of yourself at various ages, from childhood on. Each picture will have a label underneath stating in large, black type, your name and age at the time of the photo. It's generally good to have your baby picture, a picture of you as a young child, one from your late childhood, your teenage years, your young adult years and so on, until there is a photo showing you as you look now.
This timeline can often trigger remembrance, as the person with Alzheimer's "sees" you age. They see you at say, 50, in person. The last photo on the timeline is one that shows you as you look now. As with all the others, your name is under it. The photos run in order, from the baby photo to your current one, each with your name under it.
A spouse would probably want to start the pictures during the courtship period. Either way, the person with Alzheimer's sees this and may then understand that you are who you say you are.
This exercise doesn't work for everyone, but the idea that it works for some people is intriguing. And, even if it doesn't have the desired effect of helping the person with the disease understand who you are, the exercise of looking at old photos is still stimulating and often fun for them.
People Cope in Different Ways
As with nearly everything in life, we all cope in our own way. Some people, while feeling deeply the sorrow of watching a loved one's decline, can still feel they are communicating on some level. The relationship changes, to be sure, but the person with the disease is still "in there," and these people just keep working with the loved one on whatever level they can.
Others are so devastated they have a hard time even being around the loved one who has changed so much. They don't want to visit a loved one with Alzheimer's disease. This doesn't make them bad people, but my personal belief is that when we react in this way, we should do what we can to become educated about the disease or injury and learn how best to reach the person we love.
Don't Give Up on Your Loved One
Doing our best for those we love, no matter what their condition is, will make most of us feel better in the long run. If we need a support group, such as one offered by a local Alzheimer's Association, or personal counseling for caregivers to learn the skills we need to interact with our changed loved one, the payoff from trying to do our best can be enormous. No day will be perfect, and often you will feel as through your efforts really don't count. That's normal.
However, trying does count. Do your best for those you love, even when it's hard. This is not to say that you abuse yourself – but do your best to learn and grow as a caregiver. You aren't likely to regret it.