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My mom, age 81, was diagnosed with mild memory loss about four years ago. She still lives in her house and seems to get along pretty well, although my sister and I have had to start helping more with groceries, laundry, etc. She has admitted recently that she has trouble finding words or remembering how to use the TV or the toaster, and it breaks my heart to see how upset this makes her. We don't know what to say to her: do we try to talk openly about these losses or just ignore them? How should we respond?
This is probably the worst part of having early-stage memory loss: being aware that you are declining and not being able to do anything about it. My mother used to say, "I'm not what I used to be" when she would have trouble doing things that used to be easy - using familiar appliances, remembering details, keeping house, coming up with words. She was losing ground, and she knew it. At the time, we would brush it off by saying, "That's OK, Mom, we're all forgetful." We thought it was kinder to appear unconcerned and nonchalant, like this sort of thing was completely normal. However, we learned later that this was her way of reaching out, of looking for answers to what was happening to her. So it might actually have been kinder if we had opened that door a little wider, to have given her the chance to say what was on her mind.
Most of us are reluctant to talk openly about memory loss to someone who has it. If someone you knew, someone who does NOT have dementia, admitted to you that they were having difficulty with something, what would you say to them? Would you brush it off? Would you change the subject? Probably not. More than likely, you would be compassionate, sympathetic, and understanding....even if you couldn't fix the problem.
Your mom deserves the same consideration. She may be cognitively impaired, but she still has the same fears, concerns, and issues we all have - and like all of us, she wants to be heard, to be listened to, and to be taken seriously. And because this is a very scary journey she's on (can you imagine what it must be like to live with the fear that you're losing yourself?), she also needs reassurance: reassurance that you understand, that you love her, and that you are there for her.
So the next time she brings up something she's having trouble with, go there with her. Maybe invite some conversation by saying "I know that must be hard, Mom. Tell me more about it." Allow her the chance to say what's on her mind. Explore her emotions frankly, but simply. "I wish I could help" shows her you're listening. Avoid fixing or minimizing: "Oh Mom, everyone forgets things" or "It doesn't matter, Mom, it's just a part of getting old." Put yourself in her place: sometimes all you need is just to talk about your problems with someone who cares. And when she's having difficulty doing a task, don't assume she wants you to do it for her. Ask if she wants you to help, and respect her decision. It may be more important for her to do it herself and do it wrong than to have you step in and take over (the exception to this rule is when safety is at issue, such as using the stove, driving a car, etc.).
Always end whatever conversation you're having by reassuring her that what she's experiencing, while difficult, is part of the disease (we used to tell Mom "that part of your brain is broken."). Be sure to let her know that you love her and you'll be there to help her through it. And if you're not sure of what words to use, you can always convey your message with a hug or a squeeze of her hand. Whatever you do, you will be showing her that she is still respected as a human being.
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My husband has been in a special care dementia facility for over a year. Our children live less than two hours away, and although they have always been close to their father and concerned about his condition, now that he's living in the facility they have all but stopped coming to visit him. Their excuse is that Dad doesn't remember them or their visits, so they don't see the point in coming any more. This hurts me deeply, and I think he misses them. What can I say to them?
First, you should know that just because his children don't come to see him any more doesn't mean that they don't still love him as much as ever. Seeing a loved one in a facility, not in his familiar home setting, is difficult for most family members to come to terms with. It's especially hard when they don't see him day-to-day and therefore don't get accustomed to the new situation as quickly. Let's face it, makin te transition from home to a fcility is touc for everybody - and it's tougher on some than on other.
Most people are, quite frankly, uncomfortable in a long-term care facility, but there are a few things you can do to make it easier for your children to stay connected to their Dad. The first is to tell them, in no uncertain terms, that Dad is still there. He may not look the same or sound the same, but he's still there. He has lost of lot of himself, it's true, but he has retained a lot, if they can just dig a little deeper to find it. He can still feel joy, pain, and sadness. He can still laugh, still cry, still love, still tap his foot to music, and still reach out to touch a kind face. He can still enjoy a joke. He can still recognize a song from his youth. And he can still get pleasure from a loved one's visit. Should it matter that he doesn't remember it a few minutes later? He lives his life in the present moment, and as the daughter of a stroke victim learned, "Making a moment worth it is much better than making it last."
Another way to encourage visits from your children might be to suggest things they can do to fill the time:
Since most dementia patients have trouble with spoken language, trying to have conversations with them can often be frustrating. Sitting in silence with someone isn't something most of us do comfortably, so having other options at the ready might make the visit easier:
- Reading aloud can give the visitor something to do, and allow the resident to sit quietly if talking is difficult. Usually a short poem or story (think Readers Digest or familiar poems from childhood), something without a plot to follow, will work better than an article from the day's newspaper.
- Looking through a book with a lot of pictures (animals and babies work well), a calendar with large color pictures, or maybe a photo album from the resident's early life, can spark some interest.
- If there are bird feeders outside or a fish tank available, these can present good opportunities for quiet watching and occasional commentary.
- Music is often a wonderful connection. Softly singing a well-known song (You Are My Sunshine, Jesus Loves Me, etc.) often reaches a person with dementia when words do not.
- If the person is ambulatory, "Let's take a walk, Dad" is a great way to get the visit going. There's always something to see, even if it's only down the hall or just outside the door.
- Uncomplicated, familiar activities, which may be boring to you, will often resonate with a person who has memory loss. Never underestimate the simple joy of picking up pebbles and leaves, of fingering a box of colorful buttons, of petting a dog, or of sharing a cookie.
Be aware that you may have to try several different things before you make a connection, and that what works on one visit may not on the next. The point of all of this is to find Dad where he is, not to try and force him back to where he used to be. The goal is simply to be with him for a short time, without expectations or agendas....or even conversation.
And if your children lament that "Dad doesn't know us any more," they should know this: he may have forgotten their names, but he still recognizes them with his heart.
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