One of the biggest challenges I face when I talk or visit with my mom is remembering that this woman is still my mom. It’s easy for me to put up my wall and distance myself from her, and I do, often, because the hurt of her transformation into this now sometimes incoherent child just burns right through my heart—and when I start contemplating the future, my wall grows taller, thicker: more memories lost, maybe even my face and the physical stuff too… there may come a day when she can no longer control her bladder or she may be unable to bathe herself or she may accidentally hurt herself.
Worse yet, my wall sometimes means I can’t give my mom a big hug because for me, it’s just too hard to do. I want to, but there have been times when I’ve recoiled from her touch, not meaning to hurt her, but I’m sure I do. I hate myself for that and I try with every visit to get beyond my wall, my inability to connect because with her because if it were me in her shoes—losing myself—I would want the touch of my only daughter to comfort me.
So when I read an article in the Trinidad and Tobago’s Newsday about a 46-year-old woman named Christine Boden who suffers from AD, I knew immediately that I had to keep this as a handy reminder—and share with you. Boden offers “Caring Tips” from her own perspective to family and friends coping with a demented loved one. I think it’s easy to forget that these human beings are not the disease they are suffering from. They are still our mothers, our fathers, our sisters, and our brothers. They are our friends. I sometimes need to be reminded of that. I hope you find her words as touching and heartfelt as I did:
“Give us time and space to try and keep us doing as much as we can. Don’t take over! Let us make mistakes or fail, but don’t let us feel a failure. Help us not to give up.
“Maybe get us a diary, and help us parcel our activities for each day, and remind us about the day’s activities to get a sense of ‘Tuesdayness’, or ‘Julyness’, and to register what we did yesterday or last week.
“Think up some sort of “brain gym”—reading children’s books, magazines, perhaps. Watching quiz shows. Newspapers, board games, crosswords. But make sure we don’t feel overwhelmed. Watch carefully for signs that we are blanking out, or just giving up and going back into our shell.
“Is there a way you can help us carry on doing at least some of the household chores? Maybe signs around the house, lists each day of steps to take for each task. Don’t do it all for us—surely there is something useful we can still do.
“Make our spaces uncluttered, particularly in areas like the kitchen and bathroom. We have difficulty in vision and coordination which means we knock things over and feel clumsy. Decanting things into plastic containers might avoid breakages. Then when we stare blankly at the mess we have made by knocking things over, please help us clear up as we can’t think through the steps needed and get flustered and confused.
“If you can afford to try one of the new drugs that raise chemical messenger levels in the brain, try it. They help some of us and improve the quality of life immensely.
“Avoid background noise if you can, when talking to us. If the TV is on, mute it first. If children are underfoot, remember we will get tired very easily and find it very hard to concentrate on talking and listening as well. Maybe one child at a time and without background noise would be best. Maybe think about ear plugs for a visit to shopping centres, or other noisy places.
“Give us time to speak, wait for us to search around that untidy heap on the floor of the brain for the word we want to use. Try not to finish our sentences. Just listen, and don’t let us feel embarrassed if we lose the thread of what we say. Don’t rush into something because we can’t think or speak fast enough to let you know whether we agree. Try to give us time to respond – to let you know whether we really want to do it.
“If we see or smell things that aren’t there, don’t try to persuade us they aren’t. For us they are real. Comfort us and let us know you understand, and that although you can’t see or smell it, you know that we do.
“When you want to talk to us, think of some way of doing this without questions, which can alarm us or make us feel uncomfortable. If we have forgotten something special that happened recently, don’t assume it wasn’t special for us too, just give us a gentle prompt – we may just be momentarily blank.
“Don’t try too hard though to help us remember something that just happened. It never registered, we are never going to be able to recall it. If you can, avoid saying ‘That always happens to me!’ or ‘You look so well!’
“Don’t call us ‘dementing’ we are still people separate from our disease, we just have a disease of the brain. Saying we are people ‘with a dementing illness’ has negative connotations.
“Provide support and material for the sufferers—we need all the support we can get after having what I think is one of the worst diagnoses anyone can get.”