By Alma Gill
NNPA Columnist
Frustrated by Dementia
Dear Alma,
I need advice to help my beloved sister who has dementia. I don’t know how to communicate with her anymore. We were once very close. She was talented and had a lot of friends. She sang in the choir and was active in her church. Now she has trouble remembering words and speaking in complete sentences. She won’t take a shower or comb her hair. I just don’t know what to do. What would you suggest?
Diane Jackson, Woodbridge, Va.
Dear Diane,
I’m sorry to hear about your sister’s decline. It’s heartbreaking to watch as a loved one slips away. You’re not only dealing with the horrible disease of dementia, you’re dealing also with the loss of the sister you know her to be. My sister died many years ago and I still, to this day, have not recovered. Neither will you. But what you can do is this: Put on your “big sister” T-shirt, even if you are the little sister, like me, and fight this battle to win. Give your sister what she needs and not what you want her to have. Don’t determine your decisions around the sister she used to be, but deliver what’s necessary based on the sister she is today. If she loved music, turn on the radio. Read to her, especially the Bible. Sit and watch TV together, cartoons, game shows, PBS specials. Talk to her, not at her, while you’re watching. When she repeats her sentences, act as if it’s the first time you’ve heard those words. Don’t rush her when she’s speaking or finish her sentences. Let her be. When it comes to her hygiene, you can bathe her. Don’t ask her if she wants a bath, run the water and tell her it’s ready. When it comes to her hair, take her to the salon or sit her at the dining room table and go old-skool…you braid her hair (I know you know how.) Ask her to hold the extra brush while you’re doing it. That will take her mind off what you’re doing. The days of your sister making decisions are over. You’ll need to take on that role for her.
Of course you’ll encounter some resistance. Just remind yourself you’re doing what’s best for her. Don’t take it personally. You’ve become her caregiver. She’s counting on you and would do the same if the roles were reversed. I know you want to do all you can to bring your sister back and make it all better, but you can’t. She’ll continue to slip away. This isn’t by her choice, and unfortunately, she can’t help it. Sometimes as a caregiver, it’s hard to peel back the overwhelming layers of guilt and pain to see the blessing. Your blessing is you still have your sister. Trust me, once she’s gone, you’d give anything to be able to do it again. Don’t focus on what you see as yours or her shortcomings. Do your best to meet her needs. Your love for each other will never change, but you should readjust your expectations. As I’m sure you know, it’s important to keep up with doctor appointments, and it wouldn’t be a bad idea for you to find a support group. You and I know I’ve sugar coated this thing, but that’s because you’ve got a tough road ahead. We don’t know what the future holds, so when and if the doctors decide she needs more than you can handle, accept it; don’t debate or challenge it. They know what’s best. Now more than ever, enjoy your sister. This is a very small slice of the pie of life you’ve shared. Hug her often and relish the days.
Alma
‘My Unmarried Daughter is Pregnant”
Dear Alma,
I am crushed and ashamed that my daughter is pregnant. My young, unmarried, “from a Christian home” daughter is pregnant. This is just the worst thing that could have happen. Her father died when she was young, and I feel like this is all my fault. I sent her to visit family for the summer and she came back pregnant. How can I ever show my face in church again?
Darlena C., Tulsa, Oklahoma
Lookahear, sister Mary Magdalene, I’m not sure what church you attend, but you need to find one with some scared-kneed folks. Sure, this is a bad situation, but let’s put things into their proper perspective:
First, why is it that mothers feel so totally guilty when our young, unwed daughters get pregnant? Are we simply embarrassed, or are we pained by the future that lies ahead for them – a future we view through the prism of our own failed life choices and experiences?
Mother to mother, you do need to ring your daughter’s bell one good time – with words, of course, nothing demeaning or physical. Lay it all out. Let her know that you are disappointed. You’ve got to or you’ll release that negative energy in another direction. Be clear that disappointment does not mean you won’t support her. Reassure your daughter that you love her unconditionally. Don’t forget to give her a hug.
You’ve got to make a decision right here, right now, to support your daughter and lay down the future rules of engagement. For example, she will be a mother! Not the baby mama, baby friend or co-mother to Grandmama’s baby. You hear me? This is not your baby. As for your church family, rise above the whispers of your “we-don’t-sin” Christian friends (and you stop doing it, too, in case you were a part of that group). Find some “here-comes-trouble” Bible-reading sisters and brothers. You know what they say – trouble don’t last always, but “him and his boys” are always waiting for you, just around the corner. After you make your way through these muddy waters, the baby will be born healthy and as cute as ever. You’ll look down into those beautiful brown eyes and see the faces of your loved ones who have gone on to glory. You’ll also see that expression – Grandma, you got me, right? LMBO. Get ready to love your grand like no other. Don’t be embarrassed. We all have neck bones in our closets. It’s just that some of us have gone vegetarian and forgot when we use to eat meat.
Alma
Alma Gill’s newsroom experience spans more than 25 years, including various roles at USA Today, Newsday and the Washington Post. Email questions to: alwaysaskalma@yahoo.com. Follow her on Facebook at “Ask Alma” and twitter @almaaskalma.