CAREGIVING

A Guide to Caring for a Parent with Dementia at Home

It isn’t easy. You can know that, read about it, hear people’s stories, but until you do it, you don’t know how not easy it is.

You will pray for patience and compassion and feel frustrated, angry, and resentful.

 

Learn to be in the moment. When you’re getting her out the door, don’t reach back and try to close the door behind her. Keep your attention on her until both her feet are solidly placed on the ground and she’s balanced strongly on her walker. Then close the door.

Wrap yourself in a giant defense mechanism to keep away the reality of what’s happening to her. Because thinking too much about that will break your heart.

Marry a man who values family, yours as much as his own. Let him take care of you and her, and be grateful.

Argue with her when doesn’t want to take her pill or eat. Then feel guilty.

Feel guilty as often as you feel frustrated, angry, and resentful.

Try to temper your guilt etc. by telling yourself that you’re doing the best thing for her.

Remember that you’re doing this because you honestly believe it’s the best thing for her.

Treasure the good days, the times when she seems clear. Be grateful for the sense of humor she still has.

Try to get her out of the house at least once a week, regardless of how she protests that she’s too tired or doesn’t feel like going. When she’s out she perks up, notices what’s around her, and feels better.

Make little jokes to comfort yourself: She can’t be too bad yet; I haven’t found any shoes in the refrigerator. That becomes your touchstone, no shoes in the refrigerator. But it becomes less comforting when you start finding half a stick of butter that’s been in her walker basket for two days  or a dirty plate in a kitchen drawer.

Pick your battles. It isn’t important if she sleeps in her chair all day or doesn’t want to eat lunch. It is important that she gets to her doctor’s appointments. Use your energy on what matters most.

People will tell you: Take care of yourself. Make sure you get a break. You know you should do these things, but it’s hard to concentrate on yourself when your care is demanded almost constantly. So grab moments whenever you can. Be glad that she sleeps so much; it gives you a chance to get out to the store or walk the dog. Set up a monthly dinner date with your girlfriends, knowing your husband will be home with her. And a few times a year plan a night out with your husband: a Valentine’s dinner, the theater or a movie. You’ve learned that she’ll be all right for a few hours. You can be grateful for that.

Tell yourself that this won’t last forever. Remind yourself that she’s ninety-eight years old. Then remember with a shock that when she’s gone you’ll be devastated.

Take deep breaths. Keep yourself together, for her, for your husband, for you. Be glad that you’re able to do this. And keep going.