The List of Fifty

My reflections over the past week…both of us have had an up and down last few weeks. I’m sure I could come up with fifty more.

1. Does today count? What you do today counts, no matter the memory or lack thereof.

2. When they do not recognize you, know that you are still in their brain history but as hard as it is, you may be lost, just for this day.

3. There is a silver lining to the disease, you just need to find it. My time with her is my silver lining.

4. Look at your loved ones hands and know how much they have accomplished in their lives.

5. God is always with Mom. She was/is a devoted Lutheran and I always catch her singing softly during their services.

6. I hate this disease.

7. When I am sad, I think of my Mom in her bikini top, picking raspberries in our garden and just enjoying her life.

8. Today was not a good day with Mom’s roommates’ daughter. I might need a glass of wine. No more on that subject.

9. Even if they don’t remember your visit, know that you made the effort to go. Mom told someone she hasn’t seen me in months!

10. Ask someone how they are doing. Many of us have parents with Parkinson’s, Alzheimer’s, Cancer or just parents that are getting older. To inquire means that you care.

11. It’s ok to cry. There are moments when I am sad and it will just hit me. Most times its in the parking lot and no one can see.

12. No day will be the same. Today, Mom was cranky even though I brought her sister to see her. We ate in a different dining room, which threw her and added to her confusion.

13. I am so proud we have raised over $20,000 for our Alzheimer’s Walk. All of you have made a difference and I hope a cure is in our future.

14. Find a neurologist who you connect with and trust. I love Mom’s doctor.

15.Your loved one is still here. I think that is so important.

16. Know that things will disappear in the memory care unit. I have talked about her remote, her toothpaste, her clothes and today it was her hand soap. These things will happen. Remember the story I wrote about when another resident was wearing Mom’s clothes?

17. Try to pick your battles. My battle right now is Medical Assistance and understanding all of it. I never will.

18. Medical Assistance denied Mom this week. Go back to #17.

19. I will never understand how the brain works. She can answer a Wheel of Fortune puzzle but can’t remember her love of cooking or Sophia’s name.

20. Always be nice to the caregivers. There may be issues but they have the hardest job. I did the same thing for four years, before becoming a nurse.

21. The Alzheimer’s Association is a great place to ask questions. I have used them for many things.

22. We brought our new dog over to see her and she wasn’t thrilled. She loves her two stuffed dogs and I except that.

23.Trust that you are doing the best that you know how. I struggle with this on a weekly basis.

24. My mom is still “Super Mom” and I honor her for those days by being good to her right now.

25. You will find yourself bringing her stuffed animals on your travels. Some day I will find this funny, now I just worry about them getting lost.

26. Bring your children to see your loved one. My girls totally understand Mom’s loss and I hope this understanding will serve them well. They are also very patient with her, even when she doesn’t remember their names.

27. Laugh, even though it really isn’t funny.

28. Sometimes I hate to go…and I know other people feel the same way.

29. Bingo in a memory care unit is, by far, the best event. False alarm bingo’s, missed numbers and overall craziness.

30. She always enjoys getting cards. Please keep continuing to send them. She really does love the connection still.

31. Snickers and coffee have never killed anyone. Well, I’m not 100% positive, but I’m pretty sure.

32. Anger. You are totally allowed to have this feeling.

33. Never state, “Do you remember when or this?”. I know how I feel when I don’t remember something, imagine their memory loss and not being able to keep up.

34. I have a love/hate relationship with the drug companies. They state it’s not a “cure all” medication but they almost make you feel guilty if you don’t have your loved one on them. Mom has been on Namenda and Aricept over the years and I haven’t seen one ounce of difference with her memory. But yet, I keep her on them. I am scared to take her off of them. And boy, do they make money.

35. She can forget who I am, but what bothers me the most of her loss, is her love of reading. Scrabble, word puzzles, books and writing letters. I hate that her love of reading is almost gone. She did read her devotional today, but it was slow reading.

36. If you are worried about your loved one driving, please have them tested. I think she still thinks she can drive.

37. We misplace the remote five times a week. Where does that thing go?

38. Holidays are hard and Easter is coming. She gets overwhelmed with the people and not knowing where she is at. This year, sadly, I may just celebrate with her at Clare Bridge. I hate that because holidays were her favorite time to cook and entertain.

39. She doesn’t cook any more. That almost bothers me as much as reading. Those of you that know her, know how much she could cook and bake.

40. You feel guilty about everything. It’s almost as bad as my kids. Am I completely screwing up her bills, taxes, paperwork or her life? I don’t think that ever goes away.

41. Remember, they had a busy life before their loss happened. I was looking through her 35 mm pictures this week, finishing a project. She looked so beautiful in her bathing suit, holding a stringer of fish. There were over 1,000 pictures of their happy life, before kids. I have sent the pictures away to be placed on a CD for her to look at.

42. Sometimes a hug just helps. When she is so confused and not having a great day, I just hug her and she calms down. We could all benefit from a hug, I think.

43. Have patience…some days are better than others regarding that.

44. When people come to see her, I try and tell her their names first. That way she is not embarrassed that she doesn’t remember their names.

45. Coffee, and in large amounts.

46. When you have a large network of friends and family, you have hit the jackpot. I am very thankful for the people that help my mother and I on a daily basis.

47. I become unglued when I order her briefs from Amazon and know how much they cost. Why didn’t I think of and market adult briefs?

48. Never steal from a vulnerable adult…if you do, I will run you over with my car.

49. Tell her that you love her, even if you know she can’t understand or hear you.

50. Pray for a cure for this evil disease.

Jodi