uu Featured Article: Living with Alzheimer’sA tale of love, loss and learning

Featured Article: Living with Alzheimer’s
A tale of love, loss and learning

By Regina McNamara, RN MSN Owner

This space is usually reserved for a piece on Alzheimer’s by our friend Bob DeMarco, who generously shares his wisdom about the disease, gathered over 8 years by caring for his mother Dotty who died in May 2012. That was just two months prior to my own mother’s death, Kelly’s grandmother.

This month, National Alzheimer’s month, we dedicate this space to a very special person loved and lost to this disease. With the benefit of hindsight, and the gift of perspective four years later, as well as the comfort in knowing we did our very best to give our mother/grandmother what she wanted so very much, a peaceful home death, we share with you, our wonderful and supportive readers, the following lessons, hard earned, well intentioned, easily adapted to all of you and your loved ones.


We learned that no one is adequately prepared for Alzheimer’s in his or her own family. At least our clients have US. We only had each other.

1. Never forget the person with Alzheimer’s is still the person you love. She is still the little girl who grew up in a non- ideal childhood in the Depression, the radiant teen in her first prom dress, lovingly stitched by her mother, the beautiful bride, the busy suburban mother, the much loved wife, the loving sister and friend, the busy mom, the adored grandmother. And sometimes she is all these people in the same day. It is one of the gifts of Alzheimer’s that we are able to travel back in time with our loved ones.

2. Live in the present. Tomorrow may be worse or better than today or not come at all. You only have today. Make the best of it. Go outside; sing (wrong pitch is fine). Talk. Ask questions. Above all, listen.

3. Share your world with her. The world of the person with Alzheimer’s is very small. Tell stories about your day, funny stories, silly things, and share pictures.

4. Allow animals to share her space. Well-behaved dogs can be enormously comforting, non judgmental, and often entertaining. And they ask nothing in return. The same is true of cats who can be disarmingly intuitive when an elderly person is beginning to fade away from this life.

5. Put aside your own religious beliefs or non-beliefs and insure she has ample opportunity to engage in religious rituals that are important to her.

6. Never underestimate the power of touch. Elderly folks can never get enough of the human touch, but this is essential with Alzheimer’s people. It is how they connect with their loved ones. Holding hands, touching shoulders, giving back rubs, hand and feet massages. This is how love feels to them.

7. Include her in all family gatherings and celebrations. Family members can easily learn how to communicate with Alzheimer’s people and how to help them in a crowd. When family is everything to an elderly person, like it was with our mom/grandmother, make sure they are part of everything. Accept them as they are.

8. Enjoy Life with her. Regular restaurant jaunts, to places that are familiar to her, trips into the city, parties at friends or other relatives’ homes, can all be fun if the needs of the Alzheimer’s person are taken into account

9. Explain to friends and family members who visit how best to interact with her. Explain the importance of speaking slowly... and simply, looking at her, expecting unusual responses and rolling with them. It will become very difficult in the later stages for then to talk on the phone. Visits in person become very important. Encourage visitors, even if they are uncomfortable. This is not about them…And This is not a contagious disease.

10. Surround her with music, flowers and all things lovely before she dies. We created a play list for my mother of her favorite music that her caregiver enjoyed as well. They sang together. Remember again this is not about your taste in music but what she enjoys. Flowers are more meaningful to the living than those departed.

11. Celebrate. Create memories. My mother loved Christmas. She had a beautiful Christmas tree, large, artificial. We saw no reason to take it down. So we changed decorations with each season. It became a birthday tree, a Valentine’s tree, an Easter tree, a Memorial Day tree, etc. Re-dressed for each occasion, decorated with pictures of family members, a source of constant joy to her, with little effort by us.

12. Encourage grandchildren to visit and entertain her. Every family has talented grandchildren and ours is no exception. Singers, musicians, readers, all shared their talents and entertained her. When TV is no longer enjoyable or understandable, live performances are treasured.

13. Do not ever worry about how other people may react to an Alzheimer’s person enjoying life. That is simply their problem, not yours, not hers. Bless the fellow church members who spoke with our mom and enjoyed her presence at Mass. Ditto for the staff at her favorite restaurants and grocery stores. Smiling at her, laughing with her, thank you all for your patience. . Once again we are overwhelmed by the kindness of strangers.

14. Be There. Be present. For all the important times. The happy, the sad, the funny, the final days/hours. Other demands on your time will wait. Work will wait. Be there. We were all glad we were. It was all she wanted. This was our final gift to her.

15. Take care of yourself, each other and most of all the caregivers. Those caring for Alzheimer’s people are at significant risk themselves, for depression or other illnesses. Both lay caregivers and family caregivers need support and encouragement. Once we literally forced our mother’s caregiver to leave my mothers side while we brought in a night aide to relieve her. She slept almost 20 hours. Do not wait so long.

16. This is a terminal disease. As we often say with child rearing, “The days are long bur the years are short”. Your loved one is with you for a limited amount of time. A short and precious period. On your most frustrating day, look to the future when she will no longer be with you. There are so many days when we would give anything to have her back for just one day.

17. Pay it forward. Remember and share your lessons with friends and family who are struggling. Be alert for strangers who appear to be a bit confused and help them out. We are fortunate in our business to help clients and families every day. But everyone knows someone who is affected. Currently 1 in 9 people over 65 are affected in the U.S. But also bear in mind that no two Alzheimer’s people are alike.

Always be kind and gentle. And patient.

During this time of Thanksgiving, we are so grateful to the clients and families who trust us with the care of their loved ones. You will never know how much you all mean to us.■