Featured Article:
Happy Birthday Mom/Mimi

By By Regina and Kelly McNamara
Owners, Always There Home Care

As many of our readers know, we lost our mother and grandmother Jean/Mimi in July 2012. She died peacefully at home surrounded by family while under hospice care. We miss her every day. She would have been 87 on March 12.

We take this occasion of her birthday to share some of the insights we gathered during our experience with a family member living with Alzheimer’s. Everyone reading this will live with this disease at some point in his or her lives. They, a friend or family member will experience Alzheimer’s, and will be lost to you. Some of these insights we learned from others and applied to our situation. We are so grateful for all those who shared their thoughts and ideas. So we pass them along.

1. Live life to the fullest up until the last day.
Alzheimer’s is a heartbreaking terminal disease. But dwelling on this will not help. Smart planning will insure that persons with Alzheimer’s can enjoy many outings and activities with family and friends. Always carry spares of everything. If the person uses a walker, bring along a transport wheelchair.
Always insure they are well groomed and dressed nicely. Steer clear of all negative people. Stay close to them to assist or clarify what others are saying to them. Slow down to their pace. Bring them along to every family activity, to restaurants, to church, to other outings. We cannot pass a dog park without remembering her chatting it up with owners and their dogs.

2. Honor her wishes, regardless of the inconvenience to you.
She wants to attend a family wedding out of state, the church dinner, funerals of friends, birthday parties, and trips to the city. She has expressed a desire to die in the home in which she raised her family and lived in for five decades. This is not about your wishes, only hers. Make it happen. Accommodate. Your memories of these events will be well worth the effort.

3. Take pictures, many of them.
Perhaps in the age of constant photo taking and sharing, this seems obvious, but please click away. These will be priceless when she’s gone.

4. Communicate in writing or in person.
People living with dementia do not communicate well on the phone. Spare yourself and them this frustration. Write letters, send faxes or emails, or better yet, come in person. One of our family members set her up with a fax machine. We sent emails directly to the fax where they printed out. She delighted in checking her “mail “ every day. Pictures were especially appreciated.

5. Find humor every day and share it with her.
The world of dementia is very small. Yours is not. Bring your daily events into her life via stories, especially funny ones. Do not expect her to begin a conversation. Bring your material and share it. Speak slowly, clearly, using eye contact. One thought at a time. You think it’s silly or not worth sharing.? You’re wrong.

6. Listen …Over and Over.
A friend whose mother had recently died of Alzheimer’s shared the following thought with us. “When my mom was alive, I would grow so tired and frustrated when she told the same story, over and over. Now that she’s gone, I would give anything to hear just one of those stories again.” Wonderful advice, we appreciated and followed.

7. Educate others and welcome them into her world.
Sometimes friends or family members will avoid persons with dementia, not because of mean-spiritedness but unawareness. Give then suggestions of things to bring, when to visit,
places they may like to go, activities they may enjoy and encourage them to participate at their comfort level. And keep it simple. Ask caregivers, they often have great ideas. Friends of hers told us at her funeral that they wish they could have done more. We reminded them that they treated her no differently than they ever had and were so pleasant to her each time they saw her. This meant more to her and to us than they will ever know.

8. Bring on the animals and children.
Babies, children, dogs and even cats…they all bring unconditional love, are wonderful to hug and cuddle, and never mind hearing the same story over and over. They bring a very special kind of joy that humans simply cannot.

9. Bring on the music.
We are fortunate to have talented musicians in our family, also singers. And her caregiver had a magnificent voice. Surround her with music, live, played by grandchildren, especially music from her era, or easily recognized tunes. Join her in singing, no talent required. Build a playlist of her favorites, of melodies that bring back memories. During her last week, an iPod with her playlist could be heard 24/7, and brought her joy at the end of her life. Again a reminder, this is not about YOU, so focus on her preferences.

10. No room for regrets.
Oddly enough, it is the people who have done their very best with their family members who voice regrets at the person’s passing. “ I hear what others do for their mothers and I now feel inadequate” This from a son who visited daily, attended to household repairs and took her out frequently.

“I would never have visited my mom if I hadn’t put reminders in my calendar” So what ? Don’t all our important activities deserve a spot in our calendars in the crowded lives we lead ?

Everyone does the best they can with the knowledge they have at the time. Extend yourself. Insuring a full life for a loved one with Alzheimer’s is not a burden. It is bringing joy to someone who once did the very same for you. Do it, now. While you can.

And we are always here for you. ■