Earl’s Story as an Alzheimer’s Caregiver to His Mom

Alzheimer's Caregivers BlogIn 1997, I came home to Houston Easter weekend for a visit to find my mother not doing well. The previous fall she had experienced the loss of three of her siblings from various ailments ranging from cancer to simple old age. The toll it took on her was more than she could bear. My father had passed away a decade before from Alzheimer’s, and having helped my mother through the disease with him, I very quickly recognized some of the telltale early symptoms. I was able to convince her to get checked. The diagnosis was dementia or Alzheimer’s; it was too early to say exactly, but treatment began immediately.

I returned to Tennessee, where I was living at the time, and informed my boss I had to go back to Houston. He gave me a leave of absence immediately; that was 10 years ago, and what a journey it has been. Certainly, it may be the longest leave of absence on record.

Alzheimer’s, as cruel as it is to the person who has it, is not an immediate death sentence. It is gradual, and it is sad to see your loved ones lose pieces of themselves. But there are many things beyond medication that can be done to help compensate for loss of memory.

I am a professionally educated food service manager with over 30 years in the food service industry. I was trained to cook by two chefs from Europe, so I know a lot about the value of eating a healthy diet. I also know a lot about what foods to buy.

I am a creature of habit who believes in routine. As it turns out, it is vitally important for people with Alzheimer’s disease to maintain a consistent daily routine. Life as it currently is needs to structurally maintained as long as it can be, with no changes. The statement, “If you don’t use it, you will lose it” is especially true for people who have Alzheimer’s.

The mind needs to be exercised. If you do not subscribe to the newspaper, do so if you have just been diagnosed. Read the entire paper daily with breakfast. Start doing the crossword section after dinner. After opening the paper, read the date and the day of the week out loud. Doing so keeps you connected not only to current time but to current events. Read the front page’s main article out loud daily as well. The reading part of the brain and the speech part of the brain use different centers. Using them together is vital to keep the brain exercised.

Buy a calendar and nail it to the wall by your bedroom. Attach a red marker to it with a string. Write any appointments (doctor, haircut, etc.), and each night before bed mark through the day that just ended and read aloud what is scheduled for tomorrow. When you wake up, read aloud today’s day, date and appointments.

Medications must be taken daily at the proper time and at the same time. There needs to be three square meals eaten at the same time daily along with medications. Routine is your friend with Alzheimer’s. The medications that help with symptoms work best when taken properly. The body also feels better when it is in a routine, especially the older the person is.

If you do not have a PDA or a cell phone with calendar features, get one. Have someone program the time to take pills, doctor appointments, hair appointments, meal times, etc. A PDA or your cell phone calendar feature is your friend. Use your tools to help keep things straight and on routine. In the early stages, before we had home health care, I would call my mother and tell her to eat the lunch I prepared and to take her medicine.

With paying bills, autopay is your friend. Set up as many bills as possible on autopay. Sit with the person who has Alzheimer’s each month and do the bills with them, Have them write all the checks and balance the checkbook as long as they can do so. This makes them feel more in control. They need to feel they can still do things. Positive reinforcement is vital as they complete what once used to be easy tasks. They need to be told you are proud of them as they complete tasks. When they say they do not want to do something, tell them you can’t do it without their help or say, “Let’s do it together.” Make them feel like they are a vital part to the task getting done.

Durable power of attorney and medical power of attorney need to be established early on. It is a difficult thing to discuss and an even more difficult thing to do for everyone, but present the need in a loving, caring way. Anger may well up; do not return their anger. Respond only with caring, and let them know you love them and want to protect them from harm. To do that, they need to have an advocate who will look out for them.

Be firm in not bending on the “use it or lose it” principal. You will be tested and tempted daily to do more and more for them. Resist temptation and patiently be firm and resolute that they must do the task at hand. Again, positive reinforcement is vital. The person with Alzheimer’s needs to feel wanted, appreciated and, most of all, complimented when they find the courage to go on.

Grant a day of rest in the later stages. They need one here and there. We all do, and they certainly will. Depression does set in, and medication for that may be required. There is a big difference between “I give up” and “I am depressed and I give up.” Let the doctor know if you feel they are depressed. Rest is critical to not getting run down and depressed.

The Marines have a saying about adapt and overcome. That is what you must do as the disease progresses. Accept the fact ability will diminish, and accept you must adapt with those changes. Be willing to go to the next level of support. All things in combination are why my mother is still with us and in her own home. I do have caregivers who watch her while I am at work, but home care, as long as it is possible, is what the person with Alzheimer’s ultimately needs the most because it is where they feel the safest.

Elayne Forgie has been a professional geriatric care manager for over 20 years and was a founding Board Member of the Florida Geriatric Care Managers Association. She is the President/CEO of ElderCare at Home, Inc. and The Alzheimer’s Care Resource Center. Information on this website or contained in this article is not intended to replace the medical advice of your doctor or health care provider