For the past twelve years, I have been the primary caregiver for my wife who is living with
Alzheimer’s. The years have not been easy. They have been filled with both heartache and joy.
They have also been years in which I have learned a great deal about myself and the issues
involved in caring for a loved one who is steadily fading away. In looking at the following
lessons, do not assume I have done them all. That is far from accurate. However, I learned both
from what I did and what I was unable to do.
Among the lessons I have taken from this process are:
- Allow yourself to be angry. You will get angry both at your loved one and at yourself for getting angry. Allow yourself the anger. You can’t stop it, but you can recognize what triggers it and can prepare yourself for the moment. For me, it was the same question or statement over and over again. In time the anger will begin to dissipate, and you will be kinder to yourself and less frustrated and annoyed with your partner. Your partner is not doing it to drive you crazy. Alzheimer’s is taking hold and will not let go.
- It does not get better. Alzheimer’s is one of those diseases for which there is no cure. So your loved one is not likely to get better. The most you can hope for is that they do not deteriorate too quickly and you can have them with you for an extended period of time.
- There is no formula. Alzheimer’s does not progress in any one specific way. Everyone you speak with will have a different story to tell. Some progress quickly – others do not; some are aggressive – others kind and gentle; and some are able to eat their meals – others require liquefied food or being fed. Some change almost daily. This can be frustrating as it makes daily planning very difficult.
- Look for resources in your community. We have found so many great programs at museums, local concert halls and private organizations. Sandy loves to sing, and she is part of a chorus that provides so much pleasure for her and for us when we go to her performances.
- Hire an aide. If you have the financial resources available, hire an aide. Doing so will make your life a great deal easier. The aide will give you free time as well as doing those tasks that you wish were not part of your day. Most importantly, allow the aide and your partner to build their own relationship. The quality of their relationship in no way diminishes you. In fact, the exact opposite is true. Your goal is twofold: to have them get so comfortable with each other that they can go on their own; and you are comfortable allowing them to do so. If all works well, the aide provides you with the freedom you need to recover and to be ready for the next day. Except for certain doctor’s appointments, my wife’s aide takes her everywhere.
- Give your aides their freedom. Allow your aides the freedom and responsibility to do their job. In the beginning I spent more time with my wife and her aide, but as time went on and my trust level increased, I have spent less and less time with them.
- Learn from your aides. Your aides bring a lot of experience to the job. You are not their first assignment. Watch them and learn from them. Do not be afraid to ask them questions as to why they are doing certain things. All of the aides we have known have been more than willing to share their knowledge.
- Embrace the cultural differences. As our aides represent countries from every corner of the globe- Georgia, Mexico, Nigeria, Sierra Leone, Mali, Haiti, and Guyana, we’ve been privileged to embrace many aspects of these varied cultures. As food is a universal language, we’ve taken advantage of learning about and enjoying foods we’d never have otherwise experienced. As a result, a new world of foods has awakened our palates.
These varied cultures now occupy an integral part of our lives, and what fun it’s been. Our aide from Guyana has been with us for over five years. Our aides have attended bar mitzvahs, graduation parties, Passover dinners, birthdays, bridal showers ,and family barbeques. They have all become a part of our family. - Get out of the house. Get out as frequently as you can. It is very easy to stay home. Watching television can be a safe way to zone out. If you have hired an aide, plan activities for the three of you. It need not be something fancy – sitting in a local park can be ideal. Try to go to those places that you enjoyed in the past. They have the potential of bringing back happy memories. We go to modern dance performances as Sandy still seems to enjoy it. We sit in a row that does not require walking up any stairs, and our aide comes with us. We are lucky we are within walking distance of two dance theatres.
- Go out for lunch. It has not always been easy but we make sure to go out for meals several times a week. Lunch is usually the easiest as there are fewer people in the restaurants and many places have lunch specials. It’s good to frequent the same restaurants so that the staff become familiar with you and your situation. We have found restaurant staff to be very helpful and understanding.
- Talk to friends. Tell your friends what is going on with your loved one. The more they know the more they will be able to help you. For a number of years, we continued going to the theatre with friends. We were three couples, and the women were wonderful. If my wife needed the bathroom, one of them would always go with her. It was a wonderful statement of love and caring. Tell friends what your partner particularly likes to do. One friend always sings with her.
- Speak with family members. As with friends, family members can only be helpful if they know what is going on. Do not sugarcoat what is happening. Let them know how they can be of help. We spent two weeks in Europe with family members. Prior to our departure, we spent several hours talking about what was happening and what they should expect. This is a trip we could not have taken if family members had not traveled with us. Speaking with family members has also allowed family functions to be less filled with tension and more enjoyable.
- Find time for yourself. This is a must because you will need it. Do something that gives you pleasure. Go to a museum, take a walk, go to lunch with friends, anything that gets you out of the house and away from your day-to-day responsibilities. And make sure you keep in shape.
- Find a support group. Every city has support groups. Do not join just any group… find one that works for you. They are available both in person as well as virtually and at all hours of the day and evening. Do not let this opportunity pass you by.
- Limit virtual programs. Virtual programs have their place. Especially for those of us with a limited ability to get around. Try to balance the virtual programs with in-person activities. The latter provide a warmth and intimacy that virtual programs cannot match. Our experience is that they have made a real difference. Many cities offer programs and activities specifically for people with Alzheimer’s and dementia.
- Make your home Alzheimer’s safe. As Alzheimer’s becomes more and more a part of your life, the need to make your house safe becomes more pronounced. We have added bars in the shower, a shower seat, special seat on the toilet, removed carpets where appropriate, and added an alarm system should my wife decide to take a late-night walk. Yes, it happened. As another act of love, friends purchased a recliner for my wife. Other options are to add ramps and bed rails.
The one abiding truth is that everyone’s story is different and that you will be on an emotional
roller coaster from early in the day to the time you turn out the lights — and often after that.
Look for the joy! Caregiving is filled with heartache and sadness. However, it does have
moments of joy. Savor those moments and share them with others. It also provides real
opportunities to learn and grow.
Dementia stripped away everything my mom once was. ‘Get In The Boat’ reveals our resilience and determination. As my dad, Richard, said, ‘The game of marriage is over. Now, the vows become real.‘