When Ronald Regan announced to the world that he had been diagnosed with Alzheimer’s in 1994, he joined one of approximately 2 million American’s suffering from this degenerative brain disease (Rothman, 2016). A little over twenty years later, we now have more than 5 million people who have been diagnosed and are in various stages of the disease process. Prolonged life expectancy, the number of baby-boomers reaching an older age, and the advances in science and early detection have all contributed to this increase.
While scientists did not used to know nor understand what was happening throughout the process of this disease, Alzheimer’s is now known to be an excess of extracellular amyloid beta in the grey matter of the brain, also known as “brain plaques”. These plaques inhibit the ability for the brain to form new connections (as in new memories), and slowly the cell degeneration continues as the brain begins to decline.
Most of us have had experience with this sad and often devastating disease and if you have not yet, you will. Scientists expect the number of diagnoses of Alzheimer’s disease to continue to rise as we are living longer than ever and while there is much effort and research being put into finding a cure, there is not one in our immediate site.
So what can we do to help those we love when they have been diagnosed with Alzheimer’s?
The best place to start is to tap into the resources that are available to you, and they are abundant! Not only are there countless online resources for ideas and suggestions in caring for your loved one, but most cities have support group meetings for both the person afflicted with the disease, as well as their families. The National Institute on Aging has an easy-to-follow care guide in helping to better understand the disease process in addition to great tips and ideas on what you can do as the caregiver.
When looking for local support groups, the Alzheimer’s Association has a national registry that will help you find the closest group. This can make all the difference in helping you to gain both a better understanding of the disease process as well as helping you to know that you are not alone. There is so much learning to be had in other people’s experiences and support groups are a great way to help as well as learn from others.
Caring for a loved one with Alzheimer’s is usually not a part-time job. As the need for help increases, it is important to make sure you are still taking care of yourself in order to avoid what is known as “caregiver burnout”. This is a very real issue that occurs when there is an imbalance of your output of care and the care you are giving yourself. If all of your time is going to care for your loved one and your life is put on hold (without your own needs being met consistently), then it is easy to see how this imbalance can tip a person over into what is often described as a “depressed” and “worn-out” state (Aging Care, 2016). Finding a healthy balance can be difficult, but it is possible. So what can you do?
1. Ask for help! Whether it is a family member or close friend, finding someone you trust to help you out can make all the difference. Whether it is getting out by yourself, a planned date night with your husband/wife, coffee with a friend, finding FUN is important as it will help rejuvenate and balance your hectic schedule (there’s that word again!). Making time for you should be a necessity as it will help you give the best care to your loved one. Your loved one will be in good hands with a person that you trust and people want to help – just ask them.
2. Find things you and your loved one enjoy to do together. One of my patients had a daughter that could just not connect with her ailing mother. When the suggestion was made to listen to their favorite jazz music together, everything changed and “Daily Jazz Hour” was born. This allowed my patient’s daughter to still feel close to her mother as there is often a disconnection between us and our loved one because of the nature of the disease. Whether it is music, a particular television show, looking at family picture albums, watching funny skits on the internet (this same patient loved Carol Burnett and that was another thing they would do together), finding something that you also enjoy helps to keep that connection there.
3. Try to focus on the good things. This can be difficult when the person you love is continually declining. They are also not the same person that they used to be and that can often introduce major personality changes, aggression, and hurtful things being said. Remember that they do not mean it and by being proactive with caring for yourself and finding things you can enjoy together, that balance will contribute to being healthier in your perspective of what is going on regarding the disease process. Life is hard and Alzheimer’s is degenerative – focusing on the good things will not make up for the struggles, but it can be a small silver-lining in your perspective.
“I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead. Thank you, my friends. May God always bless you.” These are President Regan’s closing words in his speech given in 1994.
With science continually looking for cures and treatments and the improvements in social support for those suffering with this disease, a bright dawn is certainly possible. Through awareness and true caring, great changes are made. #Endalz
Aging Care. (2016). Caregiver Burnout. Retrieved from https://www.agingcare.com/caregiver-burnout
Rothman, L. (2016). Read Ronald Reagan’s Letter to the American People About His Alzheimer’s Diagnosis. Time Magazine. http://time.com/4473625/ronald-reagan-alzheimers-letter/