A loved one’s diagnosis of Alzheimer’s disease is one of the most devastating and heartbreaking pieces of news you may ever have to face. Each day will bring on new challenges. Although this will be a life-changing and trying journey, Alzheimer’s Project, Inc. has compiled a list of 5 steps that you should take if a loved one has been diagnosed with Alzheimer’s disease.
Accept the diagnosis.
First, allow yourself time to let reality sink in. Whether this diagnosis comes as a surprise or more of a confirmed suspicion, absorbing the changes ahead is a critical process. It is tremendously important to give yourself time to adjust to the magnitude of this disease. Commonly, a family member may have feelings of denial, fear and grief when faced with this diagnosis, and it is vital to understand that it will be one of the most overwhelming progressions you may ever have to endure. Hard times are on the way, but it is important to make the most of every moment. The President at Alzheimer’s Project, Inc. and Elder Law attorney, Victoria Heuler advises the following:
“Although heartbreaking to receive, having the diagnosis and knowing what the problem is, leads quickly to how to treat it and cope with it. I just met with a client who for several years did not know what was wrong with him and was relieved when he received the diagnosis of probable Alzheimer’s disease.”
Knowledge is power.
Although it may be very difficult at first, learning as much as you can about the disease will help you get through this process. You may find yourself overwhelmed with questions and concerns. How will our lives change? How long is life expectancy after diagnosis? How can I keep my loved one comfortable? There are many resources out there to help you grasp what exactly you’re dealing with. Getting to know the common stages of Alzheimer’s disease, caregiving practices and available treatments are very important. In addition, this gives you the opportunity to learn of stimulating activities and common practices that can help your loved one stay active and comfortable. Heuler continues:
“For the caregiver and family, being informed as quickly as possible is critical. The knowledge brings a sense of security and power in the face of an otherwise powerless feeling when the diagnosis is received.”
Alzheimer’s Project, Inc. provides a resource manual full of information for caregivers in our community here: http://www.alzheimersproject.org/files/2012_adrmbb.pdf.
Don’t neglect your needs.
It is critical to understand that taking care of yourself is the most important aspect of caregiving. There are many roles you may have to take on as an Alzheimer’s caregiver: cook, maid, accountant, chauffeur and even nurse. As the disease progresses, your loved one may not recognize you, remember what year it is or know where they are. Often this perpetual stress can wear on the caregiver.
Your mental and physical well-being is important for the cause, and there are many warning signs of caregiver stress. Difficulty sleeping, staying focused or chronic headaches or mood swings can all be attributed to the stresses involved with caregiving. Take a few minutes each day for yourself to do something you enjoy, talk to friends and family members about your journey in caregiving and most importantly, reach out to local caregiving support groups to ease your worries. Heuler continues:
“I always remember the comparison to instructions given on an airplane that the parent (i.e. caregiver) must put the oxygen mask on themselves first before placing the mask on their child. This is so true of caregivers of persons with Alzheimer’s disease. The caregiver must take care of themselves in order to be healthy as long as possible for their loved one with Alzheimer’s disease. Alzheimer’s Project is designed specifically to be the support for the caregiver so the caregiver can stay healthy and continue the vital work for their loved one.”
Alzheimer’s Project, Inc. provides a network of support as well as respite sessions for caregivers in the Big Bend area. To learn more about the free services offered to caregivers, visit www.AlzheimersProject.org/services.html.
Handle legal matters as soon as possible.
As the primary caregiver, it is important to handle all legal obligations: contract a living will, establish power of attorney and manage significant accounts and records. This is best to handle as soon as possible because one may never know the pace at which the disease will progress. While your loved one is still able to make important decisions, contact an attorney to help draft the necessary legal documents. These documents will help sort preferences for treatment, organize end-of-life wishes and establish any necessary trusts.
In addition, Aging With Dignity is a non-profit organization that strives to affirm and safeguard a patient as they age. Started by Jim Towy while volunteering with hospice patients, this organization provided inspiration for the Five Wishes program. This is a program written in easy-to-understand language that addresses five main areas to address personal, emotional, spiritual and medical wishes, available for everyone 18 and up. This program assists in carrying out the wishes for a patient who may not be able to makes these decisions in the future, and abides by state laws to have the same effect as a living will. The five areas covered are: 1) The person to make my care decisions. 2) What type of medical treatment I want to receive. 3) How I would like to stay comfortable. 4) How I wish to be treated. 5) What I want my loved ones to know. Not only will this help avoid confusion later on, but it will allow you to rest easy knowing you are doing everything your loved one wishes. This program is available in print or online.
Have fun while providing care.
Physical exercise and mental stimulation is one of the greatest gifts you can give your loved one throughout this process. Picking a simple task or hobby specific to your loved one’s needs and interests is very important to an Alzheimer’s patient. Even the simplest of tasks can provide a sense of accomplishment and stimulation. Play up interests in your loved one’s past. If they enjoy art, give them crayons or watercolor. If they love music, pick a favorite song from the past and sing with them. Do activities together, such as baking or going through old photo albums. This stimulates your loved one and can often distract them from feelings of anger or depression.
“As difficult as Alzheimer’s disease is on everyone in the family," said Heuler,"it can be a time of joy and remembrance of what makes your loved one so special. It usually helps in dealing with difficult situations to stay positive and to use humor whenever possible! Enjoy the gems that will come from time to time and maybe even record them in a notebook to look back on later and remember the joyful moments."
If you have a loved one that has recently been diagnosed with Alzheimer’s disease, there are many steps you can take to alleviate stress and frustration. For more information about Alzheimer’s Project, Inc. and its many resources, visit www.alzheimersproject.org or call us at (850) 386-2778. You can also like us on Facebook at https://www.facebook.com/pages/The-Alzheimers-Project-Inc/.