Alzheimer
The latest research that earlier diagnostic testing for Alzheimer’s disease will soon be available and the potential number of individuals who could be affected (whether directly or as or caregiver) are simply staggering. Yet we must focus on the promise these developments may hold: with earlier diagnosis will come earlier and more effective treatments, and the very real potential of the delay of symptoms and prolonged quality of life.
Currently, family members often have to rely on confusing and conflicting early signs of the disease: increasing forgetfulness, inability to follow directions, difficulty completing everyday tasks, trouble paying bills, getting lost on familiar routes, becoming more withdrawn and self-limiting favorite social activities. Ironically, these symptoms can evoke two contrary reactions: terror (that an Alzheimer’s diagnosis is inevitable) or denial (this is just a part of aging).
When a loved one begins to exhibit these symptoms, it is important to get a thorough evaluation by a qualified physician -- these are not the usual signs of getting old. Concerns need to be addressed and given appropriate consideration. Discuss your concerns with the individual beforehand and plan to attend the examination with them. If your loved one is frightened or in denial, do your best to assure that a conversation with the doctor is the best way to dispel fears and take appropriate action. Develop a list of questions, examples of behavior, and concerns, and ask the health care provider to address them. Allow your loved one to answer the physician’s questions on their own; if they are unable to do so, the physician should ask you for what you have observed. Write down the physician’s responses so that both you and your loved one have an accurate record.
When the diagnosis of Alzheimer’s disease is made, it is important to begin to take action:
- Learn all that you can from reliable sources. Health care professionals experienced in the care of individuals with Alzheimer’s disease, trustworthy internet sites and appropriate support groups include these: The Alzheimer’s Association @ www.alz.org, which provides support for the families and caregivers of individuals with AD and local chapters for resources, support groups and educational programs; the Alzheimer’s Disease Education and Referral Center @ www.alzheimers@nia.nih.gov, which offers information on the diagnosis process and treatment options; and the Administration on Aging @ www.aoa.gov, which supports the caregiver and provides direction on available services and support.
- Begin to plan for the future. Obtain honest and reliable financial and legal advice. Always allow the individual to make choices while they are still able to, especially regarding their desires for long-tem care options and advance directives such as durable power of attorney for health care decisions and financial power of attorney. You can introduce these topics over time, be careful not to overwhelm your loved one with too many consequential decisions all at once.
- Learn what is available in your area. Options may include the local chapter of the Alzheimer Association, community resources, area churches, respite programs, adult day care and alternate housing options. Find out as much as you can about eligibility criteria; a single phone call can provide tremendous insight.
- Develop your support team early. The diagnosis of Alzheimer’s disease is not a cause of shame or a reason to hide the truth from those who care about you. You will need their help, so be honest with other family members and friends what you and your loved one are facing. Identify your concerns and anticipate your needs. Begin learning how to ask for and accept help from others.
- Begin to make the necessary changes. Look at your home environment; view it as a safe haven for both of you; begin the process of making and keeping it one. Are there places inside your home that will become increasingly unsafe as the disease progresses? Study the rhythm of each day; make the most of the times of day when clarity and cooperation are greater and develop routines that are workable for both of you that revolve around those times. Always know that with the progression of the disease, change is inevitable. If you develop support systems when the situation is still manageable, you can make things work when times become more difficult. Many with early stage Alzheimer’s chose to live independently as long as possible; they may need assistance with shopping, pre-planning meals and frequent contacts throughout the day to assess their well-being.
- Enjoy your time together. In the early stages the opportunity to continue to enjoy special events, trips and day-to-day activities is absolutely possible and should be pursued. When memory and ease of mobility begin to fail, make memory books together, recalling special people and events that can be enjoyed with your loved one and others who come to visit.
- Allow your loved one to control the changing stages of life. We can all remember President Reagan’s last letter to the American people. That letter allowed him to formally acknowledge his Alzheimer’s disease, say goodbye to his vigorous public life, and transition to a new, more private stage of life according to his own timeline. Very few Alzheimer’s patients need a public exit, but each needs an ability to say a gentle farewell to what was and to move on to the next phase of life, which will be more private. One gift that Alzheimer’s gives us is the opportunity to plan for that transition.
- Take care of yourself. Caregiving is a 24/7 role. Your life will change; the rewards you derive from caregiving will be hard-won. Learn to make and take time for yourself. Design a back-up plan that is easily put in place if you cannot meet your caregiving responsibilities for any variety of reasons.
The best advice is for all of us to learn to treasure each and every day always living life to the fullest.
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