Contrary to popular belief, Alzheimer's disease is not just a disease of the elderly. Early onset Alzheimer's disease accounts for 200,000 to 500,000 individuals - all under the age of 65, and some in their 30's, 40's and 50's.
If you are one of the thousands currently diagnosed with Early Onset, it is very important for you to realize that your life is not over. You are probably full of questions, concerns, fear and frustration. You are not alone. AND, you can still live a meaningful and productive life by engaging in the activities and interests you enjoy. The key is to remain active and involved, relying on your family and friends to support and comfort you. Your inclination may be to never seek help. That will need to change. Your friends and family will most likely be very willing to be your care partners as you navigate this new journey.
Living with Early Onset means dealing with some life transitions and new roles, much sooner than you may have anticipated. It is important to keep the following points in mind when facing this disease.
- Early Onset affects each person differently and everyone's symptoms will vary.
- You will have good and bad days. Take them one at a time.
- You are not alone - there are people who understand what you are going through and can help you and your family.
After receiving a diagnosis of Early Onset Alzheimer's there are a wide range of emotions you may experience. Understand that it is normal to have any or all of these emotions:
- Feeling isolated; as though no one understands how you feel
- Fear of the future
- Frustration that you can not cure the disease
- A sense of loss over status in the community
- Anger over the change your life will take; one that is very different than the life you had planned.
- Fear of losing your friends, family, job and a fear that you then might not be able to support your family
Share and Communicate
It is important NOT to keep your emotions to yourself. Contact us for resources and support. Our Care Consultants are ready and willing to meet with you, talk with you or just listen. Talk with your family and friends about your emotions. If you are not able to talk with family or friends, consider clergy or even a counselor. We also have a library with books about all aspects of the disease, some of which are written by individuals with Alzheimer's. Just stop by the offices, or call us to check out a book.
There are various message boards and blogs that will help you communicate with other Early Onset individuals. Look under the Helping You section of www.wvalz.org to join in the message board for those with the disease. In addition, we may be able to put you in contact with others in our local area with Early Onset.
It is also important to realize that the diagnosis of Early Onset will not only impact you, but your family as well. If you are married, your spouse may have to change his or her role. This may mean your spouse begins to take on more tasks that involve managing the household finances. This will be a significant role change for your spouse. He or she may feel overwhelmed, while you may feel guilty or frustrated at having to give up these duties.
Your spouse may feel loss at the changes this disease will bring to your relationship; this can also include sexual changes. You may want to initiate physical intimacy more often, or you may not be interested at all since the diagnosis. Once again, communication is the key to working through these changes. In order to help deal with these changes you need to:
- Continue to participate in all the activities you can and modify the activities as needed with your changing abilities.
- Tell your spouse what he or she can do to help you.
- Work with your family and gather resources that will be beneficial to you when you need a caregiver assistance and possible respite care. Even gather adult day care information.
- Discuss ways you and your spouse can fulfill the need for intimacy. If necessary, seek counseling to discuss the issue.
- Encourage your spouse to attend a support group.
If you have children, no matter what their age, they will experience varying emotions about the disease. They could become fearful they will get the disease, they may become resentful of you for being sick and they may even be embarrassed by you. Our library has several books specifically for children explaining the disease and the changes they may see in their loved one. It is important to address all of the concerns by:
- Talking openly and honestly with your children about the changes you are experiencing.
- Asking your children what their needs are and find a way to meet them.
- Informing school officials of the situation and educate them on the disease.
- Keeping a journal of your thought and feelings that will come to serve as a comfort to your children.
You will also need to educate your friends about the disease. Invite them to attend Alzheimer's educational programs with you where they can learn more about the impact the disease has on you and how to communicate more effectively with you. It is also extremely important to tell your friends exactly what they can do to help and support you.
If you are currently employed, you will need to consider when and what you will tell your employer. You will also need to consider when you can no longer work. Until the point comes that you can no longer work, work as long as you and your physician feel you are able to. It is important to keep some normalcy and routine to your life. If necessary, use notes to help you perform your job. Discuss and be open to the possibilities of switching jobs to something that would better suit your abilities. Alzheimer's disease is considered a disability and is therefore covered under the Americans with Disabilities Act and under the West Virginia Human Rights Act. Therefore, a diagnosis of Alzheimer's is not reason alone to be dismissed. In general, the employer has an obligation to conduct an interactive interview with the employee to discuss any reasonable accommodations the employer may be able to make so that the employee can keep his position. For example, if you are a truck driver and lost the use of your legs and it was deemed that you could no longer drive the truck, but could work as the dispatcher, those accommodations could/should be made. However, you must be able to fulfill the reasonable requirements fo the job. If you cannot, then you can be terminated and the employer is under no legal liability.
Also, consideration needs to be given to the fact that Alzheimer's is a progressive disease. What changes and accommodations might be reasonable now, may not be reasonable as the disease progresses, therefore the situation should be periodically reviewed.
In addition, under the Family Medical Leave Act, depending on the size of the business and how long the individual has been employed, the caregiver of a person with Alzheimer's is entitled to up to 12 weeks of unpaid leave to care for their loved one.
Finally, you may want to research early retirement options.
Leagal and Financial Planning
With the diagnosis of Early Onset comes the absolute need to plan for the future. You may need to sit down with an attorney and designate someone to be your financial power of attorney. The attorney can also help you arrange any other financial matters you need to take care of.
You also need to take this opportunity to set forth your advanced directives and designate someone to be your Medical Power of Attorney. Now is the perfect time to sit down with your family and discuss your desires for medical interventions, such as CPR, Life Support, Feeding Tubes ect. While these interventions will not be needed at early onset, there will come a time when these types of choices may need to be made. It will be much easier for you as well as your family, if you have already made your wishes known. There are advanced directive forms to complete and may choose to complete what is known as a POST form. Both of these forms allow you the opportunity to express your wishes. Remeber, there are no right or wrong choices, it is absolutely your personal preference and belief. YOu may contact us for these forms or to ask questions. Again or Care Consultants will be happy to help you consider the options and make choices that are right for you and your family.
It is important to take care of yourself. Have regular check-ups. Take medications as prescribed, rest when you are tired, attend to spiritual needs, reach out for help when you need it and minimize stress in your life.
Most importantly, please remember you are not alone and you are still you. Mary Blake Carver is 55 and has Early Onset Alzheimer's. In March 2007 issue of a neurology magazine she was quoted as saying she often wants to shout at her friends, her children and her husband that I AM STILL HERE! We understand. We are here to help. Don't hesitate to call us at 1.800.491.2717.