Diagnosis Alzheimer’s – Now What? A Family Caregiver’s Goodbye Journey

Because there is another person diagnosed with Alzheimer’s every 68 seconds in the United States alone, it is likely that someone close to you will be newly diagnosed at some point. An estimated 5.2 million Americans of all ages will have Alzheimer’s disease in 2013.

If you are a family member, such as a spouse or child, who is primarily responsible to provide care for the newly diagnosed person, you may be asking yourself “now what”?

There are resources available to you that can guide you but most are directed to those who have been suffering and coping with the diagnosis for some time and are actually in the later stages. You however, more likely need information for a caregiver dealing with new onset in the early stage to help you decide what needs to be done now.

Your loved one may not appear to others to be changed or battling a disease. Only you know the depths of the changes occurring to your loved one and what trials you have already undergone just to have received a diagnosis.

Recently I read a book that provides insight into this very dilemma. The book written by Dorothy Webb entitled When Goodbye Begins: Sharing Life With Dementia relates the story of her journey after receiving a diagnosis of Alzheimer’s dementia in her spouse. It was very insightful and provided some good strategies to help you cope with the diagnosis and decide how to move forward.

What to Expect After the Diagnosis

These are among the expectations family caregivers should have, based on Dorothy’s experience:

  • It is true that your loved one remains the same after the diagnosis. He won’t appear as if he is ‘ill’ and doesn’t seem to others to be changing. The person himself is not usually bothered by the cognitive changes as he finds ways to cope with his forgetfulness.
  • It is you the caregiver who covers for the newly diagnosed. You will cover for their memory loss by reminding them about the details of their life, where the keys are, how to find their way home when they are driving home with you as the passenger, when to keep an appointment, and even when it is time to eat. You are the one answering the same question fifteen times a day.
  • As a spouse, you are the one who is fully now responsible for all the tasks that in the past were shared or as a child, were done fully by the afflicted person.
  • You are the one who begins the grieving process over the loss of the person you love, the life you lived and the uncertain future.
  • You are the one who has to tell others if that is what you decide or tell no one if you choose that. Dorothy Webb supports the position in the book that caregivers should tell it like it is to everyone who will listen including the person afflicted.
  • You are the one who will have to handle all the finances, housework, medical appointments, entertainment of the person diagnosed, home maintenance and all legal issues to move toward the future.

Advice for Coping

Dorothy Webb, who has walked in the shoes far too many family caregivers find themselves wearing, advises the following:

  1. Step 1 – deal with your emotions. Right after the diagnosis you will be in shock and denial. You may feel sad, lonely, scared and experience the stages of grief. She suggests that you face each emotion head on. Don’t deny your emotions or try to bury them. Talk with others, especially family members or counselors, maybe consider keeping a journal of your thoughts to help you process them in order to move on. You likely won’t be able to share these emotions with your loved one so it is best to seek out a support network from the beginning.
  2. Step 2 – tell as many people in your life as you can including the one diagnosed. Be sure everyone is aware of the situation. Remove the stigma associated with the disease. If you have people who come forward to be in your network and assist you in any effort you require, wonderful! You will likely find that many people abandon you due to their own inability to handle the situation. You may also find people in your life become a hindrance to you. It’s good to find this out now and not waste time later trying to get them to visit, help or communicate with you as time goes on.
  3. Step 3 – learn all you can about the diagnosis, possible treatment options, what the future holds, and how to deal with situations before they arise as the disease will only progress — never go away. Use the resources available to you, such as the Alzheimer’s organization nationally and locally, support groups and books such as this one and others.
  4. Step 4 – get personal and legal affairs in order now. Make a will, healthcare and financial power of attorney (durable), DNR, banking, retirement plans, insurance and all other documents should be completed while your loved one is still able to be involved. You may want to seek the advice of an elder care attorney to guide you through the requirements in your state. You also want to plan for the scenario that you will need someone else to care for your loved one. What if they outlive you? Who will care for them?
  5. Step 5 – create a schedule of daily and weekly activities so that you can get your loved one into a routine. This will help you keep them occupied, give them something to look forward to each day and also allow you to complete the activities you need to each day. People with dementia need to have a routine: when to eat, when to nap, when to dress, etc.
  6. Step 6 – care for yourself as a caregiver. You will need to schedule time for yourself even if it is only ten minutes a day, keep yourself healthy so you can continue to care for your loved one, seek support and respite when you need it and build your network for when you need to reach out for help.

Alzheimer’s, or any type of dementia, because it is a degenerative progressive disease that can last for many years, will burn any caregiver out if a plan is not formulated for handling the demands of every day life. You have to deal with your emotions, your physical and mental exhaustion and take personal breaks without guilt in order to be the best caregiver you can be.

This commitment is one that you will never regret doing and will bring back joy to you exponentially compared to what you give.

Thank you for caring – and thank you for sharing your experience with the rest of us, Dorothy!