How do you tell family & friends that a loved one has EOAD?
My 53 year old husband was diagnoised with Early Onset Alzeimer's Disease last Thursday (3/29/12). This was after a year of trying to find out his memory loss. My question is; what is the best way to inform everyone: a letter, facebook, phone call? Please advise!
Dear Jo Elyn:
I'm so sorry to hear of your husband's diagnosis.
In response to your question as to the best way to notify family & friends, there is no "best" way. I suggest you call each of the key family members whom you see locally and regularly, and up a time to talk with them face-to-face. For those whom you do not see regularly, call them and let them know that you and your husband have received the devastating news that he has EOAD.
For those who are acquaintances, a "group" email is acceptable if you're comfortable with that. I have friends who have notified us of similar situations and it's perfectly okay, as it allows them time to digest the terrible news and decide how best to respond. Many may say that they don't know what to say, and that's true, no one expects to hear that message regarding a young man they know & love.
In every case and situation, be fully prepared to explain what the diagnosis means, and that your husband would really enjoy seeing his family and friends, especially since his disease is so aggressive. Tell them that at some future point in time, he may no longer "be himself" and may not recognize faces or names. You want him to enjoy the best quality of life possible as early and often as possible.
When family & friends ask you if there's anything they can do, say YES!
Suggest to them that they can visit you and your husband; they can volunteer to keep your husband company for a few hours to give you some respite; they can offer to take him out to breakfast or lunch, or to places that he has enjoyed going in the past. Be honest, and tell them that as time passes, this particular form of Early Onset Alzheimer's disease can aggressively accelerate, and you and your husband will welcome their ongoing friendship, love and support in person as well as by phone and email.
If you have not yet done so, be sure that your husband and you have your finances and his advance directives reviewed by an elder law attorney, and that you have complete access, if not total control over investments, checking and savings accounts, credit cards etc. so the transition, when it occurs will be smooth and easy for you. If you don't now pay the bills, start and if necessary get some outside help so you're not overwhelmed later.
Assuming your husband knows that he has an aggressive, terminal disease, get his input on what and how he would like his days to unfold, regardless of where he is on the disease continuum as of today. Plan for the time when he may no longer be capable of safely driving, leaving the house on his own, taking his medicine unsupervised, or doing some of his activities of daily living.
Talk with the Alzheimer's Association and yes, even Hospice now, so you can have all available resources in place as this journey unfolds in your lives irrespective of when the decline begins, because it will occur at some point during the next several years.
Contacting friends and family, no matter which approach you elect to take, is a wonderful first step, but it is just that, a first step. You have to take the lead and get out in front of the future, because his disease is somewhat predictable. Having a plan and every resource available to you before you need them will make your life that much less stressful when his condition begins to deteriorate.
You also have to take the time to care for yourself, and not allow yourself to be totally consumed with his illness. Your emotional, physical and mental health as a young woman depend on you taking care of yourself even as the demands for his care increase over time.
I wish you the best, and can't begin to tell you how sad and heartbreaking it is to have to answer questions like yours "“ no one should have to face these challenges, particularly at such a young age.
God Bless you, your husband and your family.