Letting others in can be an important part of coping with an Alzheimer’s diagnosis — we all need friends and family to lean on, and fighting the battle alone is almost always a losing proposition. It’s not for everyone, though. “Some people are simply more comfortable with being private, keeping everything private,” longtime caregiver and author Carol Bradley Bursack said. “Other people are more comfortable with brisk sharing — this can even be a difference between men and women.”
“It’s a process. It depends how well you know the people, how much you trust them. It seems to me you’d start with of course the spouse, then go on to the children, expanding gradually to a circle of very close friends. Then once you get a feel for the kind of support you get — or don’t get — you may become more brave, or more fearful.” For those that decide to share their Alzheimer’s diagnosis, it’s important to have a plan and be mindful of the implications of going public.
“The major problem is that there’s a tremendous stigma when it comes to anything to do with the brain. It’s wrong, but it’s always been there.” Even though Alzheimer’s is a physical disease, the very fact that it affects your brain means that it’s instinctively frightening — and not just because of how little we know about the way the brain operates.
“I saw it with my dad when he had a brain surgery…and something went wrong, and he ended up with severe dementia overnight. And I saw people who just greatly respected him, worked with him for years, loved him — but they were afraid to come up to see him because they hated seeing him like that.”
“I also think it’s one of other people’s greatest fears,” she said. “So when you see somebody, this is your friend, your family, and they tell you they’ve got Alzheimer’s, there’s something inside that person that says…oh my gosh, that could be me.” That uncertainty means that it’s difficult to predict how anyone will respond to the news, and some of the possibilities aren’t very cheerful. Friendships could be forever altered, family relationships strained, and legal proceedings enacted — all because of the stigma surrounding Alzheimer’s. “All of these things are very grounded, actually, and unfortunately rather realistic, so this makes [telling others] a difficult thing to do.”
It won’t be easy, no matter how you slice it, but you might be able to make it less discomforting by thinking carefully about who you tell. “Protect yourself, to some degree. Some people may not think through the stigma, may not think through the fact that some people will be so afraid of you that they will pull away. It’s better for people to be thoughtful, and to accept the reality that there’s a stigma, unfortunate as it is.” It will also help to approach the discussion in a constructive way:
- Make sure you have the conversation in private, so you can both speak freely.
- Let them know in advance that you have something you need to tell them, and that you’d like them to hear you out.
- Give them time to react, and let them ask questions if they wish.
- Be mindful that this is a shock for them, and try not to be judgemental of their reaction.
When it comes to your family, “alot depends on if we’re talking about younger onset Alzheimer’s, or if we’re talking about the more traditional Alzheimer’s when you’re older and you’re probably retired,” Bursack said. “Both are horrible. Both are devastating diseases to the family and the person, but younger onset is even worse.” In many cases, those with younger onset Alzheimer’s might still be raising a family and could be the primary breadwinner in the house, making it a much more difficult conversation. An Alzheimer’s diagnosis at a young age means your whole life will change.
- You’ll need to establish legal safeguards, like durable powers of attorney, to ensure your family can manage your life when you can’t.
- Income becomes a concern if you’re forced to leave your job – how will everyone survive?
- You’ll have to decide what kind of care you want, and even if you have a choice.
- End of life care becomes a pressing concern that can’t wait 20 or 30 years.
All of this adds up to a scary situation.
“Adult children suddenly realize, ‘Eventually my dad isn’t gonna know me. Eventually my dad isn’t gonna know his grandchildren.’ A spouse has to come to terms with the fact that eventually, this person I’ve been married to for decades won’t know who I am.” It’s not all bleak, though. For those who are diagnosed early, it can be a catalyst to do things that you’ve always wanted to. “You can not just make plans for negative things, but make plans for positive things. Things you wanted to and you were putting off, and you realized, ‘Maybe we can still do it, but we don’t have time to put it off.'”
What if you have young children?
There are no hard and fast rules for what will almost surely be the most difficult of all the conversations, but it’s important to remember that young children don’t have a solid grasp on the world yet. They may not have the context necessary to process the news, and providing the right information and a well-placed support structure can help.
“They need to be educated,” Bursack added. “I think at times, depending on the family relationships, it might be good to have someone there besides the parents — maybe a grandparent. Somebody else that can give the child a sense that ‘There are a lot of people here for me.'” “Children need some protection; they need some feeling that life will go on and they aren’t going to be abandoned because their parents is ill and will become much more so.”
Your friends will likely be the second group of people you tell, so you’ll have some practice — but that won’t make it much easier. An Alzheimer’s diagnosis can drastically change your friendships, often for the worse.
“I saw it with my dad when he had a brain surgery…and something went wrong, and he ended up with severe dementia overnight. And I saw people who just greatly respected him, worked with him for years, loved him — but they were afraid to come up to see him because they hated seeing him like that.” “So people began to stay away, not because they’re bad people, just because they didn’t know how to handle it. Longtime friends — it takes a very strong person to continue to keep visiting someone who may get so they don’t remember you, who can’t remember the same things you remember, it takes a lot of dedication.”
This doesn’t mean that they think any less of you. They’re simply “hurting for you, and hurting for themselves,” Bursack added.
For those who spend a great deal of time at work, your employer might actually be the first to notice their symptoms. This could make the talk equally easier or more difficult, depending on their outlook.
“Owning the disease and telling your employer is basically saying, ‘I’m only going to be able to work so long, I may need help’ and things are going to change.” Some of the response depends on what you do for a living, Bursack notes. Those with responsibility for human life — say, doctors or those who operate heavy machinery — may have to change their job entirely, while others can ask about getting help at work.
“They can’t fire you because you suddenly say, I have an Alzheimer’s diagnosis…but you know right away they’re starting to replace you in their brains, and they may not respect your work as much. They have these preconceived ideas.”