The Heartbreak of Alzheimer’s

Dear Dr. Hurd,
I am the primary caretaker of my aging mother. My efforts and sadness are compounded by the fact that she is suffering from advanced Alzheimer’s. Unlike death, where you grieve and then, in time, return to your daily routine, dealing with my mother is like being stuck in an endless cycle of grieving, day in, day out. She doesn’t recognize any of us, so it’s like we don’t have her anymore, but every day the mourning starts all over again as we care for her. It’s almost too much to bear.

Dr. Hurd replies:

Alzheimer’s is an emotional roller coaster. The mind, as well as the body, is under relentless attack. In a sense, you’re dealing with a loved one who dies — and then comes back again, over and over.

It may sound simplistic, but say to yourself — and repeat as needed: ‘It is what it is.’ Intellectually, you know that nobody can cure your mother’s illness. But on the emotional level it’s easy to deny that fact. The resistance is understandable and natural. If it could speak, it would say, ‘No, it can’t be so. It just can’t be!’ But it is, and you’re not doing the patient or your peace of mind any favors by holding on to what can never be.

Having talked to people who have cared for loved ones with Alzheimer’s, I’ve learned several things that can make the ordeal more bearable. First, try to break apart the amount of time you spend with her. (I’m assuming she doesn’t live with you.) If you’re emotionally drained and exhausted after a four-hour stretch with her, try to spread those hours over different parts of the day. There’s no ‘right’ number of hours to spend, but the time you can handle will increase as you build emotional stamina. Pay attention to how you’re feeling after each visit and ask yourself if it was too long, or if it was just right.

Another thing to beware of is unearned guilt, i.e., feeling guilty about something over which you have no control. Though you know that you didn’t cause your mother’s illness, you’re still going to feel guilty when you’re forced to deal with her in ways you never did before. Sometimes a parent who was always sweet and loving can become hostile and aggressive. Many people feel guilty about backing away or being distant when the parent becomes this way. ‘I never had this kind of relationship with her before.’ Well, of course you didn’t. For all those non-Alzheimer’s years, she was sweet and kind, so you should not feel guilty when you’re forced to change your tone in response to her atypical behavior. You didn’t cause the problem.

Thirdly, NEVER take things personally. Many people find it helpful to think of the loved one as either ‘here’ or ‘gone,’ depending on their state of mind at the moment. I’ve heard people say, ‘I went to visit mother today. I was hoping she’d be there, but she wasn’t.’ In a sense, you have to tell yourself, ‘That’s OK. It’s not really her.’ And it’s true: The mom or dad you always knew isn’t in the room right now. In early stages of the disease, the ‘presence’ or ‘absence’ can switch within a single conversation, so be ready. At first, it’s natural to take it personally: ‘Why is he doing this?’ But sadly, your loved one is no longer in control.

Fourth, don’t try to reason with an Alzheimer’s patient when they’re ‘not there.’ It will just end up frustrating both of you. People with first-hand experience dealing with Alzheimer’s tell me that it’s better to simply go with the delusions rather than fight them, as long as no physical harm comes from it. Get into their world, embrace it, and don’t fight it. If they’re talking about something that doesn’t make sense, just say things like, ‘Wow, that sounds interesting,’ or ‘That sounds like fun.’ Don’t try to convince them they’re wrong; it will do nothing more than intensify your heartbreak.

Lastly, give yourself permission to feel sad. It IS sad! But life must go on. You have to be strong for their sake, so it’s important that you manage your own stress first and foremost. Delegate to others, and plan your time. And for goodness sake don’t give up everything you enjoy just because your loved one is ill. There is absolutely no virtue in that sort of ‘self-sacrifice.’ You can’t change what you can’t change, so you should work extra hard to take care of yourself as you mourn your ‘there, but not there’ loved one.

It’s a tragedy, but it’s also a life passage. Deal with it guiltlessly and take care of yourself. When the end does finally come, you will be strong enough to help your loved one make a dignified and graceful exit.