Dad’s early onset dementia has made it weird at work.

My dad is 57 and was just diagnosed with early onset dementia. He’s clearly not able to live on his own, and my wife and I are making arrangements to move him to a group home where he’ll be safe. We are already working on guardianship and power of attorney stuff so that we can sell his house to pay for his care, sell his car, etc.

The only people at work I’ve told so far are the HR manager, mostly to find out whether, as Dad’s guardian, my benefits will cover him as a dependent. Sooner or later, though, I’m going to have to tell my boss, and I don’t know what to say. I’m afraid that as Dad takes up more and more time, my boss will assume I’m not available to work late on projects, I can’t travel, and that I might get passed over for promotions because my mind is more on Dad than it is on work.

Dad might live another 40 years, and I hate to think of this horrible disease-–which I admit he didn’t bring on himself—destroying my career and preventing me from living my own life.

What’s worse is that I feel selfish and guilty about feeling that way, and I can’t take off even MORE time from work to talk this all out regularly with a therapist.

I feel trapped. Not really sure there’s a question here, but there you have it.

Practical steps you can take

First of all, let me express my sympathy for your situation. No one should have to go through the torment of watching their parents’ mental decline, especially while they are still in the prime of life. Second, I want to let you know that you’re not a bad person for wanting things to be different for you. It’s not selfish to want to live your own life, and you should not feel guilty. I know you do, though, and I hope that in time, you will stop torturing yourself for it.

Regarding your work situation, I have several thoughts. First, you mentioned that your company has an HR manager, which means it probably isn’t just you and your spouse. If your company employs 50 or more people and you’ve been working there for at least a year with 1250 hours of service during that year, or if you work for a state, federal, or local public agency or school, you’re probably eligible under the Family and Medical Leave Act (FMLA) to take family and medical leave.

FMLA covers not just maternity leave (which most people are aware of), but also your own serious health conditions (if they render you unable to work), absences due to military service, AND the care for a spouse or parent with serious health conditions.

That would include your dad.

You are doing the right thing by reaching out to your HR manager. Benefits plans are there to be used. I suggest that as soon as possible, you find out from the HR manager what the process is for applying for family and medical leave.

A lot of people are concerned that if they take FMLA time, their jobs won’t be there for them when they get back, or that their supervisors will give them bad evaluations, alter work assignments to exclude them from promotions, or worse. FMLA expressly prohibits that, and if you feel that’s actually likely to happen, I suggest you contact an attorney familiar with FMLA.

The other possibility is that you FEAR your boss will do something like that and (s)he won’t. Which leads me to my second thought.

You mentioned your busy schedule. I think that despite that, you SHOULD reach out to a mental health professional to see what options might be available for them to help you work through the rough spots. You mentioned you don’t really have time to see one, but what about evenings, weekends, or Zoom consultations? Caring for someone in your dad’s condition can take a huge mental toll, and given your concerns about being seen at work as “less than fully there”, I think talking to someone will help you find ways of being more fully present at work.

Since you’re already talking to your HR manager, ask them what sort of counseling benefits might be covered. If you’re uncomfortable talking with your HR manager about mental health benefits (many people are!), then go back and read the fine print from your benefits package. If the company you work at is the kind of place where things you tell the HR manager go straight through to your boss or someone else who has no business knowing it, I think you might want to update your resumé, because that’s a pretty toxic workplace, and even if you bring in a lawyer to fight for the benefits you were promised, the bloom is off the rose.

Now, about you…

You mentioned your concern about the fact that Dad might live another 40 years in his condition, robbing you (my words) of the chance to live your own life.

There are some facts worth mentioning here. The first is that depending on the type of dementia your dad has, life expectancy after diagnosis is relatively short. The time you have together can be as short as 3 years or as long as 10, but seldom more than that. I don’t know whether that’s a shock or a relief to you, but it may help you with planning what the next several years of your role as a caregiver will look like. Sometimes just knowing a rough idea of how long you have left can help focus your attention on what matters most.

Second, depending on your dad’s assets, finding the right kind of care can take a lot of the load off your back. Dementia care ranges from in-home 24×7 nurse assistance (the most expensive), to less expensive full-service nursing homes, more relaxed, residential-feeling places that feel less clinical and more like hospice, which can sometimes be half the cost of more expensive facilities, with nearly equal levels of care. Many are in neighborhoods (often a repurposed older house) that feel more like home. If Dad lives longer than expected, adult day care may be an option to consider while you’re at work. There are also elder-sitting services as well as hire-a-friend services that can visit Dad at the facility or your home every so often and check in on him. When my own mother had declined to the point where she didn’t recognize her own family or friends, we hired a lady in her 70s to pay Mamma visits and talk about the weather. Mamma was delighted and it gave me some relief from having to constantly check in on her.

It might be possible to allocate dad’s assets to pay for a level of care and supervision that allows you to get on with your work life without feeling like you dumped Dad in a frightening hospital-like environment that drains his assets so quickly they won’t outlive him.

Your needs matter. You have a right to get on with your life. It’s also important that it not be one of misery and guilt. So take the time to forgive yourself for what you’re not guilty of, and be kind to yourself.