After the caregiving ends


When your loved one with Alzheimer’s and/or dementia goes into the nursing home and you are no longer providing hands-on care, your life is not going to immediately go back to normal. It may not go back to normal for a long time. It will never be the same even if you feel normal again.

You were caring for a parent, spouse, sibling who could not care for him or herself for a long time. You fed them, gave them medications (that they often didn’t want) took them to the doctor, bathed them, dressed them, answered the same questions hundreds of times, listened to the same recitations of disjointed, false memories hundreds of times, found their “stolen” belongings day after day, and tried to find some way to keep them content.

Now they’re in the nursing home where they’ve needed to be for so long and you have your life back…but it doesn’t feel like your life. You’re worried about how your loved one is adjusting to the nursing home and if they’re getting the same level of care you used to provide. You’re going to visit them and finding them happy, or depressed, or wanting to go home. You’ve forgotten how to have a family meal, or even a meal alone in front of the TV. No one is calling you constantly for help. You can close the bathroom door. You can sleep soundly without listening for coughing or moans or footsteps. But, you can’t do any of those things.

Eating without having to stop and cut up someone else’s meat feels abnormal. Eating what you want to eat instead of what they can eat seems wrong. You try to watch your TV shows again and expect someone to complain and make you change the channel. You try to read or write or garden and find yourself sitting and staring at nothing because you haven’t been able to do those things for so long that you’ve lost your passion or motivation.

You wake up absolutely convinced that you heard them calling you from the room across the hallway.

You have caregiver burnout. You may even have a form of PTSD, depending on the severity of your loved one’s illness and how long you were the caregiver. You can google caregiver burnout and caregiver PTSD and learn more about the conditions, and you can find support groups. Facebook is a good place to look for support groups. And then there’s always the library where you can check out a book or maybe even find a real-life support group.

You should, if you feel bad for a long time, or depressed, or suffer from insomnia or anxiety, go to the doctor. You may need medication until your emotions stabilize. You may need therapy if you can’t shake the feelings of depression or guilt. Many caregivers feel guilty because their loved one ended up in a nursing home. You can’t fix Alzheimer’s and dementia and other illnesses that accompany old age. You may have thought that you could, going in, but you didn’t fail because the person you were caring for ended up in a nursing facility. You didn’t fail because you couldn’t keep going on 24/7 with no real sleep and no life outside of meds and meals and baths. The diseases progressed beyond your ability to manage. Your loved one is in the care of professionals. They may be frightened or confused or angry but aren’t you, too?

Your life changed. You may have moved or quit working to do this thing, to take care of someone very ill. You may have neglected other family, and friends. You may have lost romantic relationships.

It’s time to rebuild you.

It’s not selfish. If you spent months or years caring for a loved one with Alzheimer’s and dementia, you’re not selfish. Now you have to orient yourself again. You visit and you leave and you go home and you try to get back into your favorite show and you eat whatever you want whenever you want and you stay up late and sleep late and sometimes you stay in the bed for a week until you’re not tired anymore and you eat crackers and cheese and tomato soup until you get your appetite back. You make friends with your friends again. You spend the whole afternoon on the couch reading with no interruptions. You get plastered one night because there is no one across the hallway who might need you.

But if you can’t start feeling better after a few weeks, if you can’t eat normally, if you sleep too much or not enough, if you know you’re drinking too much, if you can’t relate to people, if you become a recluse, it’s time to seek care for yourself.


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