Once Mom got Alzheimer’s, my father let very few people into his house: only me, my sister, our families, and one of his brothers. When neighbors dropped by, instead of inviting them inside, he went outside to talk to them…and always shut the door. If friends or family phoned to find out when they could come for a visit, he put them off with lists of non-existent doctors’ appointments. He kept the windows on the front of the house covered; if someone tried to visit without calling first, he simply didn’t answer the door.
Dad thought he was protecting himself, and me. He called it privacy. I called it isolation.
Surely not every caregiver is as extreme as my father. Still, it’s important to realize that Alzheimer’s isolates its victims and those who care for them. While those with Alzheimer’s gradually lose awareness of being isolated from the life they once lived, caregivers can see and feel their own lives disappearing.
The isolation caregivers experience has two faces. The public face leads some to make a conscious decision to keep others from knowing the reality of living with Alzheimer’s. Why?
Embarrassment is part of the reason. Caregivers are acutely aware of what visitors would be walking into. People with Alzheimer’s eventually care nothing about personal hygiene. Their former selves have been lost to extreme confusion, unpredictable moods, frequent anger, harsh language. And although caregivers spend their minutes and hours and days trying to maintain a clean and pleasant environment for their loved ones, they know walking into a home where Alzheimer’s lives can be difficult.
The other face of caregiver isolation is more private. The environment where a caregiver spends most of her time can be stifling. Caregivers’ lives can be reduced to the basics: simply getting themselves and those they care for from one day to the next. Alzheimer’s dominates not just activities, but thoughts, plans, even dreams.
The way out of that airless room? It’s letting people in. Let people in. Let them see and hear what you face each day. They may have stopped asking “How is your mom?” because they know Alzheimer’s doesn’t get better, only worse. But let them ask how YOU are. Let them SEE how you are. Some who come in will leave as quickly as possible. But others will stay for a while. And later they’ll come back again. And again.
Their presence will bring you oxygen. The fresh air of new perspectives. Ideas you might not have thought of. New faces—faces that might replace yours occasionally, so you can stretch your arms for a while and wrap them around the life you feared you’d left behind.
Some people have probably already offered their company—neighbors and friends and other family members. Even if they feel unprepared to assist with caregiving, you can assure them that their company is the help you need.
And here’s an idea: you can find even more oxygen if you ask for it. You are not serving your loved one by suffering in silence. Asking for what you need, however, improves your mental, emotional, and physical health. And that makes you a better caregiver.
We caregivers may feel obligated to spare others the burdens Alzheimer’s brings. Many of us believe we should be able to do it all; asking for help may seem like a sign of weakness. I speak with respect and gentleness, but I say it plainly because it’s so important, for the one you care for, but especially for you:
We should be able to do it alone? Asking for help is a sign of weakness? That’s not true. It’s pride.
For he will deliver the needy who cry out, the afflicted who have no one to help. (Ps. 72:12 NIV)
We thank You, Lord, that because we are made in your likeness, we care for each other. You made us to help each other, to share burdens as well as blessings. Keep us aware, please, that we are never alone.