You made the choice to care for your elder loved one and to help them realize their goal of aging in place. Typically, that term simply means living out your older years at home, rather than in a senior living community. It’s also an arrangement that most Baby Boomers and seniors say they'd prefer. Usually, this option will mean some amount of in-home care, whether via an agency or a loved one.
As a family caregiver who has taken on this role, you’re committed to making sure your loved one’s needs are met. But chances are, it’s not quite what you expected and now you’re wondering if you made the right choice. First, let’s look at some unexpected encounters you may be facing and then, a few tips that may help.
1. “I feel so isolated.” Caregiving means being home -- a lot. It can feel like you’re cut off from regular life. Running errands and accompanying your loved one to doctor's appointments isn’t the same as making real connections.
And caregivers aren't the only ones whose world grows small. Aging in place can limit your loved one's choices for social activity, especially if they live alone. Additionally, he or she may struggle to make room in their home and life for a family member to care for them. Caregivers might not always remember their loved one’s need to maintain friendships, church and community connections. Illness, pain and growing care needs may cause your older loved one to feel as if all they do is take pills and go to the doctor. It may be difficult to show gratitude for the care they’re receiving, and also tough to speak up and let you know that they need other relationships in their life to feel fulfilled.
What to do? Make a commitment to seek new connections, both for yourself and your loved one. Check community resources. Start with your local senior center or aging organizations in your area and ask what is available. Consider adult day care, even if it’s just for one morning a week. Plan a couple of fun outings each month -- one for you and another that you can do together. And, consider a future in which your loved one receives the care they need within a community of other seniors. This could mean a continuing care retirement community (CCRC) or an assisted living community.
2. My family members said they’d help -- and they aren't! The brunt of caregiving usually falls squarely on the shoulders of one person — and you’re it! It’s frustrating and disappointing. But admit it, you might be a tad controlling. You know your loved one’s preferences and routines, and want it done right (your way). It may be time to allow others into your life and to encourage them to find their own style of care.
What to do? When someone offers help, get out of their way. Literally. Go to your room or better yet, out to lunch with a friend. They're not going to do it your way, and they don’t need to. Ask for what you need. Caregiving doesn’t come naturally for everyone, so if that's the case for this person, find other ways they could contribute. What about pitching in with home repairs or helping financially by funding additional home care aides a few hours a week?
3. We are not compatible. Living with a family member (again) can be a tough transition. The first few weeks can seem like a honeymoon period when everyone is on their best behavior. Over time, demands and expectations build and snowball into anger and frustration. All the old buttons get pushed, and what started out as a good idea now seems like a terrible one.
What to do? Give it time. You aren’t going to magically “fix” old issues, so accept that. You’re family, and families are by nature complex, but they’re also resilient. Create a routine you can live with—they won’t starve if they don’t eat breakfast until 9 or don’t shower every day. Make your room your sanctuary. Shut the door and don’t rush to meet every need — you simply can’t. Say no to ridiculous requests. Be feisty!
4. You’re scared you’re not doing it right. That’s how it feels most days. You’re afraid that if you mess up their meds or if you don’t get to them in time, something bad will happen. You yell. You’re given the silent treatment. What if somebody finds out? Secret confession: most caregivers feel this way much of the time. What often bothers caregivers most is a sense of helplessness. You can’t make the pain, confusion and loss go away.
What to do? It’s not all about being a good nurse. It’s okay if you’re messy, untrained, and lose your cool occasionally. But you’re family, and that matters more. Learn about your loved one’s disease, the meds, or how to handle difficult behaviors. You’re smart and you have a reason to learn all you can. Go online, join a support group, ask questions, take a class or buy a book. It won’t fix everything, but it'll give you a sense of empowerment.
5. You’re afraid of what comes next. What happens if you get sick or can’t do it anymore? Is a senior living community an option and if so, how will you ever get your loved one to agree to the change? What happens if they die? What if you don’t think you can handle them passing away at home? What if part of you wants this to be over? Will there be a sense of relief or just profound loss? These are just some of the tough questions caregivers grapple with day and night.
What to do? Try this: Go to a mirror, right now and say this: “You’re doing the best you can, and that’s all you can do.” Then go to bed. Take a shower or a walk. Meditate. Pray. Find a few words in a poem, spiritual or inspirational book that give you a sense of wholeness. Grab a notebook and write about all the things that scare, frustrate and overwhelm you. Then sit in the quiet.
Important points to remember:
Caregiver stress is real. Caregiver stress isn’t just about being sad or overwhelmed, it’s dangerous. Sleep deprivation can cause serious misjudgments in medication management or driving. You could miss critical care decisions of overlook a symptom because you’re bone-tired and don’t listen to your instincts.
When’s the last time you had a check-up or got your teeth cleaned? Are you self-medicating? Taking something to sleep and then something to wake up? Feeling anxious all the time, drinking or overeating to take the edge off? Stress leads to vices, which can compound and bankrupt your health and relationships.
You’re not just a caregiver, you’re a care manager. Caregiving is a patchwork job at best. You get a decent system going—a good routine, meds that seem to work, a doctor you trust, good home care aide -- and that lasts for a few months, tops. Care needs change constantly and no matter how thorough you are, things change. Most days you have more to juggle than you can manage.
There are some real downsides to caring for a loved one at home, but there are a lot of surprising, sweet, hilarious moments, too. While there aren't any quick fixes or easy solutions, you can find a wealth of tips and resources online and in your community that can help.