Dear Carol: My mom, age 79, has had steadily declining health for several years. Arthritis is a genetic problem in my family, so pain is an issue. Besides that, she has severe asthma, so her lungs show a lot of deterioration. The family has handled all of this but now her thinking is getting foggy. She’s resisted moving to assisted living even though we all know that this would probably be best. I work full-time, so even though I live in her community, I can’t be with her all the time. I also have teenage kids so even checking on Mom every day is getting to be too much. I know that I’m just getting started with this parent care work but I’m already feeling like I can hardly keep going with it. What’s my next step? My siblings live far away, so even though they are willing to be involved, what they can do is minimal. –FB
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Dear FB: You truly have your hands full. Preventing burnout is the right approach because like so many things, backing off once you are completely immersed in them presents even more problems. I hope that you can put a plan in place that will work for the long haul.
Here are some strategies that might help:
- Set boundaries: I just jumped in and handled every family crisis but didn’t have a clue how to back off. With the wisdom of hindsight, I’ve since advised caregivers to try to look at the big picture early on which generally means setting boundaries. Decide what you can help with and what you can’t. Then lay it out for your mom. Because you already have the responsibilities that include your marriage, children, and a job, your mom needs to know your limits. Remember this: you do have limits.
- Discuss options: One of those options is NOT that you will be her only caregiver. You can say, “I will help in all the ways that I can, Mom, but I can’t take care of everything that you will need all by myself.” Then, present her with choices. In her case, gently encourage the idea of assisted living. If she continues to fight that idea, then tell her that the only alternative is to hire an in-home care agency. This type of care can work out better in some communities than others but let her know the plan and stay with it. Just presenting her with choices and letting her live with them for a little bit might help, so don’t order her around. Allow her to think what you’ve said because the idea that change is needed will take time to sink in. But won’t buckle and say that you’ll take it all on.
- Research available help: You can being by calling your local Area Agency on Aging. Another excellent resource is the Eldercare Locator online.
- Follow through by making calls: You may need to ask one or more siblings to come and help you make these changes for your mom. Be firm with them, too, that you can’t do this alone.
- Find support groups: You might want to look for a dementia support group. One wonderful option in many communities is Daughterhood.org. They don’t have groups everywhere, but they are expanding. In addition, or just if this option is preferable, go online for support. The National Alliance for Caregiving is a terrific place to start. Agingcare.com is another good online option.
- Set priorities: While keeping flexible enough to handle emergencies, try to stay with them as much as you can.
Continue to tell your mom, your siblings, and anyone else in your life that you must set up a plan now because you cannot handle your mom’s care alone. Be flexible but firm.
Guilt will enter in, but that is unearned guilt. Watch this space to learn more about this hazard of caregiving because you will deal with it. Sadly, that’s a given. Take care of yourself now and you’ll be better able to take care of everyone else.
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