Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really? In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help. For one thing, I didn’t want anyone to think I couldn’t handle it. He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others. In fact, when we had visitors he would stage an appearance. His clothing had to be reminiscent of the clothes he wore before his disability. He only ate what he could manage himself. He would slip in and out of the gathering discretely so people would not notice him needing special attention. He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us! Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things. Trust me, I’m not offended! Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated. So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1. Offer to do something specific. Think about what is a task that takes a long time or may require special skills. For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower. I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things. I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time. It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend. Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime. Also, some are intimidated by his condition. Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way. I remind people that he’s not fragile. I always take care of his medical needs before I leave. Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items. He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1. Treat this as a job. If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2. Realize you are there to help out; so help. I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3. Don’t tell the caregiver, “You just have to take care of yourself better. You need to start exercising and getting more sleep.” When someone says that to me, I want to say, “Don’t you think I would do that if I could? There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it. Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me. It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone. Thank the Lord above for the angels He sends to help. I know I couldn’t have made it without them.
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I so understand how this all goes. I am a very young caregiver (age 33) and people are often saying you need to make time for you and your new husband. I always tell others give me 4 more hours in my day and maybe i could. I often call those that have offered there help and get I can help in a few days never on the day that I could really use the help.