Last week, I posted the first half of Lisa Cooke’s blog, “Ways to Help a Caregiver.” For those who are coming here first, Lisa polled her LBD support group for ideas about how to help and shared their responses in her blog, Lewy Warriors. In that first half, she suggested some nice things to say, and some things to do that didn’t include taking responsibility for the loved one, such as helping with chores, bringing a meal, and visiting. This is the final half of that wonderful blog.
Include the caregiver and their LO in social activities. As stated before, caregiving is very lonely. Day after day goes by with routines that never let up. We can’t just decide one day that we’re not going feed or dress our LO. We can’t take a break from taking them to the bathroom. Providing some social interaction can give a much needed change.
When my father reached the point with Parkinson’s that he could no longer be left alone, three of his sisters came to my parent’s house every Wednesday evening so my mother could go to choir practice. Mom would usually bake a cake or pie before they came, and the sisters had a couple of hours to visit with my father and each other. They loved the time reminiscing, and my mom’s desserts were an added bonus (she’s a good cook) and it gave my mother a couple of hours each week where she didn’t have to worry about him. It was a win-win for everyone.
Now that my husband is no longer capable of going out to dinner, his brother, sister, and their spouses come to our home occasionally for pot-luck or pizza. My husband gets to stay in his favorite recliner and still visit with his family. It’s an easy way to enjoy each other without moving him from his comfort zone.
If the LO is still able to leave the house, plan a small gathering with friends. Talk to the caregiver to find out if there are special needs (Example: foods that are eaten easily, a comfortable place to sit, and easy access.) Keep in mind that those with dementia tend to get anxious easily. No loud music, large crowds or frolicking children unless you know those things will not stress the patient.
For the brave ones. The number one request by far dealt with giving the caregiver a break, even for a few hours. One of the moderators of our support group said, “I wish someone would call and say, ‘I’ll be over on Sunday from 1-3 to sit with your wife, if you have anything you’d like to do.’” He said he needed the friend to be specific with when and how long, and to give him an opportunity to plan. He also mentioned how much he would appreciate if someone would call and offer to help with the next doctor’s appointment. Transporting our LOs is tough to do alone.
“If someone could just come one night and take care of night issues so I can get some sleep, that would be great.” Even one night in a month can make a huge difference to an exhausted caregiver. And knowing the primary caregiver is asleep in the other room should relieve some of the fear of being in the situation of dealing with nighttime issues.
One caregiver had a friend that would come to her house one Sunday a month to fix breakfast and visit with her husband so she could go to church. Another caregiver said her husband had a friend that takes her husband to get a haircut and out to lunch once a month. For those caregivers, those days are a treasure they can count on.
For those who live out of town. What if the caregiving situation is for your loved one and you live out of town? Maybe, you have a sibling or close family member taking care of your parent and you don’t know how to help. There are things you can do long-distance that can make a big difference.
One caregiver said her brothers and sisters got together and hired an aide so she could get a much needed vacation after 7 years of having no break in caregiving duties for their parents. “It was less than $100 for each of them and I needed that vacation desperately.”
Sending text messages to both the LO and the caregiver can brighten each of their days. Phone calls to ask how they’re doing and offer moral support are always helpful. Even flowers sent to let the caregiver know you appreciate his duties lets him know he’s not forgotten.
In summary
•Helping out doesn’t have to mean providing physical care for the patient. Offering to do chores or bring dinner is always welcomed.
•Phone calls, hiring an aide for a couple of days, or even sending flowers or cards are thoughtful ways to help.
•Please visit, but call first and ask for a specific time that would work well.
•Offer to sit for an hour or two so the caregiver can get out.
•If you have several friends or family members that are close to the caregiver, work as a team to take turns bringing meals, doing chores, or sitting with their LO. Things like that are often easier in a group and letting the caregiver know there’s a team supporting her is priceless.
I hope you enjoy Lisa’s blogs as much as Jim and I do. Expect to see her here about once a month because she’s agreed to trade blogs.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
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