Walt Disney said, “The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.” The act and art of caregiving showcased this lesson. It is difficult to be a caregiver and also difficult to need a caregiver. For me, caregiving was challenging and heart-wrenching, but also the most meaningful, rewarding and loving work I ever did.
The bottom line is that caregiving can be daunting, overwhelming and isolating. Needing help is difficult for many caregivers. It seems a contradiction to ask for the care when you are the giver of it. As hard as it is to ask for help, for many people it is also hard to know how to offer support. I do believe that many people genuinely want to help. This is frequently expressed in statements such as, “let me know if I can do anything.” It is not that this is not sincere. Unfortunately, it is not always helpful. For one thing, asking a caregiver to reach out adds yet another burden. It also requires a caregiver to determine if a person is truly willing to help, and to what degree.
There are apps and web sites that enable the coordination of tasks. These are great to pursue. However, they also require effort to organize, particularly for those people uncomfortable with technology. As caregivers, we know what we would appreciate for ourselves and our carees but we seem reluctant to share these wonderful and often simple ideas with the people are able and willing to tackle the tasks. Maybe it is discomfort with asking for help, and it could also be a feeling of being overwhelmed and just wishing that people knew what to do without your telling them, because you already direct so much activity!
What I have done here is compile a list of suggestions, or wishes, shared by caregivers, including my own. Please share this post, or print out the information here and email, text or hand it to anyone who asks you to “let them know” what they can do. Share it with people you know who are caregivers or who know caregivers. Let them choose from the list. Highlight the things that really appeal to you and are appropriate to your situation. Clearly, some of the suggestions are contingent upon the circumstances of the caree and the extent of relationships. Modify or add to the list it as you see fit!
The most important thing that family, friends, neighbors, coworkers and others can do is to be present and not to make empty promises. It is better to show up than to stay away because of fear. We may be the caregivers, but others can, and often want to demonstrate the “care” in care-giving!
The majority of these suggestions did come from caregivers of people with ALS (pALS) but, they are easily adaptable to many situations.
**Please note: Some of these can be done on a regular basis. Also, be specific about what you can do. For example, let me know that you can do my dishes every Wednesday evening.
- Do errands like going to the grocery store or pharmacy. You can even text from a store to see what I need.
- Stop by with groceries or a meal.
- Bring lunch to my caree when I’m not home.
- Help with a household project, such as home maintenance, gardening or cutting the grass
- Walk the dog and give him/her some play and run time.
- Take or pick up my child(ren) from school/library/club/playdate.
- Do the laundry.
- Sweep the floor.
- Do the dishes.
- Provide transportation to/from doctors and clinic appointments.
- Organize bills and paperwork.
- Perform or help with the night-time routine and putting to bed.
- Bring my trash bins back from the curb.
- Bring mail from a curbside mailbox.
- Volunteer to make phone calls to help coordinate care.
- Visit with my caree, even if for a short time, so that I can shower, take a nap or just relax. Tell stories, share memories, laugh!
- Stay with my caree while I go for a walk, run an errand or do anything that will give me some peace.
- Feed my caree a meal to give me time to catch up on things, or just relax.
- Take my caree for a ride, to the movies, shopping. We need a break from each other!
- Make a meal, for my caree and/or for me. Just show up with it! You are invited to join us.
- Bring coffee or tea or any snack and join me for a break.
- Come for a chat. Even if my caree can no longer chat, he/she listens and will feel engaged, needed and valued.
- Flowers brighten our day. Laughter does, too!
- Spend time with my children- read and play games with them or take them out to the library or playground.
- Spend the day with my caree so I can clean, do long overdue projects, etc.
- Read aloud or play an audio book and stay to listen.
- Spend time with me, even if the conversations and times get interrupted with my caregiving responsibilities. You can even be a second set of hands if I get overwhelmed.
- Bring lunch, sit and enjoy the meal with me.
- Share your joys and stay connected through texts, emails and calls, even though I cannot always respond.
- If you go to a restaurant, bring something back for me.
- Stay over, so that I can have a brief getaway.
If you can:
- Pay for housekeeping services, for one time or even on a regular basis
- Spa services are a wonderful gift- manicures, pedicures, facials, or a whole spa day!
- Contribute money to hire caregivers for various periods of time
- Gift cards help us with a variety of items.
- New sheets and a comforter.
- Help us to start our Amazon wish list so that anyone interested can provide items that we need.
- Research and assist with securing equipment and grants for home.modifications.
- Be an advocate for caregivers and on behalf of any disease.
Walt Disney also said, “There is great comfort and inspiration in the feeling of close human relationships and its bearing on our mutual fortunes.” I am grateful to the group of caregivers that I have had the pleasure to get to know and who have offered support and contributed wonderful and thoughtful ideas that you see in this post. Share this list with people who say that they want to help. Ask them to share it, too, so that others who are or know caregivers get ideas for how to help. I found that kindness often came in most unexpected ways and times. Despite the circumstances that none of us wished for, I hope that this is a bit of pixie dust.