10 Quotes from Caregivers: "What I need is..."
Chances are good you know someone (even if they are a couple of degrees of separation from you) who is serving in at least a half-time caregiver role for a loved one who is living with Dementia or another chronic condition. Caregivers are often really great at anticipating the needs of others, refusing support, and are usually good at compartmentalizing emotions so that they can juggle a multitude of demands, needs, and expectations efficiently. A lot of times caregivers are women, but this job certainly falls on men too. According to the Family Caregiver Alliance, 65% of US caregivers are women and are on average 69 years old. Way to go ladies!!! Caregivers often times fall into the "Sandwich Generation," caregiving for older loved ones while raising children, working full-time, and serving as the point person for their household. When we talk about caregiving for a loved one with Dementia or another chronic condition, we often make some assumptions about how difficult that role must be, but rarely delve into the nitty gritty in order to truly empathize with the scope of the responsibilities and the toll it takes on the people providing this free labor.
Yes, I know, it sounds callous and unfeeling to put into financial terms the price of offering care to someone we love, but let's be real, there is an entire unpaid workforce that is operating behind the scenes to ensure a growing population is getting high quality, around-the-clock care. This workforce is essential to our society and drastically reduces the cost to our economy by ensuring optimal level care is being provided to people who are unable to care for themselves. Our national economy rests on the backs of these free laborers ability to reduce emergency transportation requests, lower emergency room visits, and help to keep care receivers from incurring avoidable healthcare related debt. I'm just going to leave this here (from the Family Caregiver Alliance website www.caregiver.org/caregiver-statistics-demographics) :
"At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year, and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion)."
So what happens to the caregiver who is constantly making these emotional, mental, and spiritual deposits without some investments being made in return to their psychological bank account? Well more and more research is showing us that these folks will become less healthy both, physically and emotionally, contributing to a vicious cycle (Shulz & Martire, 2004). Self-care is at the heart of preventing the demise of caregivers, but it's often difficult to set these boundaries, when so many people depend on them. This is where the rest of us come in and don't worry, it doesn't take much as you'll see from these quotes taken from 10 active caregivers responding to the prompt, "What I need is..."
1. "To be acknowledged for what I do by the members of my household and my family. It's hard to feel like I'm not giving 100% to everyone and I often judge myself harshly for not being able to provide in the way I would like to for the people I care about."
2. "To be asked out for a coffee or a nice meal with zero expectations of me. I think people avoid asking me to do things because they hear and see how busy I am. Sometimes I just want to sit and enjoy a nice meal that I don't have to think about, plan for, or prepare."
3. "For people to not offer unsolicited advice. This is my full-time responsibility and I am doing the best I can with what I've got. If I ask for suggestions, then I sincerely want them, otherwise, it just feels like judgement and I am already pretty good at judging myself on my own."
4. "For people to offer to go visit my [loved one] so that I can have an hour or two to get other things done or just sit and stare at the wall or play spider solitaire if I want!"
5. "For people to allow me to feel resentful and bitter and to encourage me to do so when I need to. I love my [parent], and there are certainly more days of feeling compassion, love, and concern, but sometimes I feel bad for myself and it's nice to be around people who don't want to try and change that for me."
6. "To not be avoided. It can be a lonely island because people think you're too busy for them and that your problems are bigger than their ability to help. I'm still me-- I need friendship and passion and adventure too."
7. "For people to offer specific help. Sometimes I get so stuck in my routines and thinking I can do it all myself, I forget about dinner or stare at the mountain of laundry in front of me like it's Mount Everest."
8. "To know that I'm probably not going to ask for help on a regular basis. For one thing, I've got too much going on to keep up with reminding people of what needs to get done. My neighbor offered to start taking my garbage to the street every week and that has meant the world to me!"
9. "A hug. A lot of times I find myself feeling irritable and annoyed because there are so many things outside of my control. This, understandably, can make people feel like I don't want them near me, but inside I'm thinking, 'I just need to be touched.'"
10."Follow through." When someone passively offers help or goes even further to say that they will do something specific for me or my [loved one] and they don't follow through it can be really crushing. Because my schedule is so packed, I rely on the "follow-through" and it can throw a total wrench in my schedule to have to arrange for back-up... which is usually me."
Please share this post with anyone who might benefit and feel free to leave comments below. Want to join our free caregiver support group? It's held every third Thursday of the month at Arbor Terrace in Decatur (425 Winn Way, Decatur, GA 30030). As always, you are welcome to contact me directly with any comments, feedback, or concern.
Family Caregiver Alliance, 2016, "Caregiver Statistics: Demographics," In section, "Economic Value". Retrieved from https://www.caregiver.org/caregiver-statistics-demographics.
Richard Schulz, Lynn M. Martire, Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies, The American Journal of Geriatric Psychiatry, Volume 12, Issue 3, 2004, Pages 240-249, ISSN 1064-7481, https://doi.org/10.1097/00019442-200405000-00002.