Q&A with a Caregiver
This month we are trying something different for our feature; a Q&A style interview. This first round will be with a caregiver whom I have gotten to know quite well having been her hairdresser for many years. She’s incredibly wise, thoughtful, and vulnerable in sharing about her caregiving role and I believe she has a lot of insight for others who may be embarking on this journey. She was actually the inspiration for our Art of Listening service. After speaking with her and several other clients in the salon I realized how imperative it is for caregivers to have a space to share openly and honestly about their experiences.
Give us a little backstory to your situation. Who are you caring for, for how long, and what is your loved one's prognosis?
I am caring for my mother. She has chronic pulmonary disease as well as Alzheimer's and is on oxygen full-time. She had been living independently in her home since my father died several years ago until a year and a half ago when she fell and broke her hip. She had surgery followed by many complications. After about ten days in the hospital, including several days in ICU we were told she only had a few weeks to live and she was sent home on hospice care. My sister and I became her full time caretakers and had a decision to make about how we would handle her daily care. My sister lived two blocks away from her and I was living In Fort Worth which is about an hour and a half away. Our primary goal was that she would be able to live in her home and be surrounded by her things so my husband and I decided to temporarily live with her in her home which we had the ability to do because he was working remotely due to the pandemic. We wanted her to thrive and not just survive. With a lot of physical therapy she kept improving and is still with us a year and a half later.
Once we got past the initial crisis we were looking at options for her long term care and I struggled with what to do and how it would all work. My husband, sister, and I considered several options such as moving her to our home in Fort Worth or assisted living but we felt most at peace with the solution to keep her in her home while we continued to live with her full time. When I began to let go of trying to figure out what the long term solution would be and started taking it one day at a time it got easier. We trusted that God would let us know when it was time to do something different and until then we stuck with our plan. We had a couple of major setbacks and almost lost her a multiple times but she kept pulling through and really wanted to live.
One thing you and I have discussed at length and you have articulated so well is managing expectations. That can be such a tough mental battle especially when the situation is always changing. What have you learned along the way that you could share with us?
A very godly lady i know called me one day soon after it became clear we would be living with my mother for an extended period and she said, “April, you thought you were going to be running a sprint: you're now in a marathon and you need to approach it that way.” That has been very comforting to me and I like the imagery of that. The ups and downs really are a roller coaster. One day you're crying your heart out because you've just said your goodbyes to your mother and the next day she's much better. I remember thinking “how many times are we going to go through this?” About six weeks into being her full-time caregiver, I started to feel very upset with myself because I expected that I would handle things better since I have a strong faith in God. This was my lowest point, and I remember texting my pastor one evening and just said, “I’m struggling” - which was so hard to admit. I wanted to have everything under control. And it was Good Friday, so I hated to bother him and ask for help, but he called me right back and said “It's okay to struggle with this, you're just human. It’s Good Friday and even Jesus struggled with his burden and shed tears. Why would we not struggle even if we have faith.” This was a huge relief and led to me letting go of thinking I was in control. That was a big turning point that helped me to reset my expectations. I stopped trying to anticipate what would happen next and began to live in the moment and to cherish the good moments more.
Another common topic of ours is around difficult emotions such as guilt when caring for a loved one. Every situation is unique but guilt seems to be a commonality in most cases. It’s almost as if we are hardwired to find ourselves lacking when it comes to the caregiver role even though it can be extremely taxing without the added burden of guilt. Why do you think this specific emotion is so prevalent among caregivers?
It is so common and we tend to think we are never doing enough even though we’re trying so hard to be a good caregiver. Worrying about making a mistake and feeling responsible for outcomes that are out of your control. And, this is hard to articulate but I think people in this position will understand what I mean, that you wish your life will get back to normal but you also know what that means. That my person will no longer be with me and so I feel guilty for wishing for my normal life. I think this is really common.
Who supports and fortifies you along the way? What are some ways you have found to provide self-care and more balance in your life on this long journey?
My husband totally supports me through this journey. He lives and works out of my mother's guest bedroom and has really uprooted his life. He helps me emotionally, when I want to give up he says the most encouraging thing at the right time. He never makes me feel torn between him and her. I uprooted my life to care for my mother and he uprooted his life to care for me. He's put what I'm going through ahead of his own convenience. I'm also really blessed that my sister and I support each other and are on the same page when it comes to our parent’s care. She's been right here on this journey with me. If I had brought my mother to my house I would have lost the ability to have her help which would have been overwhelming. Even though we have different experiences and perspectives we have the same values and want the best for our mother and also sibling dynamics can be challenging. At first we were both trying to be at my mother's side all the time and that was okay for a few weeks but we quickly figured out we needed to work out a schedule so we both had some breaks and we weren't duplicating each other's efforts. My friends have been really great about checking in with me. One of them organized a card campaign and they have continued to check in with me via text, cards, and calls. I know that they haven't forgotten about me even though I'm not with them right now. It’s also been very helpful for me to be very intentional in the reverse about staying in contact with them and taking the focus off of my situation and being more outward focused on other people and ways I can give to them or pray for them. That way I'm not just on the receiving end but being intentional about still being a friend. That's been really helpful for me. Of course my faith in God is the foundation for everything for me and part of my journey has been learning to trust God more. That's been my biggest source of support through all of this. I carve out quiet time and read my Bible. I’ve stayed connected with my church and community even if its via zoom or watching the online service. I will do the things I can do remotely like a cooking class or book club that feed my soul and keep me connected with other people because I think caregivers can put all their other relationships on the back burner and become very isolated. I'm very intentional about not letting myself become isolated. Another thing that's very practical is we bought a treadmill so I have a way to exercise while I'm here and have that as a release that has been very healthy for my body and my mind.
You have already shared so much great advice. Is there anything you would like to reiterate or add for someone who is just beginning this chapter of life with a loved one, especially a parent?
Don't try to do it all yourself. Ask for help and be aware of available resources. I'm a huge advocate for hospice care and the resources they provide. That has been huge and also we were fortunate that we could hire caregivers to help us with my mother so we can have breaks. I know not everybody can do that but if you can I would advocate for hiring extra caregivers. Every now and then I do feel guilty thinking I should be with my mother rather than hiring somebody else to sit with her and I would say don't feel guilty about that as long as you know they're in good hands you don't have to be with them every single moment and every single day for them to get good care. It's under the umbrella of don't try to do it all yourself. The other thing is since we don't know how long of a journey this will be to not give up on living your life while you're caregiving and try not to look at it like you're just biding your time and waiting for life to be different. Try to make life as meaningful as possible while you're on the journey, and find moments of joy. It's hard. And it's hard to admit that it's hard. But if just one of these points can help someone else, it’s well worth sharing.