Caregiver Spotlight Q&A on Spousal Caregivers
Caregiver Spotlight Q&A on Spousal Caregivers
As part of our caregiver spotlight series, Caregiving.com spoke with former caregiver and secretary of the Well Spouse Association® Board of Directors Terri Corcoran about the spousal caregiving experience.
What are some of the unique challenges spousal caregivers are facing right now?
Spousal caregivers have the unique challenge of their basic relationships being adversely affected by the illness of one partner. The spousal relationship, unlike a child/parent relationship, is based on an equal sharing of their life together. The partners have freely chosen to be united to each other with certain hopes and dreams for their life together; and then an illness comes along and shatters all those hopes and dreams, and life becomes something completely different and unforeseen.
If by saying “right now,” you mean the pandemic, that certainly makes everything much, much worse. Mostly everyone is facing challenges with finances, employment, getting basic supplies, and being isolated from friends and family. For a marriage impacted by an illness, it could be even more difficult to get medical care or home health aides. If an ill spouse is in the hospital or a nursing home, the well spouse cannot even visit. The pandemic has magnified an already very challenging situation into something much more difficult in every way. It’s hard enough for everyone right now to take care of their basic needs even if they are healthy; but when there is a serious illness added to the mix, the pandemic adds many intensely difficult ramifications. Spousal caregiving is lonely, and the pandemic has made it much lonelier.
How does caregiving affect the dynamic between spouses and partners?
It completely throws off the balance of the spousal relationship, which is traditionally thought of as a mutual relationship, with each partner contributing to the practical details of their life together and supporting each other emotionally. When one partner becomes ill and the other becomes the caregiver—depending on the severity of the illness—the caregiving partner must take on an unequal share of what used to be shared chores, like finances, housekeeping and home repair, shopping and cooking, childcare (if there are young children), etc., as well as managing the healthcare of the ill partner if the ill partner is unable to do this for him/herself.
This unbalance will likely cause emotional strain for both partners: the caregiver partner can feel overburdened, resentful, exhausted, frustrated, and very alone (especially when the ill partner has a dementia illness which makes communication difficult or impossible); and the ill partner may be frustrated by the illness and the disabilities it inflicts, becoming angry and uncooperative. Then, both or either partner may feel guilt because they are angry or resentful.
What parts of the spousal caregiver experience do you wish more people understood/talked about?
The emotional impact of having a partner physically and/or mentally reduced by an illness; the sadness of watching the loss of your life together as you had imagined it. Friends and extended family may see the physical illness, but they do not see--or do not address--the emotional toll it takes on the caregiving partner.
Also, more people should be honest about the feelings of anger and frustration that are normal in such a situation. Many spousal caregivers I have spoken with over the years are so relieved to find that feeling angry or resentful is something shared by many spousal caregivers and that they don’t need to feel guilty about it.
What ways can we offer our support to spousal caregivers?
There are so many ways to help: offer to bring food, help with household chores--anything that might ease the load of the caregiver. You can offer to sit with the ill spouse so the well spouse can get out if the ill spouse cannot be left alone. What I wanted more than anything, as a spousal caregiver for 16 years, was for people to visit my husband and me, to call us on the phone to see how we were doing, to allow me to vent about all my stress, and to bring food because I hated to cook.
Over the course of a long, chronic illness, though, friends and extended family seem to drop away and become disinterested because it may be too painful for them to watch the decline of their friend or family member, and they don’t know how to handle the situation. They could just ask, “What can I do for you?” or make a phone call to ask, “How are you doing?”, and let the caregiver talk.
What inspired you to get involved with the Well Spouse Association?
When my husband got ill with FXTAS (a genetic neurodegenerative condition) at the start of our marriage, I was completely overwhelmed in every way as he began deteriorating physically and cognitively. I wanted so much to find other spouses in a similar situation. In 2005, someone told me about the Well Spouse® Association (WSA). They had an online discussion forum as well as a local, face-to-face support group in my area. I immediately joined the group, went to my first meeting, and felt so relieved to find other people grappling with this very difficult spousal/illness situation. Our spouses had a varying array of chronic, long-term illnesses and disabilities, but we all had so much in common as well spouse caregivers.
Why do caregivers need a resource like the Well Spouse Association?
Caregiving is usually a very lonely activity: you not only lose much of your emotional relationship with your ill spouse, but friends and extended family often fade out of your life because you can no longer be who you were to them before caregiving took over your life. At WSA, either online or in face-to-face telephone or zoom support groups, we can be totally honest about our feelings, and we are understood by each other as we all are walking similar journeys. We also share practical advice on medical equipment or therapies and hiring home health aides. We share what we do to sustain our own physical and mental health, and we try to encourage each other to find time to pursue whatever nourishes us--whether it be hiking, reading, faith, music, etc. We can also laugh together about how ridiculous life can get as a well spouse.
My Well Spouse® friends became my best friends, and remain my best friends, even four years after the death of my husband. WSA also supports “former well spouses,” those of us who become widowed after years of arduous caregiving.
If you could wave a magic wand, what kind of information and support would materialize for spousal caregivers?
How to most effectively deal with your partner’s illness (in my case, my husband’s condition was newly discovered by medical science, and doctors basically did not know what to do and could not offer me much guidance, so I was left to do my own research and cope the best that I could); financial aide to caregivers when one or both partners can no longer work because of the illness; health insurance for those who cannot afford it; friends and family to call, visit, bring food; marriage counseling to help a couple dealing with a life-changing illness.
What words of encouragement do you have for caregivers at this time?
Be good to yourselves. Just the fact that you are being a caregiver everyday is HUGE. You won’t be perfect; none of us are. Do your best, but realize you are only human and fallible. Know that what you are doing is very difficult, but very loving and important, and take whatever time you can each day to do things that relax you or give you the mental stimulation you need.
Read 10 Tips for Spousal Family Caregivers for suggestions on small, daily rituals that can positively impact the relationship between spousal caregivers and their partners.
Terri Corcoran is secretary of the Well Spouse® Association Board of Directors, co-editor of its newsletter, Mainstay, and co-leader of the Northern Virginia Well Spouse® Support Group. She was a full-time caregiver for her husband for almost 16 years until his peaceful death at home in 2016. She has written many articles and spoken on podcasts and radio shows about being a spousal caregiver.
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