12 Tips to Help Spousal Caregivers Through Hard Times
While family members providing care for loved ones share many issues, there’s a different emotional dynamic for spousal caregivers than adult children caring for a parent. Betsy E. Wurzel, spousal caregiver for her husband Matt Sloan, can attest to this. Matt was diagnosed with early-onset Alzheimer’s disease (EOAD), at age 56.
Spousal illness changes plans for future
I was aware of Betsy’s background and asked her about how different spousal caregiving is from caring for a parent, and what this means for their future:
“What it means to me for Matt to have Alzheimer's and need my care is, it is the most heartbreaking journey to watch your spouse deteriorate and I'm helpless to stop it! I had a parent with Alzheimer's. Caring for a spouse is much different. No retirement years for Matt and me!”
Men and women both represented as caregivers
According the Family Caregiver Alliance, both sexes provide equal amounts of care, at least among people 75 years old and older. The National Institutes of Health (NIH) says that younger caregivers seem to weigh more heavily toward women. Man, woman, young, or older, spousal caregivers still face struggles unique to their situations. You must practice self-care in whatever manner you can arrange it. The following slides take you through some tips that may help you take better care of yourself.
Personal space may be harder to find with a spouse
Giving one another personal space is important to many marriages. This doesn’t change when one spouse has health issues that must be addressed by the well spouse. Self-care for caregivers must incorporate some alone time for the caregiver and a chance to do something that he or she wants to do — alone. This rule applies to all caregivers but may be hardest for spousal caregivers.
Teamwork: You and your spouse are still partners
The well spouse needs to be careful not to demean or infantilize the ill spouse while providing care. The mutual respect that keeps marriages healthy must stay intact. One way to do this is to remember that you are care partners, each with something to give. The caregiver will gradually need to take over more responsibility, but the spouse who lives with dementia will always have a say in his or her care even if this “say” is just communicated through body language.
Use humor and shared history to live well
Humor is essential to maintain a good relationship. Remember the good times to help each other through these difficult times. This is part of living well with dementia for both spouses. Remembering what is possible instead of constantly thinking about what is lost is vital to getting the most out of life, and laughter is a big part of that dynamic.
Stay flexible enough to seek help
Spousal caregivers may have an even harder time turning over some care duties to outside help than parental caregivers. However, every caregiver needs to be firm that he or she needs a life outside of caregiving, as well. Staying in the caregiver role for years on end can take a terrible toll on the caregiver’s physical and psychological health, so caregivers need to learn to be flexible enough in their thinking to ask for help. That may mean hiring in-home care and, eventually, nursing home care.
Seek support from peers
Loneliness can be an enormous part of being a spousal caregiver. You’ve lost a great deal of your partner, who may have been your go-to person when you needed support, so who do you turn to now? Support from other caregivers can be a lifesaver — literally. Find support through online groups on Facebook, or in person in your community, or through caregiver organizations online. Caregivers need other caregivers. There is never a doubt about that.
Stay involved in other activities
Realize that you aren’t abandoning your spouse if you join an exercise class, see an art exhibit with a friend that your spouse would once have enjoyed, or go out to lunch with friends. Bring your stories home to your spouse to enrich your communication. If you don’t do something for yourself, you may find yourself wondering, as many caregivers do, if being a dementia caregiver is as hard as having the disease yourself.
Take care of your physical self
Understand that you must stay healthy in order to be a good caregiver. That means taking care of your own health issues as well as exercising and eating well to help prevent caregiver burnout. Letting your own health deteriorate will not help the person for whom you are providing care. In fact, you would then be taking away their lifeline. So take care of yourself for you, as well as for your care partner.
Take care of your mental health
Mental health is as important as physical health. Meditate, read, go to church, see a counselor, attend in-person or online support groups. Do what you need to do to stay emotionally healthy. Sometimes, in order to find some way to do this, we need to take a fresh look at our caregiving routine. This exercise can help us gain perspective and make some tweaks in our lives that can help both care partners.
Stay in touch with friends the best that you can
Keep up friendships. Yes, some will fall by the wayside, but if you and your friends accept that things are different, some friendships can remain fulfilling. Maintaining friendships will likely take some effort on your part since you’ll need to educate your friends about dementia, but good friends will want to know. Do your part to help them understand what is happening to your family.
Communicate your needs to your spouse
Help your spouse understand that other people can refresh your relationship. See if a friend of your spouse can spend some time with him or her while you go out. Then swap stories with your spouse when you return. This is part of your partnership and it will take work.
Be compassionate without pity
But don’t smother your spouse. Your husband or wife may have Alzheimer’s disease or another other health challenges, but try not to let caregiving define the two of you. Your marriage will stay much more intact as a balanced relationship if you let your spouse do as much as he or she can. We all need to feel like we can accomplish something, a rule that may apply to someone who is ill more than anyone else. Protect your spouse’s dignity by exhibiting compassion but not pity.
Use your voice as an activist
Become an activist for the disease that has claimed your spouse’s health. See if your spouse qualifies for a clinical trial to help with research on his or her disease. Go to a spousal support group with other couples. Organize a fundraiser. By doing these and other creative things, you’ll meet others with the same issues with whom you can bond. Betsy Wurzel pledges to carry on advocating after Matt is gone. Many other caregivers feel the same. Activism seems to provide a purpose for the pain.