Participants in my dementia support group who were caregivers for a parent often commented that they felt that the burden of caring for a spouse or partner was harder than theirs. I’m not sure that I agree. It’s just different, with a different set of difficulties.
And of course, there are other configurations of giving care to someone living with a form of dementia—aunts, uncles, siblings, friends, grandparents, or adult children may need the care.
Since I have only ever been a caregiver to a spouse, I can only speak personally of my experience, but let’s look at both.
Spouses or partners may share a deep commitment with one another, especially if they have been together for many years. They will feel an intense desire to protect and care for the affected spouse, a sign of enduring love. It will not be without cost, of course. The healthy partner will undoubtedly feel sadness at the loss of shared plans, pain over the loss of intimacy, and sorrow that their loved one will have to endure this terrible disease. This was certainly my experience.
It may be hard for an older caregiver to ask for help, feeling that only they can provide the best care, and that it is their sole duty. Inevitably, and eventually, the level of care needed will be too great for an older spouse to shoulder alone, and she or he will find it necessary to look to family and friends, or to hire outside assistance—always a difficult decision.
Over time, as the care for the spouse or partner ramps up, the couple may become increasingly isolated. Perhaps because the unhealthy spouse can no longer venture out, or perhaps the healthy spouse is worried about their loved one’s appearance or behavior. In any event, isolation is detrimental to both parties.
And if the caregiver herself/himself has health issues, the level of difficulty in providing care intensifies.
I realize that what I have written thus far speaks mostly of older couples. My memoir addresses the unique aspects of caring for a spouse with younger-onset Alzheimer’s disease. Two prior blog posts explores this as well. Here and Here.
Caregivers for a parent have some similarities and some differences. If the caregiver was especially close to the parent, the same loss of intimacy occurs. Further, as their roles become reversed, and the care needs of the parent become more demanding, the adult child may feel guilty about making decisions for the parent.
Caring for a parent with dementia can sometimes put a strain on a marriage if the spouse of the caregiver perceives that the marital relationship is unbalanced. The needs of the couple are overtaken by the needs of the elderly parents.
Too, the caregiver may need to quit his or her job in order to provide care to a parent. This can put a financial strain on the family. Responsibilities of rearing children and managing a household may take a back seat as well, further stressing the family.
These two scenarios that I have given—caregiver as spouse or adult child—assume a long, loving relationship prior to the diagnosis. If there was previous animosity, or if the relationship is newer, such as a second marriage later in life, that deep commitment may not be there, and the scenarios can play out in various ways.
What do you think? Is it harder to care for a spouse, or a parent? Why? Or is that an impossible question? Do generalities like this not work, as each situation and relationship is unique?
6 Responses
Your opening words may have easily been words I have spoken before, but I’ve come to believe those differences are just that — differences. Since parental relationships and marital relationships vastly differ, it makes sense that caring for a spouse with dementia and caring for a parent with dementia are vastly different. They are similar in that both are experiences we find life altering. They both involve losses we grieve, especially loss of previous balance in relationship. In my opinion, I can no longer say any grief is harder to bear than another. Dementia forever changes our relationship with another person, no matter what relationship we shared earlier.
Beautifully said, Mindy. Thank you!
Having been a caregiver for my parents, I can speak to that relationship only. I cared for both my parents while Daddy was still alive. After we moved him to the Veterans Home, Mother moved in with my husband and me. I have learned to be patient; I’ve learned to let things go, whether housework or arguments; I’m still learning to deflect, to breathe, to change the subject, and to smile through my tears. The first time Mother asked me who I was, I thought my world had crashed. Now, her not knowing who I am has become so commonplace that my heart doesn’t hurt every time she asks me who I am or tells me something “Carol said…” I still have tears, especially when she begs to go home. Caregiving for me is hard because I don’t have anyone except my husband (other family members) who will offer help. On the other hand, I sometimes am glad that they don’t, for their absence (by choice) makes decision-making easier. I’ll end with a comment Mother made a few months ago: “I may not remember who you are, but you will remember me.”
Hi, Carol! I’m in Murfreesboro, too! My neighbor is a mutual friend, Justyna. If you’re not currently attending any support group, a new organization, We Remember You, has several that meet at First Methodist Church.
I’m glad you’ve discovered my wise and wonderful former physician, Dr. Renee.
Thank you, Katy!
And she remembers that you are “her person.”
Thank you for sharing a part of your journey. I do hope you ask family to help out. And I’ll echo what Katy says below—try to find a support group!