Caregiving for a Spouse – social, emotional and physical issues

Printer-friendly version

Family Caregiver Alliance Abby and Earl have been married for nearly 40 years, raising children together and enduring the struggles and triumphs of a long life together. Now, at 65 years of age, Earl has been diagnosed with Parkinson’s disease. While Abby has always made sure Earl had home-cooked meals, clean clothes and plenty of love, her role as a wife is beginning to shift into that of a caregiver.  Earl’s symptoms now require assistance walking, getting dressed and even eating when his tremors are at their worst.

Abby loves her husband as much as she did the day she married him but finding balance to her new role as a wife and caregiver has caused anxiety and confusion for both of them. The strong, capable body of her husband has become weak and painful, leaving Abby to care for her husband in a capacity that she has never known in their decades of marriage.

Emotional impacts: Acting as a caregiver for a loved one of any relation can be emotionally draining, however handling the range of emotions brought forth by the need to care for a spouse can be especially draining. While many seniors who are suffering from debilitating effects of aging or disease also suffer from depression, researchers have found that spousal caregivers may be likely to experience depression at an even higher rate than those for whom they care. Such depression can be spurred by a wide variety of emotional struggles. Care recipients may no longer have the cognitive ability to relate to their spouse, or be physically incapable of engaging in traditional intimacy, leaving spousal caregivers feeling as though they have lost the husband or wife they once knew so well. Many times, caregivers may feel as though they’re adjusting to taking care of an entirely different person, especially with diagnoses like dementia, which can leave caregivers mourning the loss of their previous life with their husbands or wives. While caregivers may feel guilty for these emotions, they are completely normal. Although you may fear talking with others about the changes in your marriage, support groups of caregivers in similar situations may offer a chance to talk about your challenges with people in similar situations. Physical challenges: Emotional strain can have an undeniable impact on physical well-being. Excess stress can lead to poor sleep, increased blood pressure, weight gain or loss, headaches or any other wealth of symptoms. Aside from physical conditions that negatively affect health, physical challenges may present themselves in other ways. For example, wives may have trouble physically helping their husband move around the home due to a sheer difference in weight and size, while husbands may find that their own physical conditions make it difficult to help their wife with mobility. To help work around these physical challenges, it may be helpful to seek assistance from a home care agency, physically able friends and family, or assistive devices like motorized wheelchairs or walkers that can help reduce some of the physical strain. Social considerations: When a husband or wife begins to require care due to the effects of aging or a physical or mental impairment, the dynamics of a marriage will likely change significantly. Favorite pastimes such as travel or meeting friends for dinner may become more difficult and require caregivers to choose between abandoning some of their old habits or modifying them to allow the care recipient spouse to comfortably participate. Aside from a change in socialization habits, some caregivers and their spouses may feel embarrassed to explain their situation to friends. People may find themselves feeling ashamed of how their marriage is changing. This can be a difficult adjustment. Depending on age and circumstance, caregivers may also find that some of their friends are not as understanding as they expected of their new caregiver/spouse role and have a hard time accepting a reduced ability to participate in old activities.  Conversely, some groups of friends may be in a similar situation and may be willing to work together to find ways to maintain social connections that help bolster everyone’s mood and maintain a new sense of normalcy. Caregiving for a spouse can be one of life’s great challenges as you and your spouse figure out how to adjust to changes in body and mind that can be frustrating for you both. However, with a good system of support in place and allowing yourself to experience the wide range of emotions that will inevitably surface, the process can also be rewarding as you endure and conquer a new chapter with the one you love. Support resources can be found in various forms, including family (adult children and siblings) and friends; some of whom may be in similar situations and able to better relate to your feelings. However, family and friends are not always available, or you may be more comfortable seeking support from less personal influences. In this case, support groups of other spousal caregivers can be a place to find comfort and understanding, as well as inspiration and tips from others’ experiences. And when you need a break, spousal caregivers should consider seeking respite care from home care services, or adult day programs. Respite care can provide caregivers and their spouses with time away from one another, which is just as important now as it was at any other time during the marriage. Are you a caregiver for your spouse? If so, please share your experiences, or tips for finding balance in the comment space below. Content contributed by ClearCare, Inc.


Luci, Apologies for the delay in getting back to you. Yes, your situation sounds quite stressful and FCA does help with resource referral. I'm checking with our Family Counselors presently to see if there is any direct assistance/advice I'm unaware of that we can provide to you (will send to you via email when I hear back). By publishing your post here, however, I thought others out there who have gone through (or are going through) what you are presently entrenched in, might be able to contact you with a comment-response. I'm not sure where you are located, but one resource we have for those in California, is <a href="(http://)" title="Link2Care for California Caregivers" rel="nofollow">Link2Care</a>, an online experience/advice sharing forum for caregivers.[edit: sorry, I didn't state that Link2Care is dementia-specific]. Please also try our toll-free number to speak to someone: 800-445-8106. Hope this helps for now . . . +A. Orvik (Communications Coordinator, FCA)

Hi Luci I recently lost my spouse to cancer - and went through stages much like you describe with your spouse. However, he never lost function to speak until the very end. Oh how I recall the fellings of sorrow, sadness and despair as we watched him decline; despite all efforts of chemo, radiation, and other medications. I too was at a loss for the 1 1/2 to 2 years - having little to no support or understanding. In this time, many friends began to stay away - and still do as of this date. This left me feeling even more lost as a caregiver!! Unfortunately, our local area sreems to have little in support groups for caregivers - though there are a couple. However, I could never attend due to the fact that they always seemed to hold them during business hours - when others I may rely on to sit with my husband were unavailable. Anyway, I would love to hear from you any time! I am in the process of setting up a blog for caregivers; that should be up and running in the next one to two weeks. I would love to keep you informed when it is up and running - as another avenue for you to seek out support. Also, if you are at all local to Northern CA, I am going to be attempting to set up a group for caregivers support in my area - allowing caregivers to gather together a couple times a month to support one another, have lunches, dinners or other outings together; and just build new friendships with people in common situations. Feel free to contact me at [email protected] any time. Just place "caregiver" in the subject line so I do not delete it before reading! . :) I hope all is going well for you and your family!

My husband and I married in 1970. He was 23 and i was 20. We have 2 kids born in 73 &amp; 76. In 1993 bill had a grand mall seizure, had an astrocytoma diagnosed, had a biobsy &amp; emergency surgery due to blood clot on the brain &amp; survived. We then had radiation treatments and then it took us 4 years to re teach the English language,what music was &amp; just living our life again....we did not have much hope as 5 years was max for his type of tumour. It is now October 10, 2012... Tumour came back, had chemo for one year. My life has been turned inside out. He may live a long time but his whole being is so hard for me to deal with...this is not the man I married...he is more like an 8 yr old ther any one out there that can send me any words of wisdom? Is there anyone out there that is going through similar situation? I would so love to be able to be in touch with people that can relate to my situation.