Emotional Support for Spouses/Partners of Individuals with Dementia

Last year, Maria’s husband was diagnosed with dementia. In the past twelve months, Maria has providing  care for her beloved spouse while noticing his symptoms worsen. The man who has been Maria’s partner and best friend for nearly fifty years now struggles to recognize her each morning and is becoming increasingly angry as his dementia progresses. While Maria loves her husband, she finds herself bombarded by an array of emotions ranging from sadness to frustration to resentment. Although Maria is comforted by the fact that she’s able to care for her husband, she has also recognized the need to care for her own well-being.

Providing care for an individual with dementia can be an overwhelming task at times, leaving family caregivers feeling depressed, frustrated or even angry. Each of these emotions is a normal response to the progression of dementia in a loved one, and should not be discounted. In order to keep providing care, family caregivers understandably need the support of others to help express and manage their own emotions. However, many family caregivers are unsure of where to find the support they need, especially when the person that has been their “shoulder to lean on” for so long is no longer available.

Take Time Out for Yourself
Providing care for a spouse/partner with dementia can be a full-time job, especially when caregivers like Maria have serious concerns about wandering, falling or possible injuries caused by her husband trying to cook. However, in the midst of caring for a spouse/partner with dementia, caregivers may find stress relief in being relieved of their duties for a short time – if only to take a trip to the grocery store or grab lunch with a friend.  Home care agencies, or respite organizations, like those listed in the resources section of our fact sheet “Dementia, Caregiving and Controlling Frustration,”  can provide relief by placing a professional caregiver in the home thus allowing family caregivers to get out for a break without the worry of their loved one being unattended. Taking Care of YOU: Self-Care for Family Caregivers is another of our fact sheets that can help you, the caregiver, learn to take time for yourself.

Seek Support from Outside Resources
Spouses/Partners of people suffering from dementia may feel alone in their caregiving duties, especially if their husband/wife/partner has been a primary source of support in the past. Seeking support from sources outside the home, however, may help caregivers feel as though they have someone to talk to and express emotions that their spouse/partner no longer understands. Resources that may be helpful include old friends, a pastor, counselors, or a caregiver in a similar situation. Support groups organized through organizations like the Alzheimer’s Association are another resource that offer an opportunity for family caregivers to connect with other dementia caregivers and may provide a sense of community for caregivers who are feeling isolated in their struggles. Or, a counselor can provide an objective ear, as well as advice on how to best handle confusing emotions associated with spousal/partner caregiving. If you’re seeking some resources online that can help you organize all the caregiving tasks in one place and allow for communication to a circle of “caregiver helpers” (family, friends and neighbors that want to help out), try an online tool like Tyze personal networks, or LotsHelpingHands (their videos walk you through how to use the tools).

Like many family caregiving situations, providing care for a spouse/partner with dementia can have  rewarding aspects. However, caregivers need not be ashamed when their emotions are not all positive. Dementia can be a frustrating disease for individuals suffering the symptoms, as well as their caregivers. With a reliable system of support including family, friends, and community resources, spouses/partners of individuals with dementia can be empowered by learning how to manage their emotions― both good and bad―as best they can.

Are you providing care to a spouse/partner with dementia? If so, please leave a comment and let us know where you have found emotional support for your caregiving journey.

6 comments to Emotional Support for Spouses/Partners of Individuals with Dementia

  • Nelly Sossi

    We are from south Texas, mi husband suffer a traumatic brain injury, for more than five years it’s been so hard to see the man I married complete different, taking care of him and three kids… Is hard. Our city it’s so low on this type of groups, the group most close is six hours driving… So tired…

  • aorvik

    Nelly, thank you for sharing your situation with us. It sounds like a very difficult situation to adjust to, but there are resources out there to help caregivers just like you. If you call us at 800-445-8106, we can help locate the closest resources to you.

    Sometimes just finding an online support group to connect with others dealing with similar situations can offer much needed emotional support and encouragement to get you through a particularly difficult time.

  • Lisa Jo

    I have the same situation with my parents in small town TN. I live in CA but quit my job and spend most of my time here now. Mom had a stroke and now has dementia. I think the lack of medical care options, sub-standard facilities and no local counselors for my Dad is more than frustrating. It causes a bad situation to become desperate.
    I’ve talked with someone at the local senior center and often with the nurses and it helps. I haven’t been good at researching online or reading until now. I felt that I was so overwhelmed with the situation I couldn’t do just one more thing. I’m just starting to scrape the surface of online help. I think it’s going to be a relief to find someone to talk with at least. Alz Assn hotline was a lifesaver one night. They’re available 24/7. I’m also reading a book called the 36 Hour Day. It’s been helpful.

  • aorvik

    Thanks for this post as well Lisa Jo, and for the resources you list which you found helpful; these will likely be helpful to other caregivers reading this post! – FCA staff member

  • tucker-tr@hotmail.com

    as a middle age couple ive been caring for my wife for over 3yrs she hashlewybody dementia im burned out very lonely feel abandoned in most ways that causes guilt when thoughts of acting out cross my mind!im old fashion im in this till the end but must survive for everyones sake! thank u for letting me vent this is a great site!

  • aorvik

    Tucker – thank you for your response to our blog post. I’m sorry to hear you are feeling burned out . . . but do know it’s not uncommon. One very effective thing to do, if you’ve no family nearby that can help you, is to reach out to others in your situation. There are caregiving support groups, both in-person and online, and possibly ones for your particular health area. In order to locate resources near you, please call our 800 # : (800) 445-8106. We can help guide you to helpful organizations and people who can share your situation. + Andrea

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