If you are the oldest daughter living in the same city as an aging parent, the chances are very high that your family will expect you to be the primary caregiver, or to at least coordinate family caregiving efforts. I am the oldest of 9 siblings and the oldest of the 3 daughters in my family, and yet for more than 10 years, until he passed away on Jan. 4, 2017, I had to struggle to get family to help with caring for my dad. Four of my siblings, a sister and 3 brothers, lived 5 or more hours away from dad. They all said they “wished” they could do more, but I saw very few responses to my suggestion of making phone calls or sending letters, if only to let Dad know they were thinking about him or to give him more social interaction. A sister who lived nearby felt estranged from Dad and would do nothing. Two brothers were willing to pay Dad a visit once a week. When she retired, a sister-in-law (brother deceased), helped more than all of my other siblings combined.
A Common Experience
Unfortunately, my experience is not unusual. A new Alzheimer’s Association survey reveals that almost all agree (91%) that family caregiving should be a group effort, yet two in three caregivers feel alone. “American families are unprepared to face the looming Alzheimer’s caregiving, financial crisis [and a] lack of appreciation and support stress family relationships, especially among siblings.”
Far too many caregivers are doing it alone. Two out of three caregivers (64%) felt isolated or alone in their situation, and more than four in five caregivers (84%) would have liked more support with caregiving tasks, particularly from their family.
The No. 1 reason people said they did not help with providing care for someone with Alzheimer’s or another form of dementia was they felt as though another family member had already taken on the responsibility (74%), followed by their not living in the same area (62%).
The Importance of Planning Ahead
“There are currently 15 million Americans providing unpaid care for someone with Alzheimer’s or dementia, and this survey shows that we must alleviate the weight on the shoulders of these individuals,” said Ruth Drew, Director of Family and Information Services for the Alzheimer’s Association. She stressed the importance of planning for the devastating toll this disease may have on people and their families. Survey respondents were less likely (20%) to have discussed their wishes with a spouse or other family member than they were to have made financial plans (24%). A lack of communication can contribute to family tensions, but it’s also something that can be improved upon.
The university neurological center that diagnosed my husband with Alzheimer’s has provided some valuable family support that other families could duplicate. They arranged for my husband and I and our 5 grown children to meet with a social worker. The purpose was two-fold: to educate our children about the disease and its possible progression, and to help us plan as a group for the types of assistance both my husband I might need from them. We also discussed what the children would have to do for their dad if I were to die first. They recommended and we held a follow-up meeting at home to discuss what was learned and what steps would need to be taken when and by whom. Everyone reported feeling relieved to know that we are all on the same page and willing to do what we can to help when more help is needed. We also shared information about our financial situation.
Strength vs. Strain
Findings from the survey show that in some families, Alzheimer’s caregiving enhances family strength and support, while in others, it can tear relationships apart. Relationships between siblings were found most likely to be strained, caused by the feeling of not having enough support in providing care (61%) along with the overall burden of caregiving (53%). Among all caregivers who experienced strain in their relationships, many felt like their efforts were undervalued by their family (43%) or the person with the disease (41%). Conversely, 35% of survey respondents said caregiving strengthened their relationships with other family members, with two out of three of these reporting that they felt like the experience gave them a better perspective on life.
Relationships between spouses/partners were strengthened the most from the experience, with 81% believing that “being emotionally there for each other” was a source of strength they drew upon for caregiving. “Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” said, a Forked River, New Jersey, resident who has been living with younger-onset Alzheimer’s for two years. “My wife, has been my rock as we navigate the challenges of Alzheimer’s. It’s easy to want to shut down following a diagnosis, but that’s the time when communication within families is needed most.”
Whether you are in the process of caring with a family member with Alzheimer’s or simply wondering whether the disease will strike your family, it’s never too soon or too late to recognize the need to plan for and give family support. In addition to help from family members, home health care organizations like Dakota Home Care can ease the stress of caring for a loved one with dementia. Call us today at 701-663-5373 for a free assessment of how we provide support for caregivers.
Resources for Families
The Alzheimer’s Association can help people learn how to navigate changes in their relationships with family members and friends. In addition to its 24/7 Helpline (800-272-3900), the Association offers various resources for families including:
- A new Alzheimer’s Association infographic, offering specific tips to help families resolve conflicts and cope with Alzheimer’s together
- Guidance on financial and legal planning for Alzheimer’s
- Tips on long-distance caregiving and care coordination to help families better manage caregiver responsibilities
- A video series, featuring insights from people living with the disease on how to navigate the personal and emotional challenges that accompany an Alzheimer’s diagnosis
- A community resource finder that helps families connect with local resources by simply entering their zip code