Sharing the Caring: Dynamics in Providing Effective Caregiving

Caring for a loved one suffering from a disease, such as dementia, is always difficult. Families, generally ill-prepared for the situation, find themselves having to shoulder a responsibility of providing primary care they hadn’t anticipated. Thrust into the process, people will sometimes ask: is it healthy to have one person playing the lead? They want to know if one person can manage the caregiving, and they want to know how best to keep family members involved in the process.

Whether it is ideal for one person to provide the care for dad, mom or grandma depends. Caregiver studies show that the people most commonly responsible for providing care are either a spouse or an eldest adult child. Other factors like geography (who lives closest), time and schedule flexibility, or financial means can also contribute. Typically, women provide the most care.

What differentiates between a good and bad situation is not who is primarily responsible, but that the person who is, is able to get help when it’s needed.  Caregiving is a challenging task. Having a leader or coordinator is good, but it ultimately will take a group effort.

Unfortunately, many elder spouses tend to feel like they are burdening others by asking for help; therefore, they won’t ask. That’s trouble brewing. If one sibling is primarily helping out mom, and the others aren’t contributing, tension and resentment rise. The same is true, if less participating family members feel they have no voice in the process. 

All too often caregivers will become overwhelmed with the burdens of the role and neglect their own health or burn out in the process. Caregiving can be highly stressful and problematic for everyone, including the loved ones who are in need of care. 

Some solutions and ideas to think about:

Give everyone a voice. Having a family meeting can help foster agreements to provide better care. Do make sure, however, the care recipient is not in the room listening (do not underestimate how progressed your loved ones may be in the disease, they may be more aware of what is being said than you realize). 

Separate emotion. These are difficult discussions to deal with. Try to discuss the issues at hand, and try to do so without heightened emotions. 

Ask for help, and keep track of what is needed. Whoever the primary caregiver is, have them write out key concerns and where they need help. If there is more than one sibling, involve everyone who is able to assist. Those who live far away may tend to feel guilty, or might voice their opinions in a criticizing manner, which can make things worse, but there are things they can do, such as: providing phone or email support, sending a care package, or learning about the disease to educate all. 

Involve the group. Having one person in charge is OK but that person should never be alone in carrying all the responsibility. Caregiving is a team effort, and as the disease progresses, help will be critical. Involve others wherever possible. Create a schedule for caregiving days and activities. 

Take breaks. Make sure that the person providing the most care gets a break, and importantly, not feel guilty in taking one. It may take some time to be able to go out and enjoy the time alone, without having worried thoughts, but practice is the key. 

The key to success like most things, involves balance. Give help, take help and ask for help. Include each other, rely on each other, and take care of each other and yourself, as best as you can. Good caregiving starts with each person.