Ask Dr. Giles: I’m worried that the stress of caring for our mother is causing resentment.

Marg writes:

Our 87 year old mother was diagnosed with advanced CC in early March. The specialist told us that she had 2-4 weeks to live. With this prognosis, my three sisters and I decided that we would take turns caring for Mom at her home where she lives with my father. There was also the option for Mom to go into a long-term care facility, but we didn’t see the point if she only had a few weeks. She lost her position on the waiting list when we declined. This is now the 11th week of caring for our mother and although we are glad that Mom is still with us and not in any pain, the strain is starting to get to us, especially for my sisters who are still working. We all have other family commitments, including my son’s wedding in early July. I’m worried that the stress of caring for our mother is causing resentment towards our mother and toward our brothers and their wives who are not as involved for some family members. How can we better cope with this difficult situation ?

Marg,

I think it is wonderful that you took it upon yourself to care for your mother in her remaining days. Your decision to care for her at her home made sense given the short amount of time she had left. She has lived longer than anticipated which, on one hand gives you more time with her, but on the other hand increases the duration of the significant commitment to care for her personally. Do you think you would have made the same decision if you had been told that your mother was going to live 11 weeks or more?

Given the fact that your mother has surpassed the doctors’ expectations, it would be a good idea to re-evaluate your role–and the roles of your other family members–in her care. I think you are wise to be alert to the potential for exhaustion and resentment which can arise from the requirements of extended care. The following are suggestions of things you may want to consider:

• Hold a family council–with as many family members as possible, even if it has to be done by conference call–to re-evaluate what can and should be done for your mother by her family. The fact that she has lived longer than expected provides a nice opportunity for everyone in the family to reconsider what they can do at this point–regardless what they may or may not have been able to do up to now. Be prepared to discuss the types of care and support needed. Generally speaking there are two kinds of support: direct and indirect.
  • Direct care includes the following:
    • feeding
    • caring for your mother’s ongoing physical welfare
    • socializing
    • maintaining her surroundings (laundry, vacuuming, etc.)
  • Indirect care includes the following:
    • financial support (making sure bills are paid, etc.)
  • addressing paperwork/legal issues (insurance/medicare, details regarding her estate, etc.)
  • interacting and coordinating with her medical team
  • providing support and care for the family members providing direct care (taking their kids to piano lessons, bringing in a meal, babysitting, etc.)
• Re-consider getting back on the list for a spot in a long-term care facility.
• Create a system of ongoing communication in the family (this is another example of indirect care which could be administered by a family member living far away) to provide updates on your mother’s condition as well as upcoming needs. Social media such as a blog, Facebook, or Twitter might be useful to you. If electronic media won’t work, consider a brief letter that is copied and sent weekly to each family.

The keys to dealing with this difficult situation are coordination and communication. The original plan for you and your family was based on your mother living 2-4 weeks. Now that she has surpassed that expectation, you must make a new plan which includes a re-evaluation of the commitments made by everyone in the family and gives each family member an opportunity to adjust their level of involvement according to their circumstances.