Let’s Talk About It: Sibling relationships change as parents lose capacity

As a parent moves into a world of dementia with increasing care needs, children will often react differently. They don’t always perceive their parents’ disabilities, not wanting to face that their parents are no longer able to care for themselves. Denial is a very strong force that protects us from seeing a painful situation. But when a parent has dementia, denial could be dangerous because it leads to neglect and the inability to secure proper care.

Having to adjust to changing family roles, where a child is parenting the parent, adult children may need professional assistance.

The best-case scenario happens when open discussions have occurred with the parent when capacity was not in question, and the parent has assigned different responsibilities to each child. For example, the child with the financial skills may be the one to manage finances and make financial decisions based on the early requests of the parent. (Hopefully this is spelled out in the parent’s mandate in the event of incapacity.) The child with sensitivity to the parent’s philosophy to health care may be mandated to make decisions in that area. That child need not be the hands-on fulltime caregiver, but would manage home care or residential care.

Some families work amazingly well. Siblings have close relationships and understand each other’s strengths and weaknesses. Through discussions prior to diagnosis, they are able to work in sync for the best interest of the parent.

But this is not always the case. Families are complicated. Some siblings have a history of difficulty relating to each other, resulting in limited communication. Old wounds come to the surface that interfere with the parent’s care and drive siblings even further apart. Caring for a parent with increasing needs is hard work and can cause anxiety and depression in adult children. Bringing in loving family members and friends and having open discussions about responsibilities can help.

Certain situations bring up damaged parent-child relationships. One child was seen as the favourite and another may have had a tumultuous relationship with the parent leading to resistance to helping care for the parent.

Siblings may not agree regarding their parent’s care. It is not a case of one sibling caring more, but rather different views on what kind of care would be best. I worked with a family where the two children lived in different parts of the world, both caring and having the best interest of their father in Montreal, who was diagnosed with dementia. One child came to Montreal and worked hard to find the most suitable residence for her dad. She believed he would benefit from the social contact in the residence. Months later, the other daughter arrived and felt that her dad would be happier in his own home with 24/7 care. She removed her father from the residence without advising her sibling or the residence, and lined up full-time care giving. The parent was doing well in the residence; then again he seemed to be content at home, but clearly lacked social stimulation. Both children felt that their plan was in their father’s best interest. The siblings came to terms with their father staying at home with full-term care and eventually their relationship strengthened. There was no right or wrong.

There are other complications. One sibling may be financially better off than the other. The concern for a healthy inheritance may interfere with choosing a care plan for the parent. There may only be one sibling living in the same city as the parent, who will often bear the burden of responsibilities, doctors’ appointments, overseeing the care, visits, food shopping, etc. One sibling may have a heavy work schedule, while the other is unemployed and thus doing more for the parent. Resentment often builds and sibling relationships become more strained.

There is no easy answer. The best way to avoid difficult relationships is early discussions with parents and well-thought-out mandates. While siblings may come together for the most important decisions, it’s the day-to-day responsibilities that can cause the most stress. Again, open discussions among siblings can help prevent damaged relationships.

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