When Siblings Care for Parents
Whenever a parent needs help with daily needs in order to remain at home, the primary helpers or decision makers are usually the children. This is natural, and good, but can often lead to tremendous stress between the siblings.
First, there is the hierarchy of roles played by the children since birth. Pecking orders are hard to change, but childhood roles may be meaningless. For example, if the eldest has always been the chief decision maker, but lives far across the country, that child may not be in the best position to evaluate needs, or help provide for them. That child may be in denial about the need for care. Or sometimes, the one from far away can see decline more clearly, because time between visits will show a more stark contrast in ability to function, which is less obvious with daily contact. Regardless of who sees the needs, the children have to avoid denial about need for care and accept reality their once strong parent needs help coping with everyday living.
Next, the need for consensus is vital. It is very stressful and potentially counterproductive if the children fight over what care is needed. Communication is one way to avoid potential disputes due to misunderstandings. Keeping everyone informed of changes makes everyone feel part of the family team. Usually one person is in charge, and hopefully that person is a consensus choice. That person will naturally feel stress watching a parent decline, and the others need to understand that. Sometimes the ones farther away feel quilt about not being there, and try to assuage that quilt by second guessing every decision about care. This must be avoided, and if it comes about, one solution may be to hire a geriatric care manager to evaluate needs and give an impartial opinion on what mom or dad needs.
In some cases, one or more children may actually be giving the care, instead of just managing the care. For individuals who qualify physically, and have low enough income and assets, it may be possible to pay that child or children at the going rates for similar care. This must be done in careful compliance with Veterans Administration or Medicaid (Title 19) rules, however, and should not be undertaken without a thorough review and layout of that plan by an elder law attorney who is well versed in both programs. Doing it right can result in significant benefits from VA (about $2,000 per month) or Medicaid ($5,600 per month) to pay for that care, and doing it wrong can mean disqualification.
Paying one or more children can also cause extreme unhappiness with other children, so everyone should come to a mutual understanding of what is to be done, for how many hours per week, and what the rate of pay will be. In our practice, we have had many paid family caregivers, and we try to have everyone in the family understand the needs, the care to be provided, and the effect on eligibility for government aid.
If there is one key ingredient to successfully help a parent in decline, it is to keep a sense of humor. If dad thinks your sister is your long deceased mom, laugh it off collectively as a family, even if it hurts to see such dementia in a loved one. And remember those good times of the past.