One of the issues we consistently deal with is the sense of guilt that family members have when circumstances dictate that their promise to “never put” their dad, mom, grandparent, in a nursing home cannot be kept. Although the reasons why are numerous, the reality is that the vast majority of people alive today will find their last day in a nursing home bed. While we do not favor this outcome, the truth is that the way that we die has changed, and the life that we live before we die is now dictated more by the cost of dying in America.
One of the things that we encourage the family members of our clients to do is to talk with their loved one in care about what they want in their last days. Of course, this discussion is best lead by a Hospice Nurse or Social Worker skilled in facilitating such discussions.
Many of the families are shocked to learn that once the attempt to “escape” the inevitable has passed, people in care tend to have very concrete ideas about what they want. Some people prefer to be pain free, even if it means undermining their mental awareness. Some people treasure their time with family, but want that time scheduled so that they can gather themselves and be lucid for those interactions. Still others will endure a great deal of pain in order to experience every day to its fullest. It is highly individual.
Many family members are also surprised to learn that given the choice between financial benefit for a spouse, or children/grandchildren, an elderly person may actually choose confinement in a nursing home using Medicaid Benefits rather than spending down their life savings on home health or other more socially palatable measures. There can be no judgment from family members, care providers, or Elder Law practitioners in regard to the actual desires of these clients because we do not, we cannot, share their perspective.
Having honest discussions with those whose condition has declined to the point where they need daily, or constant, care is immensely important to replace assumption with knowledge and to become free of the guilt of expectations formed in a completely different perspective.