Guilt

At the time of writing this, I work as a Social Worker helping aged people decide on and access the best, for them, care. For some that is going home, for some that is going to a care facility. What intrigues me is the methods that some family members have of dealing with the guilt of their loved one going to a care facility instead of home.

It strikes me as odd how people can “promise to never … [fill in your own ending]”. Never is such a strong word, and in these circumstances they are laden with huge amounts of emotion, promise and ultimately failure. The most common I have seen that causes strife is “I will never let you go to a nursing home”. I have witnessed families struggle for years, tearing themselves apart, destroying their own lives in maintaining a foolish promise to spouses, parents and siblings that are beyond understanding or caring. Often the recipient of their care is also suffering substandard levels of care, because families are untrained and fatigue, and fatigue can lead to elder abuse.

Part of our role is to assess the care needs of an individual and make recommendations to the families. When we recommend that someone needs to go to care due to significant care needs, the meeting covers a process where families need to accept the reality of our data, the consequences of their decisions and finally make a plan for an outcome they can live with.

Frequently families have three major reactions to the data we give them – disbelief, acceptance and relief. Disbelief is tough, because it suggests that we are making up our data. Doubtful family members will try to explain away our results, either by suggesting that our tests were invalid for some reason or excusing their loved ones performance. My favourite quote is “you would do too well if you were 95”. Quite right I wouldn’t, but that doesn’t change the fact that they can’t take their own medication, need help getting out of bed at night to go to the toilet and forget who their own children are.

Acceptance is easy, the facts are as presented and the families can get on with the next bit – what to do with the information.

Relief is often an interesting one. It is a subset of acceptance. More to the point, it confirms what the family suspected but wouldn’t allow themselves to admit. Finally someone else is saying what they thought, but were to afraid to voice. Now they can accept that they can put the burden down, because it really is too hard.

To make a plan, one needs to know what the goal is. Often families say “I want what’s best for X”. That’s very nice, but who is defining “best”? Frequently I see families being guided by X, who no longer has comprehension of consequences, logistics and cost – financial, emotional and time. Another common bias is that best is at home, despite the lack of 24 hour care, despite the lack of general resource, despite the poor layout and lack of suitable equipment. Some families state they will provide the man hours – which takes 8 people to do properly, and they may just manage a reasonable effort if they don’t want a life – or the financial resources to make it possible. If your family is large, and/or rich, this is a possibility. Most aren’t though. As we go through the realistic costs to families to do this option, we often move the people who are in denial past this to the point of accepting that their hopes are not going to bear fruit. In effect, we put a monetary value on their denial and they can see what it is really worth.

I find it very odd that people will refuse to visit an aged care facility, trusting in their memories of what the standards portrayed in the media were 20 years ago over easily accessible up to date realistic evidence. Fear is an attractive agent, pushing us to deny the simplicity of looking at facts and letting the fear go. A large part of the reason for this is my favourite crutch – cognitive dissonance. If investigating the evidence undermines the emotion invested in a stance, then be damned with the evidence.

Once the plans have been made, some families will spend a substantial amount of time justifying to us why this is the right thing. The relief they feel for letting the burden go is balanced by the guilt associated with this decision which they feel betrays some kind of trust. The trust that can be betrayed is not placing someone in an aged care facility, it is failing to visit them afterwards. Yet the emphasis is on the initial breach of contract – “I will never put you in a nursing home”.