The Healthcare System Gets a Failing Grade When it Comes to Supporting Caregivers of those Living with Dementia

Photo by Yannis Papanastasopoulos on Unsplash

I helped coach a caregiver and his friend through what was a very stressful and horrible day. It ended well, but the experience leaves me angry and I thought I should share it, in the hopes that it will help someone else.

This is a true story of a father and son. Names and other identifying information has been changed to protect identity and confidentiality. I will call the father Mr. Smith, the son Donald, and the friend Krista.

Mr. Smith, 62 years old, was diagnosed with dementia about five years ago. He and his family learned about this diagnosis while he was a patient at the hospital. His son had told the hospital staff that he and his partner at the time couldn’t look after his dad at home any longer and there was no other family members who could look after him. The hospital told the son that if he didn’t take his dad home, he would be sent to a homeless shelter. This didn’t sit right with Donald, so he took his father home.

Fast forward five years later. Donald calls me to say his father has been needing increased care and supervision. He needs to be fed, showered, dressed, and on three occasions he has left the home without notice and was unable to safely return due to his declining cognition. He was unsafe to be left alone for long periods of time. More recently, Mr. Smith left the home and the police were called. Mr. Smith was found on a bus. He didn’t know where he was or where he was going. This was the last straw for Donald. He knew it was time to have his father placed into long-term care.

I advised Donald that he could call Home Care and get the ball rolling for either home care services (which they tried in the past but had failed) or an assessment for long term care, such as personal care home admission. Donald said that it was getting too difficult for him to manage and that he needed this dealt with, urgently. I then advised that he should take his dad to the hospital and tell the medical professionals that his dad is not safe and he can no longer safely and adequately care for his father at home. Donald is the only care provider and told me that any other family members who are aware of the situation agree with the hospitalization and potential admission to personal care home.

Donald and his friend Krista took Mr. Smith to the emergency department that had a shorter waiting time than the other hospitals. They arrived at 9:00 am with an anticipated three-hour wait. I had coached Donald on what to say when he and his dad arrived at triage. That seemed to go well.

What didn’t go well was the three-hour wait turned out to be much longer. Mr. Smith was starting to get agitated. He didn’t understand why he was there. Donald didn’t know what to do so he asked me if I thought he should leave his dad there. I advised against it, however, Donald was getting very stressed and I suggested he talk to the nurse to let them know how he was feeling and to find out how long the wait was going to be.

Donald asked the nurse what would happen if they left. There were four people waiting ahead of Mr. Smith. The nurse at the time said, “Just let us know if you leave.”

Donald and Krista decided to wait another hour. When the hour was up, Donald called me again. He said, “We want to leave dad here, but are worried about what will happen if he decides to leave the hospital.” I said that now that he is in the hospital, he should be safe. The nurse had told you to let them know you are leaving, so if you must, just advise them and then go.

When he told the nurse (a different nurse as there had been a change), they told Donald that he can’t just leave his dad there. Donald said, “Well, you have two security guards at the door, so why can’t you just watch him so that he doesn’t leave. We don’t want him to get hurt.” They then told Donald that if he left his dad there, it would be considered “elder abuse.” Krista immediately responded with, “Don’t go using that term. You don’t know what we have been through. We are here because we want Mr. Smith to be safe. We don’t want a burnt out son and a possible mental breakdown on our hands.” Donald then said, “I have no legal authority over my dad. I have no Power of Attorney, I don’t run his life for him. He is not well, he has dementia, and he needs more care than what I can provide for him. I can’t take him home.”

I told Donald that he in no way would be guilty of elder abuse and that that was an absolutely inappropriate and unprofessional accusation by the person who said that. I told him the hospital have a very vested interest (and responsibility) in keeping his dad safe. I said, “Could you imagine the front page news tomorrow if, heaven forbid, your dad was injured or worse yet, killed, after he left the hospital under their watch?” It would not be your fault, it would be theirs. You have done all you can do and you are done. You are to be commended for the care and concern of your dad until now. It will take a team of trained staff to look after him. You can’t do it anymore.”

Soon after this, they miraculously found Mr. Smith a bed. Donald walked with his dad and the nurse to the emergency room bed. The nurse asked why Donald was following, and he said he wanted to make sure his dad was settled before he left. The nurse told Donald that there were going to be a lot of people seeing his dad, such as social workers, and other professionals and that this may take a while. Donald was satisfied, told them to call with any questions, and with that, went home.

The fact that Donald was accused of “elder abuse” is absolutely unacceptable. This absurd, unfounded accusation towards a burnt-out, stressed, grief-stricken son is horrific. I feel so badly for Donald. He had to basically “surrender” his dad to the healthcare system. One that has failed Mr. Smith and his son miserably. I sometimes wonder if the emergency departments do this on purpose in situations involving dementia – delaying the exam so long that the family decides to take their agitated, confused, frail loved one home rather than wait. Things have to change.

Donald went above and beyond over the last few years to care for his father at home, on his own. Home Care was tried, but it didn’t work for a variety of reasons. The healthcare system fails our family member caregivers time and time again. I see it and hear about it quite often.

For example, I know a dear older woman who is the wife of a man with dementia. She is also stressed and wanting to get her husband on the list for personal care home (PCH). She went through all the proper channels and she was told that he doesn’t qualify for PCH as he is “still able to do so much for himself.” She is burnt out, grieving, and at a loss for what to do next.

Our healthcare system here in Winnipeg, Manitoba needs to change. It needs to recognize the stress put upon the caregiver of a person with dementia. Our healthcare system needs to stop blaming caregivers, and telling them that they are guilty of elder abuse, when in fact they are doing the most difficult thing any loving family member can do (surrender their loved one to the long-term care program) to keep their loved one safe and cared for, while at the same time saving their own sanity. A caregiver already feels shame and guilt. Why add more pressure?

If you need any coaching, advocacy, or counselling regarding the difficulties associated with dementia care, please contact me for a free 15-minute consultation.

Angela G. Gentile, MSW, RSW

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