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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

 
September 2013
On Power of Attorney guidelines
Sep 10, 2013 4:19 PM

We were estranged from Claire’s husband (her Power of Attorney, POA) for several months - even before she was admitted to her healthcare institution. He refused us any medical information. He banned four family members from going on their property to see Claire. If another sister had not been at her healthcare institution the day she was admitted, we wouldn’t have found out for a month that she was there. When my sister Claire was admitted to the healthcare institution, her husband continued to try and restrict us in terms of enriching Claire’s life – for example: transporting her to our family home (the home she grew up in and in which another sister resides) for a full Saturday, or taking her on walks off the premises. He did his utmost to keep us from taking Claire out - even though he wasn’t spending any time with her. These actions really hurt Claire - she loved the change of setting - it made her happy.

Eventually, after many incidents of restrictions, and having to seek legal counsel, we were given full access to Claire. Her husband didn’t want her anymore and hadn’t for a very long time. We, however, did. We took her out on Saturdays and for walks during the week for about three years until she became wheelchair bound. Then, we visited her regularly at the healthcare institution and did our best to enrich her life. My two younger sisters and I had been with Claire throughout her whole stay at the healthcare institution. I visited her on average 4 times a week (sometimes more) for an hour after work while the twins visited her on Friday evenings, Saturdays and Sundays (sometimes more). Those visits included; depending on Claire’s capabilities feeding her, walking with her, pushing her wheel chair around both inside and out, just to get her off the floor, reading to her, letting her listen to music – she loved her music and would tap her foot while she listened. We tried to be creative and make her happy.

Eventually, her husband sold the matrimonial home and moved away to Windsor with his girlfriend. This was about 1.5 years ago. Needless to say we were very grateful as that meant there was no danger of seeing him or of him causing us (or Claire) any more pain and aggravation. By this time however, Claire was in a wheelchair, couldn’t speak and was eating pureed food. Unfortunately, about 1 week before Claire passed away, he came back. By the middle of June, Claire was seriously failing. She was on oxygen and morphine for pain. When her husband returned, much to the apprehension and consternation of her family, he sat in the room with her - I was able to convince him to let me take the night shift with Claire. I was on leave from work by that time and ‘allowed’ to do the night shift which meant I could have my beloved sister to myself without her husband around. This worked well until I came into her room around 7 pm. Her husband was sitting there. He left and my sisters arrived. They were going to stay with me until about midnight and then go home. At about 11:20 pm, her husband returned. He said he was staying the night, so we went home. As we were leaving, one of the twin sisters glanced back down the hall and Claire’s husband was watching us, as if to make sure we were leaving.

The next day I phoned and let the charge nurse know that I was available to give her husband a break if he needed a rest. NO ONE phoned me back to let me know anything was amiss. A friend went in at lunch time and was told NO VISITORS were allowed to see Claire. Her husband had returned to Windsor but would not let anyone in to see her. One of my sisters is a lawyer so we contacted her and she e-mailed him and told him it was illegal - her family had every right to be with her. He told the administrator that I was trying to force fluids down her - my other two sisters included. He told them she was at risk in our care. The administration banned us and everyone else so in her final hours Claire had no family members with her. The accusation was totally untrue. I am a former Registered Nurse and would never endanger a patient, let alone a much beloved sister. We had not given Claire anything by mouth for weeks. On Tuesday morning my husband and I went in to see the administrator and assistant administrator. The first thing they said was that there was a safety concern. IT WAS NOT TRUE. We weren’t even given the chance to defend ourselves. No one even asked the staff who has known us for four years to refute the allegation. My husband offered 24 hour Personal Support Worker care that we would pay for so we could have ‘supervised’ visits with Claire. This was at 10:30 in the morning. By 3:00 pm we still hadn’t heard back from Claire’s husband so my husband called the administration. Her husband had refused. Can you imagine? We offer to give his wife 24 hour care when she has very little time to live and he refuses (while he sits in Windsor!). At 3:30 my husband and I go back to see the administration - thinking surely we could work something out. I was beside myself with panic and anxiety. I was ONE floor above my dying sister and all I wanted to do was hold her hand and tell her I loved her.

The assistant administrator, when she saw us said, and I quote: “I don’t have time for you right now”. My husband got very angry and said this was wrong - how can you do this to her family? At about 6 o’clock that night (5:43pm to be exact), my sister the lawyer received an e-mail stating that we could have a supervised visit in the next few days from 1:30pm-4:30pm. That was maybe the cruelest thing of all. Claire was in Cheyne-Stokes respirations by then and her husband, as well as the administration, would know that. A trusted and highly respected person told me that on the phone. They knew that she wouldn’t last the night and yet they refused me and anyone else visitation. The cruelty is beyond comprehension. At 6:30 am a few days later I received a phone call from a staff member who was on the floor that night. She was phoning from a pay phone and said she could lose her job for this but Claire had passed away. How can someone have that kind of control that even staff members are afraid to tell a person they have seen regularly for four years that her beloved sister had died? Why couldn’t we be with her? We did nothing wrong. No one stood up for Claire - she would have wanted her sisters with her. No one stood up for us - her loving family.

Her husband would rather she die alone (as he had left already) than have one of us with her. How could that happen? We had no rights and her healthcare institution's administration shut us down - with no proof or any support, they denied Claire her family when she needed us the most. Something needs to be done to change the P.O.A. guidelines. Her husband was not even instrumental in her daily care. We were. But because of what he said, even though it was totally unfounded, our rights and Claire’s wishes went unheard. The fact that we couldn’t be with Claire those last hours will torment us and cause us anguish forever.


  

 

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