Sunday, November 10, 2013

When you should not die at home... caregiver burnout, stress

  • When your caregiver is burned out
  • When your pain isn't managed at home
  • When your caregiver is unable to keep you safe, clean, dry
  • When you cannot access suitable services at home
  • When your care provider is unable to administer medications (i.e., @ 2 hours)
  • When you are up at in the night and need 24/7 care
  • If you live in a rural area without local nurses, or palliative services 
  • If a hospice placement, or hospital bed is available.
Caregivers should find no shame in this. Many, according to a recent Canadian study have found that many family caregivers feel must remorse when a care recipient must be sent to hospital.
My late friend, Kay, in PCCC
Many insist on dying at home, despite the physical, social or emotional situation or strength of caregivers. Burnout does occur.

Yes, you must make your wishes known to loved ones, but there comes a point when common sense means you must put the oxygen mask on yourself, before your loved one. You must survive.

My wise friend knew LTC was the place for her. She died peacefully, in her room, with family around her, in loving care.
My last client told us that if her husband could not manage, he was to take her to hospital. She was very wise.

Yes, you should do Advance Care Planning: end-of-life care.
Many need catheters
Reality must set in, however, and you must ensure that you are able, as a caregiver, to do the role your loved one demands. There is no shame is giving this up to the professionals. This is why we have programs in place. My late mother demanded to go to the hospital at the last minute. In 2006 she had little support that would be in place now, in 2013. I've heard the conversations with nurses who can offer care recipients options. My mother spent hours in the ER the day before she died. If only we had known she was that ill. Comfort measures could have been put in place at home.

Caregivers are seldom prepared for giving medications, changing adult briefs, managing seizures, being afraid to administer pain medications, and may be afraid of taking a break and getting rest.

From a recent Vancouver study: Topf L, Robinson C, Bottoroff J: 
When a desired home death does not occur: The consequences of broken promises
J Pal- liat Med 2013;16:875–880.
Every day, I would set the alarm for every two hours and give
him more meds. And sometimes I would sleep downstairs..
But you are so conscious of him moving around, you may as
well be in the same room. And I think that is why I had this
little episode that sent me to the Emerg, just kind of hit the wall.
I had numbness and tingling in one hand and a dizzy spell, and
I just thought, you know, this isn’t right. I need to check this
out. As it was, I think it was just God saying, you can’t do this
24/7. (67 years, female)
The caregivers in this study revealed unresolved issues in feeling that they may have failed by putting a loved on in hospital. I think it a good place to die, with on-call doctors, CADDs to administer morphine, and staff to turn you every two hours, avoiding bed sores, and providing mouth care that those in end-of-life care may require.

This is why bereavement programs are an important part of grief, mourning and bereavement.
Family caregivers, whether they are involved in the profession or not, are ill-prepared for providing intimate care for a mother or father. The last thing I did for my mother was to change her brief. For many, they do this for months.

This article provides a good analysis of the research:
Caregivers Suffer When Ill Family Members Promised Home Death Die Elsewhere
I know what family caregivers go through!

Search Results

  1. Full Text PDF - Mary Ann Liebert, Inc.($51)


    FCGs were committed to the promises made to care for their family member at home until death. These promises were challenged by a lack of preparedness for caregiving, difficulty accessing professional support and information, and frustration with the inadequate help they received. The events that precipitated dying family members leaving their home for hospital or hospice were unexpected and often influenced by FCGs’ lack of situation-specific knowledge and ability to cope with complex caregiving responsibilities. FCGs found it extremely challenging to reconcile with breaking their promise to care at home until death and many were unable to do so

No comments: