Chaplain's Corner

Alex sat exhausted, weary from far too many nights of interrupted and unsatisfying sleep, feeling as if he may not be able to make it through the day.  The exhaustion has robbed him of his normal motivation; his desire to be productive, to move from task to task with joy.  The exhaustion seems to have moved beyond body to mind and spirit as well.  Yet he is expected to care for others, to be sensitive to and responsive to others needs.  This duty to care that generally is born happily, is now beginning to feel as if it is more than he can bear.

Madeleine made an appointment with her doctor. After the exam and a few question the doctor says, “Madeleine, you are going to have to begin taking better care of yourself.  If you don’t you are going to have a breakdown of some kind.  Your blood pressure is high, you aren’t getting your rest and you have lost quite a bit of weight.  It is my guess you are not eating right either.”  She looks down at her feet, mumbles, “I’ll try to do better.”  But knows in her heart that the way things are all of her attempts will probably not produce anything.

Both Alex and Madeleine feel stuck in situations that look to them to be irresolvable.  They need help but they don’t know where to turn.  They need more help than the odd favor by a friend can provide.  They need help every day, they may need help throughout the night, yet they are not yet willing to admit that they can’t carry on by themselves.

Alex is caring for his wife.  Her battle with cancer started 10 years ago.  The initial surgery and chemo gave her some pretty good years, but eighteen months ago the cancer showed up again, and after several rounds of chemo everyone decided that enough is enough.  Alex has learned to manage medications, he has learned to program an infusion pump, and he has learned to keep meticulous records for the home care staff.  In the last month his wife’s condition has deteriorated rapidly.  The doctor says it won’t be much longer, but Alex doesn’t know if he has even a little bit left to give.  On top of the exhaustion from wanting and working to provide his wife the care she needs so that she can die at home, Alex is experiencing grief, he is beginning to mourn the loss of his wife and friend.  Sometimes he is so sad that when his wife is sleeping he slips out onto the deck and cries.  Sometimes he’s afraid that he won’t be able to pull himself back together to continue on.

Madeleine promised her father that she would never put him in a nursing home.  Her father feared having to live in a nursing home more than anything else in life.  His dad spent the last few years of his life in one and to Madeleine’s father – it was a fate worse than death.  He had pressed Madeleine to promise him she would never put him “away” – that’s what he called it.  A year ago, her dad was showing real signs that something wasn’t quite right.  He wasn’t paying his bills, although he had lots of money in the bank.  When she dropped by to visit, there was food in the fridge that had gone bad and when she checked the pantry it was almost empty.  A neighbor stopped Madeleine as she was coming up the driveway and expressed concern as her dad had been seen wondering aimlessly about the neighborhood at all hours of the night.  It wasn’t too long after that before Dad moved in with Madeleine.  Living with Dad in her home, Madeline soon realized just how far Dad had slipped.  When she thought back, she realized that it had been happening slowly for over a year, she had just ignored the signs.  Now it was impossible to ignore.  Dad had Alzheimer’s.  Three weeks ago Madeleine found Dad in the basement fiddling with the washing machine.  When she asked what he was doing he screamed at her, said it was none of her business and pushed her against the wall.  Madeleine is scared.

Alex and Madeleine are experiencing what is called caregiver burnout.  This is not an unusual condition at all and chances are we all know someone who is in a long-term care giving situation that may be experiencing this condition right now.  The website WebMD has a helpful article on caregiver burnout.  For those of you who may not be able to access this site I’d like to share some of the information in the article.

The symptoms of caregiver burnout are very similar to the symptoms of stress and depression.  When a person is experiencing this kind of burnout they may withdraw from family and friends, lose interest in activities that they previously enjoyed, feel a sense of hopelessness or helplessness, and experience changes in their appetite and sleep patterns.  Those who may have this condition also experience irritability, a sense of emotional and physical exhaustion, get sick more often than usual and may even have feelings of wanting to hurt themselves or the person for whom they are caring. 

What causes caregivers to experience this kind of burnout?  Well, it is never just one thing but a combination of things.  In the article a number of causes are identified.  The first is role confusion.  In Alex’s case he had added nurse and health care manager to his previous roles of husband and friend.  The new roles have pushed the older historic ones into the background.  The second is unrealistic expectations.  Alex is expecting too much of himself.  He insists on providing as much of the care his wife needs as he is capable.  Yet some of the care is aggravating a back problem that he has had for years, yet he keeps right on doing those things that hurt his back.

A third factor contributing to caregiver burnout is losing control.  Both Alex and Madeleine are feeling this.  No matter how hard they work the situation is getting more and more difficult and they are losing control.  Alex has more and more help coming into his home.  His home is no longer a quite refuge but a busy health care center.  He even has a palliative care volunteer coming to spend the night with his wife so he can get some sleep.  But it is weird having all these strangers in the house.  Finally is the matter of unreasonable demands.  Madeleine’s Dad although his dementia is growing deeper quite rapidly, he still remembers his fear of personal care homes and he often says to Madeleine, “Remember, you promised never to put me away.”  It won’t be long till Madeleine can’t do it any longer and this demand that she feels may result in a breakdown for Madeleine.

If you are in such a situation, what can you do?  Things look hopeless, you feel stuck in situation that will only get better if your loved one dies and even thinking that generates guilt that is hard to deal with.  The article in WebMD offers these suggestions. 

Talk about your feelings and frustrations with someone you trust.  Set realistic goals for how much you can give and when you have reached your limits, get help.  Be realistic about your loved one’s disease, especially if the disease is chronic and long term.  Read up on the disease and understand its progression.  Decide at what stage you will seek help and then follow through.  Don’t neglect yourself.  You will only be able to be there for your loved one if you care for yourself.  Eat right, get your rest, and take regular breaks from caring.  Take advantage of all the services available to help you. Take full advantage of what is offered.  If talking to a friend is not enough, seek out a professional to help you work through your feelings of guilt, your feelings of grief and your feelings of resentment that often come when care giving becomes intense.  This may be a member of the clergy, a social worker, or a mental health therapist.  There is no shame in seeking help and when one does, it can be extremely helpful.

No one may be able to change the situation you are in, but being honest about your limits, being honest about your feelings and getting rid of the unnecessary but common guilt that is often experienced for not doing “enough” is often tremendously helpful and can prevent a personal breakdown from caregiver burnout.   Caring for others is good, but there are a time when caring becomes self-destructive.  If you feel that the care you are giving is destroying you, please reach out for some help.