Dementia: Avoiding Carer Burnout

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When I saw my G P yesterday he assured me that he didn’t suspect anything sinister in my symptoms.  He also advised me to: ‘take one day at a time’.   I have a great deal of repect for Dr Sibtain for his support to me; as a patient, and in my role as Facilitator of the Practice’s Anxiety and Depression Group.  So I take his advice very seriously, and wonder if it is similar to: ‘going with the flow’.  However, I am not comforable with what appears to be behind either of these approaches: an unhelpful medical model.

I believe that there is room for a psycho-social approach to dementia.  One that offers hope: rather than watching decline. Sitting back and going with the flow, by taking one day at a time, has never been a way I have approached life.  Any perusal of my C V would indicate involvement in initiatives to bring about change.  I see no reason to adopt any other approach to my role as Care Partner to Maureen. The challenge I now face is to modify my psycho-social model, so that the potential for burn-out is reduced.

Some form of respite has to be an immediate priority.  Again my approach may be unconventional but our Nottingham experience  supports my assertion that a progressive approach to respite has untold benefits.  That doesn’t mean that Maureen and I have to be joined at the hip.  But leaving her in the company of strangers while I ‘hop off’ for a couple of days is not an option.  My plans for the coming weekend may have  to be revised based on the information I received from our social worker yesterday.   It seems that there are no familar faces available for the weekend.  So urgent discussions will need to  take place today, to try to fathom a supportive way forward.

Some have argued that I am a victim of my driven approach to being a Care Partner.  It is possible that I need to review my approach to supporting Maureen.  I am hoping the 7 tricks reproduced from an article in Alz Live will help to modify my approach and improve our journey from now on :

‘How one smart cookie demonstrates 7 tricks to smoothe communication, when offering tea.

10:30 sharp. Green cup with the cracked glaze. Half teaspoon sugar, half teaspoon Equal. That’s how Miss Johnson takes her tea every morning.

When someone suffers from Alzheimer’s disease, there are a million potential obstacles that can turn simple daily rituals like this one into a real challenge for caregivers.

I thought it would be helpful to look at the ins and outs of caregiving through the lens of a daily ritual, to keep something as harmless as morning tea from growing into a monumental exercise in frustration.

Gale Storm, a nurse and manager of education for home health aides at Partners in Care, where I work, offers this compassionate rendition of how a caregiver might smoothly and successfully begin the daily tea ritual:

The Scene

Miss Johnson [name changed], I’ve been with you for two weeks as your home health aide.

I’m Sandy. You remember.

I notice you like your tea at 10:30, in this green cup. I think I can get the sugar-and-Equal amounts right. Is that how you’d like it this morning?

The Takeaway

Tucked into this simple exchange (which very few of us in the crossfire of caregiving will ever get perfect) are seven tricks of the trade.

Sometimes the other person needs time to think … You don’t have to fill all the silences.

1. Emphasize familiarity.

I’m Sandy, I visit you every day… Take every opportunity to reorient the client or loved one to person, place and time. This breeds familiarity and a sense of safety, paramount to a person with dementia. Even with a family member, a dementia patient benefits from simple reminders.

2. Be observant.

In the conversation about Miss Johnson’s tea, the aide introduced the morning ritual by saying, “I notice.” Because familiarity can soften the agitation of dementia, successful caregiving depends on careful observation. Observe favorite foods so you can maintain a successful menu. By the same token, observe whether the person you’re caring for prefers variety in day-to-day meals.

3. Practice good communication.

Active listening and touching on different points can be helpful as a conversation loops around again and again. Clarification and rewording the question go a long way, too. It helps to remember that you can pause in the course of conversation as well. “Sometimes the other person needs time to think,” says Gale Storm. “So give them that chance. You don’t have to fill all the silences.”

4. Seek input.

Asking for your loved one’s input helps foster engagement and dignity. Give suggestions — It’s 84 degrees and humid, so let’s wear short sleeves — but let the elder have a say in which shirt, which light skirt.

5. Let go of expectations.

Gale points out that just because Miss Johnson has had her tea this way every morning for two weeks does not mean she will want it that way today. Alzheimer’s is a disease that keeps confounding expectations. Levels of memory loss and lucidity can fluctuate greatly.

6. Be aware of your tone and facial expressions.

He or she will always respond to tone of voice or facial expression — the very things a well-meaning but stressed caregiver might overlook. Even if you have to fake it till you make it, try to keep an encouraging tone to your voice and smile.

7. Know when to walk away.

If a situation has become combative or overwhelming, take a deep breath and step away (making sure the situation is safe to leave, of course). As Gale notes, “Taking three minutes to go into the rest room is a perfectly reasonable thing to do.”

Marki Flannery, who wrote this piece, is president of Partners in Care, the largest licensed home care services agency in the greater New York City area. This feature was originally posted on Huffington Post.’ 

 If I keep these 7 points in mind they may help to reduce the chances of Burnout.  There also needs to be a progressive approach to respite at the weekend, to avoid Maureen being left with strangers.

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