- Disabilities & the Disabled
How To Care For The Caregiver - Stress and Burnout
Signs and Symptoms of Caregiver Burnout
For a caregiver to avoid what is coming to be known as Caregiver Stress Syndrome (Caregiver Burnout) it is vital that they have a network of support not only from the health community but from family and friends as well. As a friend or family member of a caregiver there are some things that you need to know about who you are reaching out to support. Those who are a family caregiver are often the sole or primary source of support for their loved one. In the beginning the caregiver receives support from friends and family but as time goes on they are more often than not left to their own devices as those around them return to the demands of their own lives. Many caregivers are burned out and show signs and symptoms of prolonged acute stress. If your friend or family member has been allowed to reach the point where they are either dangerously close to burnout or have burnt out you will find that the caregiver has lost interest in people and social activities. They often feel as though life has been stolen from them. They suffer from feelings of guilt and inadequacy. They have trouble sleeping, trouble focusing on what is going on around them, they are difficult to engage and lack the desire to do anything. Depression and anxiety plagues them.
When reaching out to a caregiver you will be heading into an area of life that you most likely, and hopefully, no little or nothing about and there are a few things that you need to know in order to be effective in your caring for a caregiver. As with any communication you want to impart to another you have to first know who that other is. Even if you have known this person for a very long time, they will not be the same person that you socialized or worked with. Almost everything in and about their lives has changed for them and it has most likely changed drastically, suddenly and without warning.
You will find that your once orderly and centred friend is now disorganized and dispersed. Formerly helpful and uplifting towards others they are now in despair and feeling isolated and cut off. Where they were decisive and energetic they are now indecisive and unmotivated. Dignity and accountability have given way to shame and guilt. Their kind and appreciative disposition has been replaced with anger and resentment. The warm and harmonious person that you knew is stiff and tense. Optimism has been substituted with skepticism; enthusiasm with indifference; confidence with insecurity; delight with disenchantment; playfulness with restraint; vibrancy with fatigue. What does remain that is recognizable to you is faded at best.
I has been my personal experience that these states are brought about not only because their “charge” often does not or cannot recognize the caretaker’s value, importance and the amount of energy and effort they expend, it is also true of their family, their doctor, their friends and society as a whole. They exist in a perpetual state of non-existence and it is DEPRESSING!
Don't Take It Personally
So when you go in there, when you reach - gear down if you have to because a person in any of the mood levels I have described above will find very high mood level people extremely painful to be around. Observant, Attentive, Mindful, Warm or Good-natured, are the appropriate mood levels to utilize. Caregivers are very sensitive to attitudes so if you would really rather be anywhere else but there – DON’T GO!
If you do go then YOUR prime directive is DO NOT TAKEANYTHING PERSONALLY! The caregiver is not him or herself.
Help For The Family Caregiver
First and foremost is to approach the caregiver gently and put down the big stick. While you are at it put down the little stick and the foam bat as well. Do not, under any circumstances, no matter how well intentioned you are, admonish them. The last thing a caregiver needs to hear is any sentence beginning with the words, You should as in You should - Get out of the house for awhile – go to a movie – take some time for yourself – meet me for coffee sometime, treat yourself to something nice, etc.
Caregivers are painfully aware of what they should be able to do, should that is if their life bore any resemblance to what it had been before they were cast – and I do mean cast - into their current role. They should be able to go out for lunch with friends; they should be able to go out for dinner and a movie; they should be able to get their haircut; they should make a dentist appointment and on it goes.
“Why don’t you…..?” and “Can’t you just…?” can also be stricken from your list.
The next question that has to go is “How is (insert name of charge) doing?” Caregivers eat, live and breathe the answer to that question. In addition to that, they answer questions regarding the state of their charge to a myriad of health professionals on an ongoing basis. If your intention is to give them some respite from their circumstances keeping their attention on what they are already sitting in is not going to contribute anything to fulfilling that intention.
“How are you doing, feeling, coping, getting on?” is also not a good one and it is one they are not likely to answer to honestly. Most people do not like to burden others with their problems is one reason for the reluctance to answer with anything other than the perfunctory, “Fine” or “Okay”. The other reason is anything resembling an honest answer generally results in unsolicited advice and the list of taboo questions above being asked. Further it begs a sarcastic answer, it won’t be said aloud but the answer in their mind actually takes the form of a question, “How do you think I’m doing?” Or, “How does it look like I’m doing?” How they are doing is pretty obvious – not well!
Do not ask them, “Do you need anything?” because that serves only to trigger either a very long list of unfulfilled needs that they will not put voice to or a terse and emphatic response – “A LIFE!” Want is not an effective supplement for “need”, just so you know.
Feeling Like Your Hands Are Tied? Welcome to the Caregivers’ Club!
If you cannot ask any of the above questions and you cannot give any of the above items then: What can you ask? What can you give? What can you do? What can you offer?
Face it, the best you can accomplish is to provide some temporary relief and so it would be great if you could optimize that relief. The outcome then of your interaction with the caregiver would be to restore them to feeling more at cause over an area that they have gone totally the effect of and to elevating their mood level. This is no small contribution to make as it can leave the caregiver feeling more like him or herself than they have in quite some time and it allows them to go about their duties in a positive rather than a negative mood. Both of these are invaluable to anyone, no one more so than one who is the sole long-term caregiver for another or others.
If You Need Help Anytime.....
Now that I have covered the list of what not to ask, I shall move on to the list of what not to give. The short answer is anything that needs looking after such as flowers, plants, or knickknacks. Also, gift cards, movie or theatre tickets, places to eat, spas and the like only adds to their despair and gives them yet another problem to solve as they are no longer free to come and go as they please. It can also add to any financial burden they may already be carrying in that your gift results in them having to pay someone to replace them in their absence or put them in the position of having to impose on family and friends yet again. Caregivers are reluctant to impose because more often than not they have no means of returning the flow and doing something nice for others.
The following offer is off limits; “If you need help anytime just give me a call?” This is an open-ended offer and a caregiver is usually really ‘up against it’ or ‘at the end of their rope’ when they put out a call for help. If you are unable to deliver on your offer, the chances of them taking you up on it again and asking a second time are very remote. The reason for this is that by the time a caregiver realizes he or she is not coping, they are already treading the proverbial water, when they muster the resolve to reach for a life ring and it is not there, they go under, their reach has been cut because you were not able to make good on your offer and it can be a long time, if ever, before they surface again.
No just dropping in to see “how you are doing” and No spontaneous invitations. (You can “drop by” to see if they need anything picked up at the store.)
When you pass through the door, negative comments are unwelcome. So too are opinions and platitudes.
What can you ask?
You can ask “Would you like a ……” a cup of tea, me to spell
you off so you can take a bath or have a nap, to play a came of cards,
other appropriate thing you know or think they might like. A caregiver
asks the Would you like question
several times a day, many times a week, and hundreds of times in a given
they are very seldom asked, “Would you like….?”
They will appreciate being asked that question and it will automatically
serve to lift their spirits. I know this
is supposed to be the do ask list but I must add here on the do not side
ledger “What would you like?” It will produce
a list in their mind’s eye similar to “Is there anything you need?”
And, it will process them down the mood scale
rather than up – remember you’re purpose and intention for being there
uplift them – to assist them. Once you have determined the "like" you
may have to gentle prod the caregiver in the direction of the action
with a command such as "Go take your bath"; "Go have a nap" or whatever
the agreed upon action was; "Go for a walk." The caregiver may be
appear a little dazed or confused. They have been 'breathing out' for
so long it has become habitual, they may need reminding to 'breath in'.
What can you give?
A hug, a casserole, a DVD (something light – something funny, perhaps you can watch it together) a CD, good company (they don’t need your troubles too), a good book (no self-help stuff, just a nice read), pretty P.J.’s, baked goods are a few examples. Oh, and your time and your company!
What can you do?
You can be very clear in your communication, might, maybe and I’ll see can be stricken from your vocabulary. You can do what you said you are going to do when you said you would do it. You can follow through. You can mean what you say. You can be depended upon. You can produce what you said you would produce. You can be flexible – a caregiver is not unreliable because they are unreliable people they are unreliable because they live unpredictable lives. If a caregiver has to bail on you, be understanding but do not, bail on the caregiver. You can validate them. You can appreciate them. You can care!
What can you offer?
Offer to clean or cook. Offer to run errands. Offer to do any light maintenance that may need doing, such as changing a light bulb, folding some laundry, organizing cupboards or weeding the flower beds. Offer to wash the car. If appropriate, offer to look after their charge for a few hours.
You can offer your ears. If the caregiver initiates a discussion about how they are feeling, LISTEN. If they use one or two words to communicate how they are feeling in a friendly manner ask them to describe the feeling and keep gently asking them to describe it until they mood they are describing lifts. You will be able to tell when they have “popped out of it” by watching for the manifestations – laughter, renewed energy, more present, happier, feeling and looking lighter, a sense of relief, a raised mood. Any one of these phenomena or any combination thereof will be the end result of you having had the caregiver fully describe to you their negative mood, feeling, emotion or attitude. Do not add your “two bits worth” just listen and ask them to describe it. The reason this is effective is that a person cannot describe what they are sitting in - they have to move it off of themselves in order to look at it. What you are asking them to do by telling them to describe it to you is to break it down, quite literally break it down until they are no longer at the effect of it.
Now then, when it is time to leave and you give them a hug
do not, and I repeat, do not tell them “Look after yourself.” What
you can say, if it can be said with sincerity, “I’m glad I came.” “I’ll
give you a call next week.” “I’ll be over on Thursday like I
promised.” “It was wonderful to have some time with you.”
If it was a successful visit you have gotten them out of themselves for a
so ending with a “look after yourself” thus pushing them back in to their "stuff", the very state they were in when you
arrived. Indeed if the visit was successful the caregiver will feel more in control of themselves, their own time, their own space, and their own moods. This will result in the caregiver being more solution oriented and having greater reach. The outcome of that is they will begin to help themselves, they will make that call to a support group or to a hairdresser or to organize some help with the housework or some help with looking after their charge.
I have not written this from a professional viewpoint. I have lived it and am living it. I have been well and thoroughly immersed in “IT”. Before I was in “IT” I was training to be and practicing my skills as a Life Coach. I was good at it! I took all that knowledge and all that training and all that practice and beat myself up quite soundly with it. The parts that I missed beating, the circumstances and too often those about me unwittingly took part with their unsolicited advice and their ill-formed questions and their casually made and easily broken promises. I am in the process of emerging. I am in the process of restoring myself – hence the handle “raisingme”. I have a deep appreciation and immense gratitude for anyone and everyone who read this article through to the end – because in so doing you have become part of my new beginning and I thank you from the bottom of my reawakening heart!
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