Caregiving: Stress and Burnout

"Be careful. There is now a diagnosis for Caregiver Fatigue." (It is also referred to as Caregiver Stress Symptom.) My Doctor told me this as I was back for another infection. One thing that is rarely considered when a person becomes a caregiver is the stress that this situation causes. I became caregiver to both my Mom and now my brother Reid because of necessity. My Mom asked me to come and live with her because she knew she needed someone who could help her and there were things a daughter could do that a son could not. With Reid it was either lose another brother to death or take him under my wing.

Caregiving didn't start out overly stressful. I always knew I wasn't Mom's favorite because I wasn't a typical daughter. I was a tomboy and was the one throwing footballs with my Dad. I was into science fiction and not into being nothing but a housewife and mother. I just hoped in time she would realize what I was worth and she did. Her death was hard but I moved down South to be with Mike's daughter and grandchildren. No one let me know that he started drinking heavily and I went up to bury him and sell the parent's house.

With the money from the house sale I brought Reid out and had to fight the battle of the corrupt moving company. It started with his going to have his own apartment and realizing he had let himself go for so long that it wasn't going to be feasible for him to be on his own. It went from hospital stay to hospital stay. It went from battling to keep his leg because he didn't let me know in time that there were sores that weren't healing to finally losing the leg. Now we are dealing with a stroke in his right eye and severely diminished sight and fighting to keep his left eyesight.

I had to deal with a crooked apartment house owner to getting a dream place because they knew of them and finding the new place has a mold problem. So now we are battling that. At least these people care and are doing something.

So yes stress and I are on a first name basis. Fatigue and I are too intimately acquainted. So what is stress and fatigue when it comes to caregiving and what comes next.

Fatigue. If you are a caregiver get use to it. It will be with you as long as you remain a caregiver. Stress is another word for caregiving. Burnout? Those close to me are starting to see that as a real possibility. What are these and what can you do about them?

Fatigue is defined as extreme tiredness, typically resulting from mental or physical exertion or illness. It is a feeling like someone found the energy tap and drained it but somehow you have to keep pushing the body to keep going. It comes when your body instantly reacts to a sound. I can tell by a glance and a sound if something is wrong with Reid. Sometimes he will call out "Michele" or "Sissy" and I check to see what is wrong. Unfortunately he talks in his sleep and my nights are frequently interrupted by jumping up and going to see what is wrong only to find him sound asleep. This exasperates the real physical fatigue that working all day to care for someone causes and is now linked with not getting the sleep needed to keep from getting tired.

Fatigue can also be mental. Sometimes I am so tired I can't remember why I came into a room. I am juggling so many things in my mind that I can't hold them all. If my little electronic Pocket PC ever gives up the ghost I am going to be lost because everything goes in there from doctor's appointments, to grocery lists, and everything in between. Without writing it down it becomes too much for me to remember.

Recently the medical profession has started to recognize that there is a state after stress and that is burnout. HelpGuide,org defines caregiver stress and burnout this way.

Common signs and symptoms of caregiver stress
· Anxiety, depression, irritability
· Feeling tired and run down
· Difficulty sleeping
· Overreacting to minor nuisances
· New or worsening health problems
· Trouble concentrating
· Feeling increasingly resentful
· Drinking, smoking, or eating more
· Neglecting responsibilities
· Cutting back on leisure activities

Common signs and symptoms of caregiver burnout
· You have much less energy than you once had
· It seems like you catch every cold or flu that’s going around
· You’re constantly exhausted, even after sleeping or taking a break
· You neglect your own needs, either because you’re too busy or you don’t care anymore
· Your life revolves around caregiving, but it gives you little satisfaction
· You have trouble relaxing, even when help is available
· You’re increasingly impatient and irritable with the person you’re caring for
· You feel helpless and hopeless

So now what? You realize you are stressed and working towards burnout. For many we are caregivers to family members because quite simply we are the only family member willing to do it. It comes to sticking him in a substandard nursing home because that is all that can be afforded or taking on the task yourself. I couldn't put my brother in a nursing home. I needed to help my Mom. I was the only girl among four boys so of course it was up to me to take care of things. That was the way it has been all my life.

The only family here is my niece, her husband, and three children. They are having a real hard time financially. I get the kids over to help when I can and I would never have been able to move without Tristen and his friends. If Reid can ease up on health crisis after health crisis I might be able to turn to some of the senior and handicapped services around here. Part of the problem is that on paper it looks like we make too much money for some services but the doctor bills are eating us alive. I barely manage to pay bills and sometimes I feel I am robbing Peter to pay Paul. Right now I'm trying to see where we can come up with $3,000.00 to get Reid an artificial leg. We are in the situation where Medicare pays 80% and we have to come up with 20%. You know very well that there is no way Medicare is paying 80% of $15,000.00 but that is what they are charging. We aren't being charged what is left over from Medicare payments we are charged 20% of what they are charging originally. If I don't have $500.00 and payment arrangements for $2,500.00 he doesn't get a leg. This is the kind of caregiver stress that we have to put up with.

Some things that are suggested to keep stress at bay is to find some time for yourself. Fortunately Reid goes to bed early while I'm a night owl. That means I can grab a glass of wine and some chocolate and curl up with Pixie and read a book. I love mysteries however Pixie thinks that the culprit is always the "smelly old dog." We may have a few too many dogs here including "Twinkle Toes" upstairs who is the world's clumsiest Great Dane. You can hear him running around and into things at all hours. I've met him and sweet and dumb as a box of rocks do come to mind. The first thing his owner said as he ran over to me was "be careful he doesn't step on your foot!"

Try to get some help if you can. I've got several places book marked for when Reid's doctor appointments ease off. I would love to have someone come over for a couple of hours so I could go to a movie or just window shop. I can get the older kids to help but they can't drive because they can't afford the insurance so it means me driving over to get them.

Trying to eat right is important. Fortunately I love to cook and cook diabetic and heart healthy. Cooking is relaxing and now I know that he will eat almost anything (hold the extra spicy) I can build my meals on what is on sale.

The one thing that I made the mistake of ignoring is my own health. You would think with COPD that I'd know better. I have been battling one infection after another for months. I am now on a three week regime of antibiotics to see if I can knock this infection off.

Have something that is just yours. For me if I didn't have my crafts or art I'd go nuts. I have always been creative so I work on my crafts when I have a few minutes to myself.

They encourage exercise. I lift weights. Usually 132 pounds at a time as I'm moving my brother to and from the wheelchair. I also lift weights bringing groceries to and from the car, cleaning house, pushing a wheelchair, etc.

Try to keep a sense of humor. Trust me it is hard but find something that makes you laugh. Pixie is one of my main sources of laughter. She is a little clown. She knows when I'm down and will deliberately do things she knows will get me laughing. She also has a magical purr and will lay next to me and purr. She sleeps with me and gets up when Reid starts talking in his sleep and I run to check to see whether something is wrong. Her little flip of the tail as if to say "he is asleep and he woke me up!" is priceless.

Music! I can't say enough about how important music is to me. If I could take only one thing with me on a dessert island (with one recharge outlet) it would be my MP3 player. On many nights when I'm having problems sleeping it is my MP3 player that I'll put on. I frequently wake up hours later with the earphones still on and check to see what was the last thing I listened too. I can probably sing the entire Les Miserables soundtrack if you like.

I think the biggest thing to remember is that you are not alone. Their are other caregivers out there. We need to be there for each other.

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ChemBob's picture

especially for us Baby Boomers. So many of us are in our 60s and trying to take care of parents in their 80s and 90s and it is extremely hard. My GF is going through this currently with her 95 yo dad and is now having to help me because I'm going to have to have my shoulder replaced. I sent the link to this to her.

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to both my mother-in-law and brother-in-law; we're not involved in direct care (mom-in-law is in long term skilled nursing, brother-in-law in a "supportive home environment" for those with mental health issues -- it's a few steps up from board and care because they live on their own but have monthly meetings with their house manager) but Mr. Scribe does a lot for them. He goes with his mom to doctor's appointments (she gets transport by her nursing home so that saves him having to get her in and out of the car from the wheelchair), takes her for haircuts (that does require him to transport her with his brother's help), does her laundry (she's got sensitive skin and can't handle the detergents they use) and other errands, takes his brother shopping or to his appointments if the weather's bad (he does take the bus if the weather's nice) and they go out to movies and sporting events together. My support is mainly administrative -- I keep the master calendar so we can keep track of who has what when, and I do research and such when needed.

There has been stress on our marriage/relationship due to Mr. Scribe's taking care of his "other family" -- it would be worse if the two of us had kids of our own but that wasn't really in our sights. Dog willing we'll make it to our 25th anniversary at the end of this month, but all the attention on their needs has kind of pushed dealing with our own ongoing crises (housing, health, what have you) to the back burner. Hoping to finally work in some time this week to deal with some of that.

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studentofearth's picture

Unfortunately, by the time you recognize the problem, it is hard to use the energy you have to lessen the exhaustion.
On the medicare 20%, is it possible to obtain a medicare supplement for Reid? Everyone I have taken care of had standard medicare part A , part B and a supplement policy. I never had to worry about coming up with funds for the 20% for durable medical supplies. The diabetic supplies must be hitting your budget hard.

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Still yourself, deep water can absorb many disturbances with minimal reaction.
--When the opening appears release yourself.

michelewln's picture

The only supplement we could find was if we gave up Medicare and took Humana Gold which we were warned against by nurses who treat Reid. On paper he makes too much on Social Security Disability. Humana is horrible at okaying things. We do have their drug coverage which helps even though the Doctors have to fight for them to give us some of the medicines we need.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

studentofearth's picture

It appears the ability to purchase a Medicare Supplement without restrictions is related to age. If Reid is less than 65 yo state regulations must allow for the purchase of a supplement. There is an open enrollment period for 6 months when a person turns 65.

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Still yourself, deep water can absorb many disturbances with minimal reaction.
--When the opening appears release yourself.

michelewln's picture

He just turned 60. Unfortunately we live in North Carolina and I tried finding something for him and no one could help except to get the D drug coverage. That has helped tremendously however so we are able to do a little more without those high expenses.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

There is supplementary insurance, which sometimes includes a drug plan, that you can buy on the market place that picks up extra costs. Also there is the traditional supplementary insurance - plan g is what I have which I got through Omaha. You dont give up medicare to have either of these, but you can only enroll at a certain time every year. These may pay for additional benefits that could ease your way (may-be, because I know I know the pr is always better than the reality which is frequently dangerous. I dont think people even know the horrors of the nursing home situations in this country. People dont live to tell. For profit means they dont hire enough nurses to get everybody the right medication at the right time, then they add on anti depressants and sedatives so the patients stay quiet -its a form of restraint - not nurses fault but caused by for profit CEOs)

I am caring for my brother also, though, finally, he is stabilized and taking on independence. But the last 2 years was in and out of surgeries, nursing homes and rehabilitation centers which I was on top of everyday confronting and double checking and then of couse we have our sibling issues, (and ditto on the mother love.) I held it together during that time but now am just as you said like the air is knocked out and I cant get it back. Have so much anxiety cant sleep until I found Audible and things like Marcus Aurilius helping me to not resent what the daylight gives to me to deal. The emperor of Rome would say (something like) "you do good and that is good and that is enough. Dont fear, everybody will soon be dead (in the best possible way) so let that go, seriously. Most important are those moments where you actively rest and inwardly attune toward joy."
Does sound from your writing that you know about this. I am just reminding and wishing you well.

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hester's picture

for 7+ years. It was a long slog. But i'll never regret doing it. It's vital to get a break now and then, weekly if possible. hugs

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Don't believe everything you think.

featheredsprite's picture

I realize that you are very, very busy but if you could include an animal in your life, it might ease the stress. I'm a cat person but dogs are more demonstrative and that might be what you need now. You might look at older dogs as they are quieter but still affectionate.

Again, [Hug].

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Life is strong. I'm weak, but Life is strong.

michelewln's picture

I have my little Princess and she goes a long way to keep me sort of sane. Pixster.jpg

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

My kitties saved my sanity!

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Damnit Janet's picture

he is sick and tired. All from trying to help our estranged father who has now signed himself out of the mental health facility at the VA. In the past three days, he has received crisis calls from all sorts about our father. The last one, so far, was from a clerk at a Wal Mart stating he was calling the police because our father had shit himself in the store.

The VA says he is 'medically stable'.

Too bad the VA won't do it's job.

We now are telling callers, "get him to the VA - he's an abused vet - there's NOTHING we can do."

But we are gearing up ... because that's how it's always is. Addicts fuck up their lives and we the kids get to clean up the shattered remnants.

Thanks for this diary. Each time the house phone rings, I shake.

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"Love One Another" ~ George Harrison

I was a caregiver for both of my parents. My mother took care of my sister who died of cancer, then my father until she became unable, so then I stepped in. I was able to work 2 jobs while caring for them, and then Mom developed anxiety disorders (probably the result of being a caregiver herself for so long). I had to quit my jobs because I was on call pretty much 24/7. It was rewarding spending their last years with them and I'm very glad I chose to do so. But, yes, I have suffered from the stress and still continue to even after their passing. The hardest part is feeling unsupported myself, by family, friends, or any social programs. Thank you for sharing your story and showing your support!

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My situation is not as extreme as yours michelewln or some others have described (thankfully) but I was wondering why I had zero energy after working and no longer seem to enjoy life very much. Maybe having a household that includes my 84 year old mother, my husband and 11 y.o. stepdaughter and running my own business has something to do with it?

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NCTim's picture

My PALS and I attended a seminar/conference hosted by The ALS Association and Carolinas Medical Center (Charlotte). A military physchologist, from Fort Bragg, presented the commonalities between caregiver fatigue and combat fatigue/PTSD. Everyone is different and deals with the stress and exhaustion differently. Some people just need a hand and other people need professional help. I consider myself lucky because I have always been pretty easy going and a jokester. I have had about 6 beers in the last year, consider a 420 break therapeutic, lost ~35#, still make it to the gym now and then and cook.

The mental side is tough, but has not been my biggest challenge. I am here to testify that the physical side of care giving is quite challenging. I am dealing with sever mobility limitations combined with involuntary neuro-muscular conditions. Every transfer, change of clothes or hygiene task is a wrestling match. The 35# weight loss was from 205 to 170 and I had been working out three times a week for the past 20 years. No matter, I still tweaked a wrist so bad that I could not pick up a guitar for about six months and I am almost healed, several months, from a tweaked shoulder.

Lesson #1 - Get and learn to use a Hoyer Lift

We are extremely lucky, and the next part is just not feasible for most people. If there is any way you can afford it, have your bathroom remodeled and made handicap accessible. We were both professionals and have a home with a master suite, with a larger bathroom. I had the bathroom gutted and put in a zero threshold shower (VIM), along with a handicap toilet (higher with tank and toilet cast as a single piece) with a bidet, the sink is higher and has a rear drain so you can pull up in a motorized wheelchair. The mirror is on swivels to set it for the person in the chair. Last but not least, while the bathroom is gutted, put a 4' (roughly mid-thigh to eye high area) ring of 3/4" plywood . This gives the flexibility to put hand rails anywhere. Last but not least, use high quality tile. Motorized wheelchairs weigh ~350# and will crack cheap tile.

Durable medical goods. If you have private insurance, be aggressive about getting the big ticket durable goods. Medicare typically doesn't cover Hoyer lifts or motorized wheelchairs.

Interesting story. Medicare doesn't cover drugs, requiring a supplemental policy. However, there is a subcategory of Medicare called Medicare Hospice, which covers "comfort giving" drugs and procedures. We started hospice, in February, and no more co-pays for prescriptions. Pain, anxiety, muscle relaxers, saliva mitigation, tube feeing supplies (including Ensure) and constipation drugs just show up on the front steps. Plus a social worker, nurse practitioner and CNA stop by. Here is the interesting part. The ALS specific drugs and BIPAP typically are not covered. We go to the Duke ALS Clinic (Dr. Bedlack rocks) and Duke has a hospice. The clinic referred us to a different hospice. The clinic negotiated with the hospice and gained agreement to supply Rilutek and the BIPAP in exchange for the referrals. Now the bad part, qaulifying for Medicare Hospice means you fit a statistical model that says you have six months or less to live.

Believe it on not, we listen to music all day. Without it, I think I would go crazy.

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The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -

Gerrit's picture

and so many others do to care for loved ones. I sure hope folks who know of resources and assistance bring those to the table here so that some needed relief could help the caregivers and their loved ones. Best wishes,

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Resilience: practical action to improve things we can control.
3D+: developing language for postmodern spirituality.

So sorry about your situation, michelewln. I truly understand your pain. I am the long-distance caregiver for my mother right now. She suffered a heart attack last November. It's been one crises after another since then. My brother and I have been back and forth from Chicago to St. Louis so many times in the last four months, I could tell you where all the potholes on the I-55 are! I'm so freaking exhausted. I can't even think straight anymore. Every time the phone rings, I cringe. I'm up all night trying to research options and look for solutions. Just when we thought we were turning the corner and had located a great rehab hospital for her and also paid the first month's rent on an assisted living apartment she'd ultimately move to, we get smacked down again. Doc called this morning to say mom is now refusing all medical assistance. He's spoken to her several times and she will not change her mind. They are now looking for a hospice location for her as she is not stable enough to go home. I'm so angry, sad, and tired but I'm trying to accept the situation for what it is. I don't enjoy seeing my mother suffer but she's just giving up and it makes me sad. She hasn't been the same since my dad passed away suddenly about 18 months ago. They were married for 55 years so I know it's been hard on her.

My support circle has been telling me about caregiver fatigue and trying to get me to slow down. Well, I don't have much of a choice now. Mom has made a final decision. Hugs to all facing these stressful situations. So many of my peers are losing parents right now. We're all barely making it through. All I pray for is a minimal amount of suffering for everyone involved.

Thanks for sharing your journey. You don't know how many people you've touched / helped today.

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#FeeltheBern
#FormerKossack

To put aside grievances from childhood and to be as supportive and helpful to each other as possible as parents age.

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Beware the bullshit factories.

amen, wish I hadn't seen the opposite happen just as often.

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my parents passed long ago so I haven't lived your challenges, but this is a story I'm hearing and seeing more and more from my friends.

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riverlover's picture

Trying to slow my breathing. Lexapro withdrawl symptom, I know is the most proximal cause.

I lived for a decade care-giving for my husband. A slow slippage, one health crisis to another until total system failure for him. It was almost a relief when I was physically unable to care for the problems. Most of the last month he was hospitalized. I felt guilty for not being there 24/7 but relieved that he was cared for by nurses. When doctors stop coming by one understands (but feels more defeated and abandoned again). Four days of in-hospital hospice before I got the call at 4:19AM. One of his doctors wrote a condolence letter.

And then my mother. I conveniently live 650 miles away. My sister is local and took lead there. Our mother is now 96 and was just diagnosed with end-stage renal disease. Three years ago I lasted for 5 days as primary caregiver, drank my way through that, ran away and was myself hospitalized with alcoholic hepatitis. And nearly died. I have resisted another visit there. Pour on guilt, liberally. My sister is at the point of belligerence, asking me if I love my mother as does she, and then in the same sentence saying she wishes she would die. Sometimes, I am not sure who "she" is who wants death.

A little over a week ago my dog got a visit with Fatal Plus. I was primary nurse for his increasing geriatric conditions. Again that guilty tiny euphoria at not having to always be half awake to monitor breathing. So now I have trouble sleeping at all. Writing this on-screen has stopped tonight's panic attack. I think.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.