I've always been good at hiding my pain/emotions and to just keep going, as my therapist said, I’ve been a slow boiling frog. I’m confused at how one is recognised, officially, for actual burnout.
I’m a full-time carer for Mum as well as working full-time hours from home to make ends meet. I have flexibility to some extent with my work hours but I’m still expected to work the normal full-time hours. Let’s say that I take 3h off to deal with Mum’s matters, I then have to work an extra 3 hours. Yes, I could take sick leave/carer leave but as this is an ongoing/daily thing, there’s not much point. I’ve also been forgoing lunch to try catching up on time. I will snack, but while working. So basically between the hours of 8am-9pm, I’m not getting a breather, either I’m working or dealing with Mum. The caring off course goes beyond 9pm. I’m usually getting up several times a night for Mum and typically getting a total of 4-5h sleep, a little more on weekends but still interrupted. Mum has been on several waitlists for aged care, and I am the only family member, no other relatives. There’s meant to be an opening soon. Having said that, I feel like even then, it will take time for me to recover! I’ve actually looked into clinical studies to be a test bunny for new medicine simply so I could have someone cater for me while I just lay there, which is sad. That is the extent of my tiredness.
Im pretty sure I’m experiencing burnout.
I have brain fog and difficulty concentrating.
I'm not retaining new information.
I am in a constant state of fatigue and even when tired, I’m restless to sleep.
I haven’t had energy to exercise for over a year
I don’t have any social life left or time for myself.
I'm too tired at times to eat dinner and have been falling asleep on the living room floor often.
I keep forgetting things / lose my train of thought.
I get irritable/depressed, experience heavy chest.
Getting puffed out from just walking up a staircase or even talking (used to be an active fit person).
I have a constant feeling as if I’m getting a cold but I don’t get sick. I get a rough throat, sore eyes, feel cold/shivers, but don’t get actually sick.
Losing time, I feel like hours just go missing.
I'm too tired to attend to a lot of chores. I only do what is absolutely necessary and the House is looking a mess/un-organised.
Don’t get me wrong, I do all the necessary bits for Mum. I feed her, wash her clothes, shower her, change her and her bedding, etc., but myself is a different matter.
My doctor knows about my caring responsibilities and I’ve also been seeing a therapist. Despite this, my therapist suddenly left to work at another clinic with no warning and my doctor has only issued me with sick days here/there!
What does it bloody take (excuse my language, just so tired) to be properly recognised that I’m not OK!
I would like something more substantial from my doctor! I feel like I’m not being given any choice but to just keep going. I’d like something more supportive from my doctor so I could request time off work / part-time hours. It’s probably too late for it now (if Mum does get her aged care spot August), but had I been given this choice earlier, I could have received gov support (in Aus) for being a carer and worked part time instead of burning myself out. I just don’t get it! I’m also frustrated about my therapist situation. I was dealing with loss/grief and my therapist left as well.
Without some form of documentation I am treated as per any other employee with same expectations.
I don’t understand how for some it’s so easy to get something supportive and I’m literally having tough luck. A neighbour went through something similar a few years ago (she’s better now), but she didn’t have to work for a couple of years and instead received sick pension. I’m not wanting something to that extent but boy could I do with some flexibility/understanding to recover!
Honestly at the stage of soon staring blank.
much. You hate being a caregiver, but you can’t find a way out. Being a caregiver is a mental health crisis, but very little is being done about it.
Basic needs are:
3 healthy meals a day at a normal pace,
7-9 hours of uninterrupted sleep,
enough time for necessities- your doctor appointments, hygiene, trips to toilet, dressing, hair/makeup.,...
time off every day to do something pleasurable (at least an hour!)
extended time off every week to do fun things with people you enjoy,
Your basic needs are not being met! I suggest you add helpers for caregiving so your basic needs are met. Ask family, friends, and members of your faith community. After getting all the volunteer help you can, supplement with paid help (housecleaning, yard service, sitters, home health aides, adult day care...) If need be, get mom into an assisted or skilled care facility temporarily so you can have some respite.
You have more than caregiver burnout. I think you also have depression and anxiety. You may even be suffering from PTSD (Post Traumatic Stress Disorder).
I know it is to get no help and to feel like you're in life that's not worth living.
In therapy I described my caregiving living situation with my mother to living in a P.O.W. camp. Every minute in a 24-hour day is spent in waiting for the next crisis to happen, the next berating, the next chastizing, the next belittling, the next fight. So you're living in a constant state of panic and crisis mode. This is not sustainable long term because at some point you lose it and will get sick.
When a person never gets a break, or any socialization, or even such a small thing as someone else making them a cup of coffee, it takes a toll on your mind and your body.
Find a different therapist then apply for the 'sick pension' which I'm assuming is like American social security/disability? You need it and should get it.
Your mother will be placed in August and that's only a few weeks away.
It is not going to get better unless you change the circumstances.
A few options are:
Look into adult Day Care in your area. Most will pick up in the morning and drop off in the afternoon. That gives you a full day to work in peace and maybe a bit of down time as well.
Hire caregivers that will come in M-F from 9:00am until 5:00 pm. this gives you a work day that is uninterrupted. And if you can have a caregiver on a Saturday that would give you 1 day a week that is your day.
If full days are not possible then partial days are better than none.
this next one is difficult...
Realize that mom requires more care than you alone can give her. Placing her in a Memory Care facility will give her socialization that will keep her involved, it will give you a break.
I said when I was caring for my Husband that I would keep him at home as long as it was SAFE.
Safe for HIM for me to care for him
Safe for ME to care for him.
Safety is not just physical safety but mental/emotional safety as well.
Placing someone in Memory Care, or Skilled Nursing if that is appropriate is not a sign that you have failed as a caregiver or a daughter but it is recognizing that she needs more care than you can provide safely.
If mom is ever taken to the hospital if you can talk to the Social Worker and explain that you can no longer safely care for mom they may be able to find MC that would have an opening.
You might also want to look into the possibility of Hospice.
With Hospice you would have a Nurse that would come each week, a CNA that will come at least 2 times a week for bath or shower. The CNA would also order supplies. And you would get equipment that will make it easier to care for her.
Make sure your mom is on multiple wait lists and check in with them often. The squeaky wheel gets the grease.
Put any energy you can muster up into getting mom where she needs to be. That is going to be your light at the end of the tunnel.
Have you asked the doctor specifically for what you want? For instance, have you asked him for the papers that you say others got?
...and moving your Mom to aged care spot will not decrease the burnout. It just mean more changes to your life so that you will need to adapt to a new normal. There are new challenges and some more difficult, in that phase too.
Look at your life now and start prioritizing what is important to you, all of it. You being at your Mom's beck and call covers too many responsibilities. Break them down and keep on breaking them down and see if you can get help on some of these responsibilities. You've got to let some of the non-essential responsibilities go and delegate others. You've got to set boundaries on your time. Think of yourself as caring for a toddler, all over again.
Sometimes, we just have to make the difficult decisions.
Hope you find help here.
In US, you could get dr to fill out FMLA papers to notify employer about your/your mother's medical issues. The form would indicate if you need to be off work for a certain period of time or just intermittently when the medical issue kept you from working, Some companies pay employees during this 12 wks of being off, but it can be unpaid leave if you don't have your own sick leave or vacation leave saved up. It basically, holds your job for you for a protected period of time. We do have disability assistance for those who qualify (like sick pension, I guess), but it all comes down to what is wrong with you. Some people apply and get denied for the first two years. Comes down to maybe you can't earn money being a carpenter anymore, but you could still work as a customer service rep. Only certain clear cut disabilities get a quick okay for the disability payment.
As far as caregivers getting help in the US, it really comes down to what kind of help you can afford. And help is very expensive. Most caregivers are exhausted, just as you describe. There's not really any pill or medicine to get you over the exhaustion hump - only rest helps that. And rest is something you don't get when providing 24/7 care to another person.
Your doctor probably does recognize that you have too much going on. The problem is there is no social service or medicine that can really help you. It's possible, his suggestion would be that mom needs to be in a Nursing Home to get others involved in her daily care. --- I understand the struggle. I hope that your 'help' really comes through and you can take a breather.
If you have a good friend or someone you have connected with over this that could go with you to this appointment and advocate for you better than you might be able to advocate for yourself, take them! Most of all let Mums care be macitence right now and totally focus on yourself here and now not tomorrow. Stop trying to add more tape, you are not out of line or exaggerating, others don’t have it worse your just that strong and we are all only so strong. Give yourself permission to rest some of those stoic muscles, your body and mind know you have earned it your instincts, muscle memory are just holding out. You will get through this and you still have some control as to how, how much is scorched or not in the process. Sending you strength.
I myself, feeling that I am in a crisis situation, do these things:-
Cry a lot
Phone Silverline- or the Samaritans. These helplines have people
who will listen to you. You can tell them the truth about whats
happening and how you feel and they are kind and do not judge you.
They help me so much when i feel overwhelmed.
Yes, you are burned out. You are doing a great job. Now adjust your
schedule putting taking care of yourself as first priority. You
can do it! Take a deep breath. Take space for yourself.
My love is with you.
We can complain all we want to friends, to a forum, etc.
The thing is:
ONLY YOU CAN (AND WILL) SAVE YOURSELF.
No one else near you, is REALLY interested in making things better for you.
Plan a better future, how ever that plan might look.
“simply so I could have someone cater for me while I just lay there, which is sad. That is the extent of my tiredness.”
I was recently in the same situation (“someone cater for me”). I was on a plane, business class. Suddenly all these people were catering to me: “Do you want more to drink?…Do you want a warm blanket?…Another snack?”
Suddenly I noticed how good it felt to have someone “caring” for me. (They’re paid to speak nicely to me…but anyway, it was a nice change for once, to be the one cared for.)
I even fell asleep and noticed they automatically placed a blanket on me. It was nice.
OP…only you can save you. I’m trying to save myself, too. I was gone for work (hence a few days of not thinking at all about caregiving). It was great to be back to normal life (not thinking about problems, caregiving). For the 1st time in a long time, my mind was just on my work.
We must find a way to save ourselves.
Yes, you are burned out and stress causes a lot of your problems.
Have you spoken to your employer especially about one employee getting help and you not. Not really sure what you can do. Maybe Country Mouse will chime in.
Your doctor clearly doesn't get it - many(most) health care professionals don't have a clue unless they have their own first hand experience. Don't be stoic when you visit your doc, tell him/her emphatically you are in crisis and need a medical leave of absence.
I think that you know already that you are and likely have been in burnout for some time.
The question now comes to placement. Because a full time job and 24/7 caregiving can/may kill you.
The decision must be yours. I think you have sought the proper care; if your physical has been comprehensive including a treadmill, ultrasound for the heart--if you continue in therapy, then you have done what you can on that front. But no one of any age can do two full time jobs, one that is 24/7, without risking their own life.
Again, the decisions must be yours. I think you have the information. I am so sorry, but attempting to do the impossible when we recognize it is impossible? There just is no "fix" for this situation, that comes without grief. I believe you should now do placement for your clearly much loved Mom.
Yea been burnout for a while,... my therapist is the one that made me realise that it’s slowly creeped up on me without noticing, especially with the lockdowns last year.
im not so much attempting to do the impossible but feel like I have no choice. My decision has been to place Mum to aged care but as I said, it’s been a looong wait. I can’t afford to quit my job altogether as I’ll have no income and lose everything. I have reached out to desired aged care places but many times the response is,.. there is currently no vacancy in the memory unit. I will add here,.. placement is more limited as Mum would be entering under gov scheme,.. ie not paying 500k-1mil as a private residence. Most of the places have limited spots for gov assisted. I’m sure if Mum owned property, sold it and went in private funded, we would have already found a spot!
I understand the risks but just feel stuck! I can’t see myself just dropping Mum to hospital and saying cya. I’m trying to last until she can enter aged care but would love more support from my doctor that I could then work reduced hours. I don’t understand how others have managed it. I even worked with a colleague 10yr ago who was recovering from burnout. She was given adjusted responsibilities and hours the same as an injury. I’m also aware of work cover cases at my jobs that involve burnout (but due to work). Obviously mine is not the fault of my job,.. but personal circumstances. Maybe that’s the key,.. maybe burnout is only recognised if caused by workplace and not under personal circumstances.