For the last 9 mo, I've been seeing my psych about "burnout". Not only have I come to realize it's really depression but she has also modified what burnout is. She has actually shifted each level backwards 1 step. This is mostly going to pertain to those in the same situation as I'm in: sole caregiver & employed F/T with little to no help.
Quick run thru. Caregiver stress usually starts with the level of frustration that feels like you're overworked, breathless and mildly unorganized. You usually put off daily projects til the weekend and feel rushed to get them done, but you're able to do it. You're able to adjust your schedule w/o too much inconvenience to get them finished. This stage lasts for about 1-3 years depending on your LO's needs during the early stages. Here's where you need to be extra vigilant to your condition. Burnout is not frustration but it's anger & resentment combined with a major disruption in your personal care time. You've started to put off doing what you need; not til the weekend; but for a week or 2. You try to do your "thing" while they sleep or are being cooperative. You start to schedule time for yourself a week ahead of time. You've had to adjust your work schedule; if you have the luxury of switching your O/T with another coworker; every other week. The amount of home cooking for yourself has dropped considerably and you've started to stock up on single serving dinners. You start averaging less than 6 hrs sleep/day. You start to depend on FMLA for days off just for additional sleep. Your social time out is down to one night/wk and isn't more than 10 min from home. Also, vacations are planned around major medical appts for you; like dental procedures, yearly physicals to coincide with your LO yearly MRI's, mental evals for ins & court dates. Most of the time, this stage doesn't last more than a year.
We've come to find out, myself & my psych, that this isn't an adjustment period or an acceptance of your situation, but more of ignoring the truth about it. Here's the worst part: what most see as classical burnout is really depression. You've gotten to the point of being on auto pilot. A good marker you've crossed the line is unexplained weight gain/loss over a period of 6 mo; usually more than 40 lbs. Your sleep pattern is extremely erratic to nonexistent. You're on a steady 48 hour day or more. You've started to hire people to do what you used to do to relieve stress because you're running on fumes, like: yard work, house cleaning, laundry, car repair etc. Your hobbies are gathering dust and you sleep on your couch half of the time. Healing/recovery from colds or minor injuries takes weeks instead of days. Your cooking boils down to 1 day a week, and that's for both you & your LO. It takes hours just to get motivated; like myself up to 8 hrs to do laundry since she's still sleeping and that's the most peace & quiet you've had all week. Cleaning is strictly on a "Must Be Done" basis; like the dishes & counter tops. Mail piles up; even though it's paid, you keep it just to remind you because you've been running in circles for weeks at a time.
Your ability to get out is about 4 hours every other week and it's spent at a friend's house so you're able to check in w/o distractions. You realize you can't relax because if you do, you'll sleep thru an earthquake. Your time is the few min between making dinner, cleaning, shopping & taking care of your LO. I've found out over 80% of care recipients have a significant other or family member that helps. Most aren't working F/T. Those that fall into my situation are also single/div males, employed F/T working a non-standard shift; hours other than M-F 8a-6p; with No support & their LO lives with them. DO NOT START w/o seeking psych help for the duration of this. Help IS NECESSARY for Your mental & physical health. Your LO depends on a healthy YOU. God Bless & Prayers for All of Us.
I've been caregiving for my parents (Dad was only a few months) since 2018 and have just come to the point of being willing to let my brother and his wife take over care, even though it means traveling about 7 hours to do so.
I'm working full time (from home) and for the 2 months Daddy was alive, I was awake much of the night because I could hear when he got restless, which meant he had a dirty diaper. He was always very appreciative and said "thank you." He had Parkinson's which made it hard for him to do anything, but he would always grab the bedrail and hold himself up so I could clean him.
Mom was mostly emotional care the first 2 years. She has dementia and was fixated on finances (and I mean VERY FIXATED) to the point we put her SS income on a big page in her "memory book" along with a list of what she spent monthly. She also couldn't remember that Daddy died (still can't) and asks if he is in a hospital but has only had one sobbing spell that lasted a whole day about a year after he passed.
Several months ago Mom had a sharp decline in her physical and cognitive abilities, so we enlisted Hospice's help. They have been a life saver as they get her up in the morning (or if she's up, give her a sponge bath because she refuses to get in the shower) and into fresh clothes.
A few weeks ago she started not sleeping at night and all she would do is call my name which I could hear because we have a baby monitor in her room. After adjusting her meds, she was very over medicated and got her nights and days mixed up a few weeks ago - and that was when I asked my siblings if I could use Mom's money to hire someone 4 hours a day to keep her stimulated so she would sleep at night. That's when my brother and SIL actively offered help. They had always said they would take mom for a visit (a month to forever) and they are coming to get her next week.
Last night on my way home from the pharmacy after my only outing in 2 weeks, which consisted of taking our 2 puppies to the vet for their shots, waiting over an hour and a half there, driving home, dropping the puppies off, then heading the opposite direction to the pharmacy only to find that her medicine had not been ordered (her PCP usually ordered it but I guess he decided to let the hospice doctor do it without letting us know), so I was gone 4 hours.
When I got home, Mom had a poo diaper that had to be changed and she had to be cleaned (20 minutes minimum because she wears a diaper, long underwear, knee socks, long pants and slippers). That was when I realized I cannot keep it up.
I don't know how some people do it for more than a few years.!
Oh, and my therapist has parents about my age and she talks about them almost as much as I get to talk. I'd change therapists but I live in a rural area and it's hard to find one that takes our insurance and since I hate to change anything I don't have to, its easier to let her ramble about her parents. It's like paying to visit a friend. sigh
If you can find an adult carer, then maybe you can get a break here and there. Better yet if you can get them to adult day care. Not always possible I know.
Who knew we were in for this? Ugh
Your story is a cautionary tale for all of us.
feelings of denial I started to laugh in continuous recognition of everything
you state. -and I'm interested
to know how this has impacted on your life and the way you're handling
things now, (with Covid included.)
My L/O (who had had a severe stroke before all this began) is now in a Care Home: so my caring continues in a different way...
I'm still in recovery from the stress of two years of being the sole carer,
(two years of what you have described so accurately!)
my sleep patterns are seriously disrupted etc etc.
I think you and your psych ( and most likely your mother) are doing great!
Tashi
You aren't getting enough sleep, and that is not only hazardous to your health, but also to your safety on the job.
I'm glad that you're seeing a therapist for your mental health. Take care and be safe on the roads.
If this is just venting, that’s fine. Been there! We have all needed to vent at times.
Caregiving can become extremely isolating as well. Welcome to the forum and know that there are many who will offer support.
I read through your post. It sounds like you are seeking help and trying to sort this out.
You sound frustrated which is normal in caregiving. You also sound a bit apathetic, does this sound accurate to you?
Do you feel as though you have severe depression along with some anxiety?
My own journey wasn't one on one caregiving, but more taking on being POA and Trustee of a Trust, assisting with move to ALF, sale of home. Etc. And different in that it was a brother and we were close in age. My own journey was one more of anxiety, all the worry about taking on things I had never done, felt I didn't understand and might make a mistake with, and anxiety over what the future was for my bro diagnosed with Probable Early Lewy's Dementia. I can only remember the anxiety. Honestly at one point I stopped and said to myself "Stop saying you are anxious; admit it. This is stone cold fear". And it was. I got support from those who knew. I had to give up my sense of control, and my belief that everything had to be settled THAT DAY. I didn't need to seek help, but I have in my past younger days, and I kept questioning myself about whether I should. At one point I actually made an appt with a Social Worker who dealt with life passage changes. Cancelled when I realized I could actually teach the first few things as an RN who had dealt with so many patients. My bro died before he could descend that dark staircase down.
Our journey often seem to us unique, but sharing them with others can be such a help. Just knowing we are not alone.