Now what? I think I'm experiencing caregiver burnout

[Watercolors]

I think I'm experiencing caregiver burnout now that I"m finally in my own place after 2 years of first living w/my mother who had a stroke and dementia. Then, moving into my roommate's house, after I transitioned my mother to a nursing home, not knowing about my roommate's diagnosed mental illness and the fact that she'd spend this past year in her bedroom never leaving it, for any reason until I had her committed by the county with some help from her friends and family. She's released now and doing a day program, but has a stay of commitment order that if she misses any of her day program or doesn't comply with taking medications, she will be committed by the state to an inpatient hospital. 

But, after 2 years I am starting to process all of this and its overwhelming me. I feel tired, run down, depressed, and anxious. I can't sleep very well, and my diet is out of whack. Has anyone here been in a caregiver role for a period of time? Can you relate? 

[basil67]

*raises hand*   Caregiver for the last 23 years.    It's crucial for caregivers to be able to take a break from caring or else they do indeed burn out.   Your reaction is entirely understandable.

Is the roommate back with you now?  If so, what kind of load are you taking on?   What are her family doing to assist and how could your life be made easier?

Edited June 16, 2020 by basil67

[Watercolors]

Hi basil, wow 23 years. Family member? Much longer then me so I feel dumb complaining now over 2 years. 

No, I moved out before the roommate was discharged. I was afraid if I didn't move out, I'd be stuck caretaking for her again. I fed her meals, took care of her house, her cat, fielded calls from her family and friends who passed around my cellphone number so that they could constantly check-in with me to find out if she was still alive. Literally, her sister and brother in law called me one night to ask me if my roommate was still alive as she had not been responding to anyone's emails, texts, or phone calls. 

Taking care of my mother was difficult because she had a stroke that exacerbated her dementia. That was a 24 hour job. 

I joined an online forum for caregivers since COVID won't let me attend in-person support groups for caregivers right now which would help. Do you attend support groups for caregivers? 

I hate living alone already. But, I don't want to take care of anyone else anymore. I would like to find a roommate for next year but one who I won't have to take care of. 

[Ellener]

It's so intensive, 24/7 caregiving.

I haven't done it ( except parenting a child ) but I did find myself simultaneously in two stressful living situations where I felt responsibility for a while.

I was just so happy to have my own place ( and it is really great here, nicest place I've lived in years ) but after a few weeks of lockdown I'm starting to get lonelier. I had nightmares for days about my last room mate situation so I'm not doing sharing again or not for a long time, but if I did I'd not share with a friend/rent from a friend and prefer to move myself into an established living situation shared house. I did that in my twenties and it was fine. I am quite a nurturing person so maybe it would work to live with younger people or people with children who could use occasional help...

Carezare.com has a list of online caregiver support groups. They also have a page of links they call 'Your Care Wiki' which is cool. Self-care advice is in there.

My friend was caregiving her mother for 12 years and even now her mum's died she just throws herself into work and helping others ( like me when I was almost homeless! ) She doesn't seem to want to do anything for herself any more, or she's forgotten how. It takes a toll I think.

 

 

 

[Watercolors]

2 hours ago, Ellener said:

It's so intensive, 24/7 caregiving.

I haven't done it ( except parenting a child ) but I did find myself simultaneously in two stressful living situations where I felt responsibility for a while.

I was just so happy to have my own place ( and it is really great here, nicest place I've lived in years ) but after a few weeks of lockdown I'm starting to get lonelier. I had nightmares for days about my last room mate situation so I'm not doing sharing again or not for a long time, but if I did I'd not share with a friend/rent from a friend and prefer to move myself into an established living situation shared house. I did that in my twenties and it was fine. I am quite a nurturing person so maybe it would work to live with younger people or people with children who could use occasional help...

Carezare.com has a list of online caregiver support groups. They also have a page of links they call 'Your Care Wiki' which is cool. Self-care advice is in there.

My friend was caregiving her mother for 12 years and even now her mum's died she just throws herself into work and helping others ( like me when I was almost homeless! ) She doesn't seem to want to do anything for herself any more, or she's forgotten how. It takes a toll I think.

 

 

 

Well, parenting a child/ren is a 24/7 caregiving job and it never stops so technically you are doing it.  😉

This whole COVID isolation is bad for people's mental health. It does get lonelier when you live alone.

Sounds like you had a terrible roommate situation like me that you escaped from too. I watch The Golden Girls and plan to move to FL when I hit my 60s to look for roommates a la Golden Girls retirees. 😜 I mean, why not?! I'm thinking Tampa, FL or Gainsville, FL.

I don't think I could live with 20 or 30 somethings. I did go meet a couple of 25 year old gals who were looking for a third roommate. They rejected me because, and I quote, "We don't want to live with our mom (meaning "me"). Ha. I don't want to be their mom either.

But, I do hate living alone. I don't like it. Never did. It triggers my anxiety. I need social stimulation or I get anxious. 

I will check out Carezare.com for online caregiver support groups. I belong to one on the Alzheimers Association right now. They have a message board and a chat room. 

Your friend sounds like my aunt who caregived for my uncle, her husband, when he was dying of cancer. She is a nurturer by nature like you and I, and doesn't know what to do with herself if she doesn't have someone to care for. Although, when I asked her if I could room with her temporarily, she said no. LOL! So, eh, maybe I'm not on her list of people she likes. 

Caregiver burnout is a real thing. Although I only had 2 years of it, and not 23 years like Basil, or parenting like you which is forever, I still feel the physical and mental toll. Supposedly, it can sneak up on people and create all kinds of health problems down the road related to the chronic stress of caregiving 24/7. Like, high blood pressure, cholesterol, heart attacks, strokes, dementia, you name it. 

[basil67]

Hi Watercolors, I care for our son who is autistic and has an intellectual disability.   It's getting easier as he grows older, and meds have improved his behavioural issues, but he won't ever be independent.

Please don't feel dumb for complaining.  Your experience isn't less difficult just because of what some others are dealing with.   You were doing all this on your own, where as I'm supported by my husband and, to a lesser degree, our daughter.   No, I don't do support groups.  While I'm sure they have a lot to offer some carers, they weren't for me.  One of the thing which worked for me was antidepressants.  Scratch the surface and you'll find that many long term carers have a bit of medicinal help.  Not that I'm recommending it to you, just telling how it is.   

You were really smart getting away from caring for your housemate. It sounds like her family very much took advantage of your kindness.  But now you've got COVID which further clips your wings.   My best advice is to spoil yourself as much as you're able to.   Do the things which you weren't previously able to while you were caring.

All that said, sometimes depression kicks in when our brain is permanently overwhelmed or sad.  Apparently the brain starts to think this is the new normal and can't flick back to how it used to be.   If this is the case for you, I'd suggest you reach out for some mental health support.

take care

 

[Ellener]

5 hours ago, Watercolors said:

you had a terrible roommate situation

The first situation was a trial, but it's my field of work so I just made the best of it, the lady had early stage dementia; her extended family look after her now. She was pretty mean to me but she didn't really know why, and we had quite a few lovely moments too, that's just how it is with dementia illnesses. I think now it was 'meant to be' because her family ( my friends ) were getting angry with her until I said I think she's got memory loss, and they are nice people, they would have been really upset if they'd kicked her out then found she's ill. I moved in with a friend who wanted a renter just a couple of weeks into the pandemic emerging, within a couple of days I'd already asked if she needed help with alcohol, she was plastered when I got up to go to work one morning; she said no and to mind my own business so I did. But she was drinking round the clock and reacting badly to the poor-quality tv pandemic news which she was watching around the clock, it was very stressful- dealing with her reaction to it not my own. I don't panic in a crisis, but she did, then there were nights she was falling down, passing out, one night she hit her head and I didn't want to call paramedics because we didn't know how bad the infection was and weren't supposed to be diverting resources, next day she couldn't remember a thing. I started having panic attacks, then walking miles and miles, which damaged my feet ( I have arthropathy )

The relief on coming to live here, having a home again, feeling safe ( and my dog- there was a whole pet backstory too- as you found people with issues unwittingly neglect or abuse animals ) pushed aside any feelings of loneliness for a while, but I totally understand living alone gets lonely when so much has been going on then- life goes quiet. No wonder people decide to be in permanent caregiver work, or become work-aholic, it really fills a gap.

6 hours ago, Watercolors said:

I need social stimulation or I get anxious. 

I have only hugged one person except my son, a male friend, since the pandemic began. I can tell you how I cope with my anxiety disorder and needs for human contact when it's difficult- I had put one of those massage seats in my vehicle, I have another back massage cushion I use indoors. Aromatherapy. A noise machine with sea sounds and waterfalls. Music. I talk/text/email/snail mail with 5 people a day. Having anxiety disorder is hard on friendships, I have called people in a total state and they can't discern whether it's the illness or a genuine emergency. I had a friend call the police check on me one night ( they were brilliant ) and the same week another friend said do you know you've called three times already- after that I deleted all the numbers from my 'phone for a while. My friends started writing to me! and still do.

All I can say is there has been an amazing gift in every situation. I can't explain it but for all the worry and chaos of the last few years, I do feel alive and capable in a way I didn't, and I look good too, dropped all my weight, got fit, laugh a lot.

You did something kind and loving when you didn't have to, it's very liberating, you're just waiting for your next adventure ( me too! )

[Watercolors]

4 hours ago, basil67 said:

Hi Watercolors, I care for our son who is autistic and has an intellectual disability.   It's getting easier as he grows older, and meds have improved his behavioural issues, but he won't ever be independent.

Please don't feel dumb for complaining.  Your experience isn't less difficult just because of what some others are dealing with.   You were doing all this on your own, where as I'm supported by my husband and, to a lesser degree, our daughter.   No, I don't do support groups.  While I'm sure they have a lot to offer some carers, they weren't for me.  One of the thing which worked for me was antidepressants.  Scratch the surface and you'll find that many long term carers have a bit of medicinal help.  Not that I'm recommending it to you, just telling how it is.   

You were really smart getting away from caring for your housemate. It sounds like her family very much took advantage of your kindness.  But now you've got COVID which further clips your wings.   My best advice is to spoil yourself as much as you're able to.   Do the things which you weren't previously able to while you were caring.

All that said, sometimes depression kicks in when our brain is permanently overwhelmed or sad.  Apparently the brain starts to think this is the new normal and can't flick back to how it used to be.   If this is the case for you, I'd suggest you reach out for some mental health support.

take care

 

Oh, I see. I'm glad that his care is getting easier as he gets older, and that meds have improved his behavioral issues. My sister's middle son has autism. He will always live with them. He will never be independent. He is somewhat non-verbal but attends a high school that he can walk to from their house -- its a few blocks away. He walks there with his younger brother. He is like a living-breathing version of the Star Trek Next Generation android character, Data. My nephew has a GPS in his brain and he loves to map out streets, roads, anything. When they go on road trips as a family, they challenge my nephew with addresses. Sometimes he's quicker than my brother-in-law's GPS. More accurate too. He is my godson whom I love very much. 

And thank you. Yes, I had no backup help from my siblings. I took care of our mother completely alone. It was very isolating. Luckily I had befriended some of her neighbors whom I would visit with, down the hall. Thank god for those people in my mother's apartment 55+ building. They were my emotional support system. 

I'm glad that antidepressants worked for you. I had my cat, who was my home-made animal support therapy animal. That, and I went for a lot of walks. Medications have never helped me with my anxiety or depression. Their side effects made me loopy. So, I just rely on diet now. I have to find a therapist, adopt 2 cats, and revamp my social life and find. full time job after COVID. 

I understand that online support groups don't work for you. I much prefer in-person kind. I tried one at a local community center but yelled at the ladies at my table, after they gaslighted me, telling me that I was too young to have a parent with dementia. They were all married in their 60s. I was about 46 at the time. Very snarky women. 

It's ironic that you observed that my roommate's sister and ex-husband and aunts took advantage of my good nature. They did indeed. But, I let them because I was also in need of shelter. They just took advantage of my circumstances. I should have moved out, but the job I'd got, let me go after 5 weeks, so the apartment I'd signed a lease for, I had to cancel, and then I was stuck there or I could have lived in my car during this winter but chose to stay at her house instead. Do you know, after her discharge, she told me only half of her diagnosis, "complicated bereavement" but my spidey sense tells me its far more insidious -- her diagnosis. Otherwise, she would not be required to complete a day program, or, as a consequence for not, be civilly committed to an inpatient facility here in my city for minimum of a year. So, it has to be quite serious, I think, her diagnosis. I did notice, that as soon as I moved out, and she returned, my "use" to her family and friends ceased. I no longer exist to them. I am just a ghost. It is quite jarring to go from being inundated daily by their texts and phone calls and emails, to complete silence now from them. I feel totally manipulated. And a little angry about it. But I suppose that is part of the caregiver's burnout symptoms. 

I am quite worried about the condition of my brain, too. I do not want its permanent setting to remain stuck in "depression" and "anxiety" mode. Egads. I used to be hilariously funny and entertaining. I had a lot of friends (not anymore). And, when employed, an income that allowed me to do fun things. I need to return to that stasis. 

16 minutes ago, Ellener said:

The first situation was a trial, but it's my field of work so I just made the best of it, the lady had early stage dementia; her extended family look after her now. She was pretty mean to me but she didn't really know why, and we had quite a few lovely moments too, that's just how it is with dementia illnesses. I think now it was 'meant to be' because her family ( my friends ) were getting angry with her until I said I think she's got memory loss, and they are nice people, they would have been really upset if they'd kicked her out then found she's ill. I moved in with a friend who wanted a renter just a couple of weeks into the pandemic emerging, within a couple of days I'd already asked if she needed help with alcohol, she was plastered when I got up to go to work one morning; she said no and to mind my own business so I did. But she was drinking round the clock and reacting badly to the poor-quality tv pandemic news which she was watching around the clock, it was very stressful- dealing with her reaction to it not my own. I don't panic in a crisis, but she did, then there were nights she was falling down, passing out, one night she hit her head and I didn't want to call paramedics because we didn't know how bad the infection was and weren't supposed to be diverting resources, next day she couldn't remember a thing. I started having panic attacks, then walking miles and miles, which damaged my feet ( I have arthropathy )

The relief on coming to live here, having a home again, feeling safe ( and my dog- there was a whole pet backstory too- as you found people with issues unwittingly neglect or abuse animals ) pushed aside any feelings of loneliness for a while, but I totally understand living alone gets lonely when so much has been going on then- life goes quiet. No wonder people decide to be in permanent caregiver work, or become work-aholic, it really fills a gap.

I have only hugged one person except my son, a male friend, since the pandemic began. I can tell you how I cope with my anxiety disorder and needs for human contact when it's difficult- I had put one of those massage seats in my vehicle, I have another back massage cushion I use indoors. Aromatherapy. A noise machine with sea sounds and waterfalls. Music. I talk/text/email/snail mail with 5 people a day. Having anxiety disorder is hard on friendships, I have called people in a total state and they can't discern whether it's the illness or a genuine emergency. I had a friend call the police check on me one night ( they were brilliant ) and the same week another friend said do you know you've called three times already- after that I deleted all the numbers from my 'phone for a while. My friends started writing to me! and still do.

All I can say is there has been an amazing gift in every situation. I can't explain it but for all the worry and chaos of the last few years, I do feel alive and capable in a way I didn't, and I look good too, dropped all my weight, got fit, laugh a lot.

You did something kind and loving when you didn't have to, it's very liberating, you're just waiting for your next adventure ( me too! )

That is quite kind of you to live with your friends' mother who you suspected, and correctly so, of having dementia. You saved her life! Yes, dementia makes them do and say mean things. I endured insults daily from my mother when I lived with her. Sometimes now, on the phone, she'll call me from her nursing home to yell at me but I know its just her dementia.  

To read about your alcoholic friend and the way she gaslighted you, endangered you to a certain degree with her erratic behavior had me totally empathize with you. You had no control over your friend's behavior, and did the best you could with the resources you had. Yet, you suffered from it as a result (panic attacks, over-extending your feet tendons). Not fair to you at all, considering that your friend took advantage of your kind nature the way that she did. Now, I understand your relief, feeling safe, away from her. Did you take her dog with you, I hope? Yes, I know all too well about the way mentally ill people abuse their beloved household pets. My former roommate's cat would be dead, had I not moved in. Even now, I still worry about that poor senior cat's well-being. I would have taken that cat with me, but my former roommate's sister was adamant that I left the cat and animal control told me I'd be legally in trouble if I had. 

You are fortunate that you have 5 people you can communicate with daily from your circle of friends. My circle has dwindled to a few Facebook friends I've known for years. COVID really dampened my social life. I also agree with you that "every cloud has a silver lining." In a way, by staying in grad school while taking care of my mentally ill roommate and her cat and her household while looking for a job and taking care of myself, I have shown myself, that I am capable of being independent and resourceful. Also, that I am a lot stronger mentally than my former roommate when faced with adversity. I don't just shut down and lay in my bed, and do absolutely nothing, talk to absolutely no one. That is just not in my DNA. I am a problem solver by nature. I can't sit still if there's a problem in front of me. HOWEVER, I will never become one of those people you've described (who is like my aunt) who burn themselves out taking care of other people because taking care of themselves is too scary to a certain degree. I think that's my aunt's motivation. She refuses to improve herself, so she distracts herself with other people's problems to solve. I'm not like that. I am not afraid to be alone with myself. I just hate living alone because of the loneliness. 

That is awesome that you feel alive and capable in a way that you didn't before your experience, dropped your weight, got fit, and found laughter again. I'm hoping that this happens to me as well. That I find myself again. 

[Ellener]

6 hours ago, Watercolors said:

You are fortunate that you have 5 people you can communicate with daily from your circle of friends.

I invest a lot of time and energy in my friends, some I've known for decades and we drop in and out of each other's lives quite gracefully, but the loneliness is more about going through another disaster, even my son isn't around this time! 

6 hours ago, Watercolors said:

Did you take her dog with you, I hope? Yes, I know all too well about the way mentally ill people abuse their bel

 No, she kept the pets. My dog was everywhere with me for a few weeks, I never left her there. 

I don't think mental illness is a huge factor in abuse of animals, more their neglect or erratic care. I don't see alcoholism as a mental illness because beyond a certain point it becomes a choice. I've been there, knowing that to drink makes everything worse, and a de-tox and abstinence is the only way to be well. I had a lot of sympathy for my friend in that she just couldn't seem to get to that point and just get on with life, but the acting out and cruel streak, not impressed. 

What was weird was she thought she was doing me a favour me living there, but so did my other friends- they forgot I wasn't a guest, I was paying rent and utilities! That's why I'd rent from and with strangers next time, saying that I will probably not share again unless finances dictate or I fall utterly in love.

6 hours ago, Watercolors said:

She refuses to improve herself, so she distracts herself with other people's problems to solve. I'm not like that. I am not afraid to be alone with myself. I just hate living alone because of the loneliness. 

I am a bit over-involved with others at times, I enjoy helping and supporting people in my work and sometimes I forget I'm not at work, but my health is the priority now. It's a skill I think, happiness, knowing what factors I can influence and enjoying those things no matter what else is going on.

That reminds me of the old-fashioned Methodist hymns though the storm be raging 'round me type words!

Give yourself time to heal and regroup (((((((((((((((((((((((((((( ))))))))))))))))))))))))))))))))))

Edited June 17, 2020 by Ellener
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