Ways to manage burnout?

I like the idea (below) of the family conference call (zoom is best so that you can see everyone). I would prepare for the meeting in advance so that you can clearly state what you need. The ones who live further away could perhaps visit on occasion and give you a break. The ones who live closer with work or family obligations will just have to help regardless. It’s not fair that this is all falling onto you. No wonder that you’re depressed. You deserve a life that is truly your own, not one that is spent in servitude. All best.

We all get it. I dream of a life away from this endless Groundhog’s Day

I feel your frustration. Think about this , if you're not taking care of your own mental health you can't be 100% to who her helping. You are just as important your happiness is also important. I feel you deserve and need a break. Ask someone that really cares about you to give you a weekend off. To help with your Dad's care for the weekend. 2 weeks is a long time when your taking care of someone all on your own. If family can't help then they at least should be willing to pay for a weekend of help to give you the break you deserve. I wish you luck and I'm sorry for your situation.

Burnout happens when you caregive so much that you neglect your own needs. Start with meeting your basic needs: 7-9 hours of uninterrupted sleep (they need it too), 3 healthy meals at a moderate pace (no quickie meals on the run), a couple of hours each day to meet your health and hygiene needs. After you have your basics met, focus on getting your social and "happiness" needs met: a couple of hours "time off" daily to do things that bring you joy and at least 1 "day off" per week so you can gather with others you enjoy being with. Lean into getting respite care, family, friends, members of faith community and paid helpers to give you "time off" and "day off" in your life.

Sometimes, people in your life want to help but don't know what you need. Some can give direct care for your dad and others can give your help: laundry, housecleaning, running errands, groceries, yardwork... Let those you know what kinds of help will lighten your load.

There are no easy answers to burnout.
Everyone's coping abilities is different; situations / needs/ responsibilities are unique-different.

What I did:
* Make time for myself - as I could:
- Meditate
- Exercise (go to gym) - get the energy out
- Get enough sleep
- Keep a journal
- Not over (or under) eat
- Not numb out in self-destructive ways

You do whatever you need to do to get a(n inner respite).

What I suggest:
* Consider if your dad should be placed in a nursing home or facility now.
* Is he terminally ill? Not all hospice patients are (either way, it might be best for you - and him - if he is in a place where he can get more round the clock support / care. I know this is hard.

Realize:
* You deserve a life.
* You have / are doing a lot (if not too much for too long)
* If you do not take care of yourself, you will burnout - mentally, emotionally, and physically decline. I would not diagnose you/r feelings (as another did below).
* Call Hospice and talk to the administrator.
- What are you offering to my Dad / what is he entitled to receive (specific care)
* Whatever Hospice doesn't cover, hire caregivers for 1-2 days a week (or more) so you can get day(s) off. It isn't a vacation ... it is renewal.

And ... IF YOU DO NOT

You will not be able to function 'well' enough to care for him, let alone yourself.

Yes, you are tired and not wanting to keep doing everything over and over again. You must make some hard decisions, with your family.

I do not understand why all this responsibility is on you.
Perhaps due to you living with your dad and the rest of the family having their own family / responsibilities out of state/area (as you indicate). Yet, the responsibility of caring for your dad SHOULDN'T BE TOTALLY ON YOU.

While I do not know the living situation, if you dad has a house, it may be time to sell it so you'll have funds for his care in a facility. Although, if he is already in Hospice, the situation may require different considerations.

If I were you:

I would have a conference call and let everyone in the family know how you are feeling and that you cannot do this 'alone' (most of the time) anymore. You need to enlist their support - be it financial or coming out regularly to care for his needs.

You focus on whatever brings you some joy or diversion.
Be sure to include some self-care like a WEEKLY MASSAGE.

You also start making plans for others to take on some of the responsibility / needs. You will continue to burnout as you say if you do not make some changes.

Let us know what you do and how you are doing.
Call your family asap and have that conversation.

I don't know what condition your dad is in - if he has dementia, can understand, be a part of the decision making for his care - ? If he is involved, you must remember that he will want what he already has - YOU. He likely won't want strangers helping, moving, etc. However, you MUST start thinking about yourself and your own quality of life / welfare.

Believe me, this is a rough rode ahead as he continues to decline.

The longer you continue on like this, the more difficult it will be for you to function. This will adversely affect your emotional, psychological, and physical health. You need to get the support you need now so he will have the support he needs later on.

You need to start self-care now. These are hard decisions to make.
Moreso, this society overall doesn't support us to put our self first or feel we deserve to. You not only deserve to, it is a necessity for you to continue on.

What if you fall or have an accident, then who takes care of your dad?
Things happen. Life happens. You have to be prepared.

You do what you can. REALIZE this is all you can do. If you do not stop and make changes now, your health will force you to make changes. You will end up in an emergency situation ... and that is the worst time to 'try' to make decisions that serve you / the family, and your dad.

Gena/Touch Matters

You say burnout, I say depression.

You are ill because you have made your father's welfare more important than your own and haven't looked after yourself.

Part of dealing with your illness could be changing your mindset and learning to accept your situation. Yet, I don't think that's a real solution - it's just a makeshift bandage that may well help you for a little while, until it unravels - and you along with it.

So, yes, do what you can to build resilience and, for a while, adapt your expectations of life to accommodate your new normal. However, don't continue to shrink your world, otherwise you will end up making yourself small to fit inside it. That won't be good for your long-term health - both physical and mental.

You need to get out, to see nature, other faces and other places - not just the four walls of your father's sanctuary. He's the one who's life is closing, not you.

What is the worst thing that would happen if you left your father for an hour every morning? For half an hour every afternoon?
Can you really stop every bad thing that could possibly happen by being there 24/7?

And, finally, who would look after your dad if you had a breakdown and became incapable? Whoever that is, perhaps it's time for them to take over before you become that ill in the first place.

I hope that the hospice does provide respite and I hope that you find an alternative arrangement for looking after your dad.
Your life is just as important as his.

Hospice may offer a volunteer to come sit with your Dad for an hour or two once a week or once every two weeks. That is really not long enough to be much help as a break for you. If the patient is appoved, Medicare may pay for up to 5 days of Hospice Respite Care in an approved facility, but only once every billing period (90 days or more). At two weeks in, you are just beginning! Be patient in adjusting to a new routine. You can be research respite options or perhaps other senior services in your area that might have volunteers to help you with some things.

I was always trying to see if I could work something out with the agencies but the requirements were too rigid (mostly having to do with time minimums and set schedules). So after some WONDERFUL advice from this forum, I went on NextDoor and sought out independent caregivers. I found someone wonderful who is 6 minutes from where we live. Sometimes she'll just come over for an hour so I can get a break. I go shopping or close my door and nap.

And I too now have a glass of wine at night, Endo. My mom has one every night so I join her on some nights. My glass may be bigger than hers but it helps...

I also try to go to bed EARLY so that I can get up early before she does. Then I get to workout --- A BIG HELP and just putz around. I also let her sleep a little later. Instead of getting her up at 7:30 (what was once her normal time) I will let her stay in bed until 8:15. More time to myself.

Calcifer94: Prayers sent.

I suggest actually requesting the 5 day respite every 3 months from the hospice management. You don’t know for sure until you ask.

I find listening to my personal music takes me to my personal space where everything around me melts away. I figure it’s like yoga and meditation. It’s said that catatonic patients become animated when they hear “their” music. Music that reminds them of younger, healthier days and times. You could consider playing music for your Dad also. He might like that.

Vent! Maybe a support group with people you like. This is of course if you ever get help that gives you the time. 

My highest benefit comes from strenuous use of my body. It helps my 77 year old body tremendously - damaged and compromised as it may be. About 45 years ago my doctor treating my RA advised me to lift weights using canned goods while sitting down watching TV. If prisoners can figure how to exercise in their cells, anyone should be able to do the same. It makes everything is better like mood, sleep and life in general. It should help you and in turn your Dad.

 If not you, then who? Sounds like it’s time to pass the hat amongst family to cover the cost of outside help. Some family may be able to help more than others. The part time caregiver may come from a number of places. The issue is finding good, hardworking, stable, trustworthy people. A good sign may be their wanting to help you with housework once employed.

I identified with your post. Thank you. Take care.

Here is what I wrote in my book "Dementia Care Companion"
My mother’s patience is wearing thin as she cares for my father. She regularly curses at him and has even told him to “Either get well, or die!” She still refuses to hire outside help, worrying that she can’t trust anyone to do a decent job.

Caregiver burnout is a result of physical and emotional exhaustion and is a real risk among dementia caregivers. When a caregiver commits more than they are able to, or when they do not have adequate help and support, burnout is often the result. Burnout transforms the attachment and affection a caregiver feels toward a loved one to neglect and indifference, and may even lead to more severe forms of patient abuse.
·        Watch for signs of burnout in the main caregiver. The symptoms resemble those of acute stress and depression.

When Is Burnout Most Likely?
Caregiver burnout is most likely during the period when the patient is experiencing a lot of behavioral changes. This is the period when the patient usually becomes attached to their caregiver and shadows them wherever they go. This in turn results in the caregiver experiencing all of the ups and downs of behavioral issues as they happen in real time.
·        Task another member of the family with a hobby or activity that the patient enjoys. Do not engage in that activity with the patient yourself so that they start to miss it. Then, when the person who is tasked with the activity says, for example, “Let’s go get some ice cream,” the patient is more likely to accept.
Risk Factors for Caregiver Burnout
It’s important to face dementia with sincerity and humility. See dementia, your loved one’s needs, and your abilities and motivations as they are, and not as you’d want them to be. Adapt yourself to the reality of the situation because it will not adapt to you.

Unrealistic Expectations
It’s tempting to hope that your loved one will recover from dementia, as they might from another illness. But, dementia is progressive, and there is no recovery. Focus instead on improving your loved one’s quality of life. Find ways to manage the symptoms of dementia; discover ways to connect with the person in your care; and figure out how to better help them cope.

False Assumptions
Initially, you may feel that you can provide care for your loved one single-handedly. You might even feel that you have no choice in the matter. It is important to realize, however, that both of these are mere assumptions, and neither is true. Accept that caring for a loved one with dementia is not something you can do alone, and that you can find help, if you look for it.

Lack of Control
Lack of experience or knowledge, financial hardship, and lack of support from family and friends can all contribute to a general feeling that one no longer has any control over one’s destiny. Regain a sense of control by organizing your care program around routines and schedules so you can foresee and manage issues rather than constantly having to play catch up.

Depression
It is difficult to notice the warning signs of depression when you’re consumed with the demands of caregiving. As depression takes hold, it becomes even more difficult to recognize what is happening or muster the energy to do something about it. It is imperative that you stop depression early in its tracks, before it does the same to you.

Confusion in the Role of Caregiver
The caregiver who is a child or a spouse or life partner has to take on the role of a parent or guardian now. The love and affection that they’re accustomed to seem to have disappeared, replaced by unreasonable

If dad is on Hospice Medicare, Medicaid WILL cover a Respite. It is about a week in duration. So not a long time but is is a break.
AND Hospice HAS to have Volunteers that will sit with a patient.
It is usually limited to about 4 hours because a Volunteer can do no "hands on" care. They can offer food or drink but can not feed a person. They can not give medications but they can present medication that has been placed in a cup.
As a Volunteer I have sat with patients on occasion but there are Volunteers that have weekly visits they make.
PLEASE talk to the Hospice Nurse, CNA or Social Worker about getting Respite and then getting a Volunteer.

By the way check with your local Senior Center find out if they have Volunteers that can come sit while you go out for errands.

And if he is a Veteran find out if he may qualify for services through the VA. Contact your local Veterans Assistance Commission or your State's Department of Veterans Affairs. You could also contact the VA and ask to talk with a Social Worker.

I’m 80 years old. Soul caretaker of Alzheimer’s husband. I’ve Always been strong. But now I don’t know whether to encourage myself to be resigned to stay home or do all I can to get out. I’m about nuts dealing with the every minute decisions I have to make for him. What to wear, when to dress, when to bathe, when to eat, and how, etc, etc!!! And he argues about each one.:(

I took care of my mother back in 2012-2013 when she was 92-93 at home. We had some help at home, but my mother sent them out saying we do not have to pay for that kind of help, even after she fractured her back in a fall. When she had fallen too many times because I took a break in my room, shopped, walked outside, even had lunch with friends, my brother in OR State sent her to an AL up there. I had lost too much weight because I was burnt out and unemployed. I was happy to be alone, even isolated, without my witchy mother with her mental problems.

Dear Calcifer94,
I am where you are, constantly dealing with caregiver burnout while I care for my husband with dementia. A friend recently recommended a book by Viktor Frankl: MAN'S SEARCH FOR MEANING. Frankl was a psychiatrist who was imprisoned in Auschwitz during WWII. The first part of the book deals with his struggles while a prisoner, the second part talks about his psychiatric method. I found inspiration in the first part, seeing how he endured such suffering and rose above it to survive. My troubles seemed small in comparison and it somehow gave me courage to be strong in my own present situation. The second part gives various case histories with his strategies for managing difficult issues, one in particular being insomnia. I highly recommend this book to you and wish you all the best!

Maybe you could contact your local Area on Aging, a local house of worship, a local college, etc., to see if they have any volunteers who could sit with your dad an hour or so here or there. That would give you some breathing room, to do something that's beneficial for you, like going for a walk, for example. When Hubby and I took care of my mom for 5 years when she had Alzheimer's, sometimes 1/2 an hour walk was all I needed to re-group, re-coup and re-charge.

My husband has end stage dementia. He's in hospice and his aide stays with him for 3-5 days while I travel close by. She also will sit at night while I go out to dinner with friends. He goes to daycare 3x/week although he could go 5 days. Hospice has 5 day respite every 60 days but he was basically ignored in the nursing homes. My life isn't cheap but an absolute for my sanity!! You need to get out and start calling around for services. Good Luck

Speak to your dads doctor to recommend how you can get help
youre tired and normal reaction is to start getting irritated and then the health complaints start!
talk to the doctor and care people on what options are available to you
do you have free legal services you can use?
please do it asap
its a lot quicker to get ill than to restore your health
best to you

Adjust. Tell yourself that this will not last forever. Learn ways to do things that are more efficient, such as order EVERYTHING from Amazon, Walmart, your local supermarket, or other. I haven't been in a food store since March of 2020 when the pandemic started, but we have continued to eat as we always did by ordering what we need. You really do not have to squeeze every head of lettuce, and their shoppers have never done a bad job for me. Plus many people I know got Covid shortly after visiting the supermarket to squeeze the lettuce, so it's likely a good place to avoid. I'll never go back to my former shopping habits.

I like TV series that go on and on, such as many seasons of Virgin
River, Call the Midwife, Lost, etc. They take me to another world, and I find myself looking forward to the next episode. My husband, and I was his caregiver until he went to memory care, could get involved in those too, so we both enjoyed them. I have books from my library delivered electronically to my Kindle and read them there. I have Kindle Unlimited from Amazon. I sew for my house - throw pillows, dining room chair cushions, nothing complicated so it's soon finished. If I were still a knitter, I'd do that. Getting involved in solitary projects interests me and requires no participation from others who don't show up, expect food on the table if they visit, or create other problems, such as criticism about caregiving that I don't deserve or need. I practice Yoga from DVDs that I already had or along with a teacher online or on TV. I'd rather do it in-person with a good teacher, but I've been doing yoga for more than half my life so know about alignment, using props when necessary, and when to quit. I call friends who live far away so we can catch up. I participate in this forum. I'm on Facebook. I manage all our finances.

It's a matter of realizing that this is all there is NOW, it won't always be this way, and it's actually wonderful to be left alone instead of being expected to contribute to outsiders' requirements such as I had to do when I was part of clubs and committees. Ugh. I don't have to bring a cake or chips and dip. YAY!

Finding contentment with being housebound along with your LO takes some work. Some things that helped me....

Praying and studying the Bible. This one is the most important. I couldn't have and wouldn't have come this far without my Faith. Caregiving is a high calling and I need daily help from The Lord, because I'm not strong enough to do it in my own strength.

Getting back to reading books. My son suggested that I start reading again and it's been great. I can sit with my mother and enjoy a good book.

Exercising. I find time every morning - about an hour - to work out with my dumbbells and kettlebells. Stretching and mobility and balance work is also very helpful.

Eating as clean as possible which means lots of protein and very little junky stuff.

Gardening. Get a baby monitor or camera and take it outside while you enjoy some fresh air.

Cleaning out small areas. Maybe a drawer or part of closet.

Looking at caregiving as a blessing and not a burden. Caring for a LO in a most vulnerable period of their lives will be very fulfilling and rewarding in the end.

Realize that you are not missing out on anything. I had a real struggle for years thinking that everyone else was out there living their "best lives" while I was a confined, trapped care-slave. Now I know that's a lie. I haven't missed anything.

It can be a long, tough, exhausting road, no doubt. There were many days over the last 8 years that I was miserable and thought I was going to have a nervous breakdown, but I'm so glad now that I haven't given up and I have been able to keep my promise to my mother that I would care for her.

There is no greater love than to put aside your own self-interests for the opportunity to love someone else more than yourself.

Peace and blessings.

I rest on the couch and read. Relaxing when I can recharges me. I don't like getting out but if you do, then go for a walk or a drive, go shopping or meet a friend for lunch while dad naps.

I know exactly how you feel and this is my boyfriends Mom. He helps if I ask him to but I shouldn't have to ask. They are both overweight where I am 160 pounds and trying to take care of the house and her and I am slowly becoming to realize my life sucks. What kind of insurance or is he on Medicare. I had to ask around but still no help. I Pray we both make it through this. Also I was going to tell you to try resources around you like senior services or senior care. My heart goes out to you.

One of my ways of relief is my church. Church friends are invaluable! They call and come over to provide me relief. Another are my wonderful neighbors and friends who come to visit a couple hours at a time. I am also blessed to have terrific grown children who can work from home and bring their work here for a day. My beautiful dil is a licensed RN not working who comes weekly to spell me for periods. I realize how blessed I am and I’m not boasting. Just trying to say These are some ways to develop for you to get some short periods of relief. We’re in this for the long run! Be creative. Take care of yourself ! Peace and blessings!

All hospice agencies have to offer a 5 day respite either at their hospice home or in a nursing facility. And you can request it every 90 days.
So call your hospice agency today and get your dad set up for his 5 days of respite.

As others have said - you need time for yourself in whatever way you can. Each day . In the house - yes whatever you enjoy and will take your mind off things - books, hobbies. TV with good shows/ movies is fine too. But ultimately, you literally need some time outside of the house. Whatever you can do. even if its a break some days of the week to take a 30 min walk outside. More time is even better.

Caregiving is a hard transition from having your own schedule and being able to come and go whenever you feel like it. My mom sleeps in so I always try to get out for a walk in the early morning and clear my head. Because I had previously been working full time I hadn’t developed enough hobbies and struggle with filling the days sometimes too. I have been
trying to be better about reading again and reach out for phone calls with friends and family. There is always some more chores and organizing to be done around the house and I spend time on this site every day for ideas and suggestions too. One day at a time…hang in there

If burnout was "manageable" it wouldn't be burnout. It's something to be prevented, not accepted and managed.

You need to make self-care your #1 priority. As others have suggested, you need to actively look for help: paid or otherwise. Care.com can be a place to start. It should be paid for with your Dad's funds.

As for waiting for family to help you: sometimes family will say, "Let me know if you need any help." and if this happens, be sure to know what to ask for: like a respite visit, funds to pay for a companion aid or groceries/supplies, delivery, etc. ASK FOR SPECIFIC TYPES OF HELP, WHEN YOU NEED IT AND HOW YOU NEED IT TO HAPPEN.

My out-of-town BIL felt bad he couldn't help more (still working FT, lived far away, had his own MIL to care for) so he was happy to provide funds that were spent on him Mom by us, because we suggested this would be a welcomed way for him to help.

For the 1 relative who does make the effort to come, you need to plan this visit in advance and ask her/him to stay longer so you can catch up and get a break. You need "You Time" every single day in order to remain healthy in body, mind and spirit. Caregiving involves a lot of preemptive problem-solving, not waiting for a problem to happen and then struggling to solve it. This forum offers a lot of excellent advice from people who have been there and done that.

I wish you much wisdom as you put effort into your own daily life.

My dad’s hospice agency had a list of caregivers, not direct employees of theirs, but people you could hire independently who they’d worked with and knew to be good. They were CNA’s looking for extra work, each working out their own rate. I hired several to give me a break. Each asked for a reasonable amount and their help was invaluable. Please ask the hospice nurse for a recommendation, don’t wait on others to offer, no one is a mind reader. You need to get out daily. Take a walk outdoors, even in the cold. Notice the nature around you, it can really lift your spirits. Reach out to family and friends, talking about both your struggles but also any other topic to distract from the daily grind. Going this alone is too much, I wish you peace

Consider just leaving for an hour each day and get some exercise. I go for a bike ride, if it's raining or too cold I just walk. And during the rest of the day, I also work full time and take 5 minute breaks to go out to the garage and kick the crap out of the heavy bag. It's the only thing that keeps me sane. That and way too many drinks in the evening, which I do not recommend. Things can and will eventually still happen if you are there 24x7, maybe you are in the bathroom, have your back turned at the wrong moment...

You do get respite care thru Hospice but it may mean Dad going to a NH for 5 days. You should have gotten a booklet outling their services. If the aide comes for an hour, see if she can stay two. They do have volunteers that could come and sit with Dad while u get out. Its been said here that they have to have them.