It will be three years next month since I relocated from another state to care for my 78-year-old brother who had a mental breakdown, along with vascular dementia and now ALZ diagnosis. (My profile says I moved last year, but that was two years ago). I am the only living relative, and my brother has multiple health problems in addition to the dementia.
When I first relocated, I was extremely worried about my brother, and I was in "super-caregiver" mode. To say the last three years have been rough would be a huge understatement. I moved my brother from independent living to assisted living to now 24-hour care. I took him out of one nursing home where he was abused during the Covid lockdown and put him in another. I sweated through the Medicaid application process. I've had arguments with doctors and nurses...and on and on. But I rose heroically to every challenge and pretty much put my life on hold because I felt my brother's needs were more important than mine.
Slowly over time, my supercharged caregiving feelings have diminished, and now I'm pretty sure I have compassion fatigue. It's not that I don't care about my brother, and I still believe I did the right thing to relocate; but, my emotions have shut down, almost as a means of self-preservation. I just can't maintain the high level of emotional caring I started with. I feel now I'm just "going through the motions." I interact less and less with nursing home staff except for emergencies, I visit far less than I used to, and I worry less about my brother's declining quality of life. I've started worrying more about my own.
Of course, the rock and the hard place about compassion fatigue is the guilt that creeps in when I feel like "backing off." But I don't know what else to do. I won't make it through the next three years if I don't change something, but the emotional tug-of-war is so hard.
Has anyone else had to manage this emotional battle? What has worked for others?
I did not do enough for myself during that four years. Find a way to do for yourself, get out with people and enjoy life. Now I am struggling with trying to do that. The sub frigid temps here haven't helped and the coffee shop stays closed on Saturday and Sunday! What the heck are they thinking!
what an excellent question.
it really comes down to:
how much to give to our LOs vs. how much to give to ourselves. it is very, very hard to do both at the same time. often, one's mind will only focus on 1 or the other. that means, if you focus on your LOs, most likely your own life will suffer.
for some bizarre reason, many of us are much, much more willing to help others, than help ourselves. perhaps in some ways, helping oneself takes even more effort: eat right, exercise, etc., etc., etc., etc., a list of endless things one must do, some of which isn't much fun and so we postpone.
it's really very hard to know what's the right balance:
helping others vs. helping oneself.
but as you pointed out OP, you need to change something. you are an AMAZING sister. and i bet, you're an AMAZING friend, too. now be AMAZING to yourself.
hug!!!!!
bundle of joy :)
When my brother fell ill I remember standing outside his last home (before its sale) and thinking "If you REALLY cared for this man who has been everything to you for your entire life, you would give up your partner, move here, and care for him while he descends from being himself on this long and awful journey through Lewy's Dementia. I think I barely got the thought out from my mind before I knew my limitations in a big way. I was not capable of that.
What I was capable of was to be his POA and Trustee of Trust, help him find a good ALF, help him sell his last home, support him and visit and talk with him about our hopes, our fears, our wishes. HIS fervent wish was that he die before he descend out of his own mind; we both suffer from extreme control; it would have been a misery for him. We agreed we had no choice. We agreed to get through it the best we can.
And now, three years almost after his death, I can admit I am happy he died (sepsis) before he had to lose himself, and be lost to me.
For that is what has happened to you. The one you love is gone. And still it takes/he takes all your thoughts and fears and worries. All your limitations and humanity and inadequacies. All of everything you have and TO NO AVAIL. For in all of this your sacrifices cannot return him to you, cannot restore him to himself.
I honestly think that you are now realizing the limitations. They are real. This is awful, terrible to witness and you witness it every single day. With all the pride you must feel (SHOULD FEEL) for all you have done, you could not save your brother from this, and this is like a living death.
It's grief you feel. It is the most PROFOUND grief and hopelessness, in my humble opinion. If you need grief counseling I would suggest a Licensed Social Worker in private counseling practice because they are the best at life transitions.
And from the bottom of my heart, from any soul I might have, everything in me goes out to you. I once was a loving sister as well. I still am. And I thank whatever gods may be that my brother didn't have to go here, and that I didn't have to witness it. I cannot even begin to imagine this kind of loss.
You have nothing to feel guilty about. Yours is called irrational guilt. However, you are very much *grieving* your brother in real time as he declines.
Meanwhile, my husband, who was supportive of my caring for my parents but wasn't hands-on in terms of helping, is trotting around doing Meals on Wheels and working in a food bank and telling me I'd be happier if I did the same.
I'd rather stick pins in my eyes. 😣
Please know that you have been an incredible advocate for your brother. You also have a responsibility to protect yourself.
It looks like you have done all that you can. Wishing you peace as you heal from the overwhelming responsibilities of caregiving. Take time for you now. You have earned time off to rest.
I went into caregiving a year later, but I only did it for the weekends since I had a full time job that kept me balanced. I went into caregiving full time and I hated every minute of it. I had a horrible person to take care of. Nothing was ever right and finally I had enough of the abuse and left the case. I had been out of work for over a year, and if I had more savings I wouldn't go back now. I don't feel the same after that incident. I think for anybody, this caregiver compassion wears thin on all of us and it is replaced by a numbness that is caused by self-preservation. The body and mind has a way of protecting itself and it shuts down. It is not evil or bad. It is self-preservation.
It's time to start doing things for YOU to help offset the fatigue and burnout that resulted from caregiving!
We did something we shouldn’t have.
We didn’t do something we should have.
We didn’t do enough for someone.
We THOUGHT we should have done more.
Etc., etc.
Being obligated makes you feel that you are compelled to do something… you have no choice. But you can feel responsible for someone’s care w/o feeling obligated. Look back and see all the decisions you’ve made for your brother; all the sacrifices to your own life and all the responsibility for his care you took on. You did the best and are still doing the best you can for him. So forgive yourself (as though it’s that easy to do) and continue your therapy. Try to re-establish the lifestyle you gave up and realize what you are doing now for your brother is enough.
I had to respond to your post as I along with my children were completely exhausted when my husband passed. I believe now that we are experiencing PTSD as we move forward without him.
Our new normal was always changing, we were always on high alert as we never knew what the day would bring. I too, found myself going through the motions and feeling resentful, as I felt my own physical and mental health decline, (despite running every morning).
Unfortunately, I don't have any answers, except to say that I understand what you are going through. I do think you need to move on with your life.
All of your responses are so on the mark. It's start out one way and with these long-term progressive illnesses it's like running a Marathon.
You have to have a "Happy Place". I bursted out laughing with the respondent who quoted her husband about the Meals on Wheels, she said she rather put pins in her eyes.
It made me think everything that all of us have to do--the "list" when baby sister calls and says, "so, did you do anything today?" I just respond, "ah nothing".
By the way, Baby Sis is on a cruise right now, I am not supposed to know--Mom let it slip out.
This beast of a disease "Lewy Body" I have done everything in my power to "halt the symptoms" or as Teepa Snow would say, "down boy, down". I run my place with military precision. If I didn't the deck of cards would fall.
I, too, wonder, how is this going to end. There must be a reason for the saying, "take one day at time". Unless one has done it, advice is never really appreciated unless they have been in the trenches.
The Pandemic really has had a lot to do with everything and we are still all recovering from it and now it is flu season.
I guess we all have to stop and think, when this is all over, you have to still be standing, in one piece. How do you do that--maintain your weight, exercise, keep an eye on your finances, keep ties to your friends as best as you can, Church as well, and some type of paid employment, a lot of places are hiring online. Library--be well read, fresh air daily, walk or swim, pray, give away whatever you are not using, get your hair done, don't watch anything negative on tv, control what you watch on Netflix, buy yourself some flowers and nice dark chocolate bar. Put a penny in the a vase of tulips and they will stay upright--this really works!
Amen...
No, it absolutely does NOT have to be her life over your own? Would she do the same for you? Clearly not, as she won’t make any of the changes needed to improve her own life which would in kind improve yours.
Be honest with yourself about how much you can do or give.
Otherwise, you're going down with the ship.
I can relate. Sending love.
You should join the Alzheimer's Dementia Caregiver's FB Support Group. You can vent there without judgment. That's how you keep your sanity.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share&mibextid=NSMWBT
You have the ability to shift into the next higher gear, but the transition between 1st gear and 2nd gear is letting go of somethings and grabbing on to others, and I mean letting go of whatever holds you back from going into 2nd gear, not letting go of your brother. In fact, properly shifted into 2nd gear, you will have more success with your brother than you did in 1st gear, even if he's in a worse condition.
But mostly, if you can control his demise from dementia, that will help you tremendously. One of the biggest things that fights the brain is inflammation. Inflammation in the brain doubles the load on an ALZ patient. The brain is a renewable resource, so when it suffers a concusion, that's a blow that leaves black marks on the rest of the body, and in the brain it leaves its marks, too. You can't see it. But the brain recovers from concusions because the brain is a renewal resource.
Without analyzing your brother, whom I don't really know enough about him, I can at least tell you that I have turned around my Alz patients by adding 325 MG total a day split into three equal smaller doses every 8 hours (using liquid acetaminophen it's easy to calculate and put in a drink they like or Pedialyte). Tylenol, aka acetaminophen, is the ONLY NSAID that crosses the blood-brain barrier to pass into the brain. Aspirin won't. Ibuprofen won't. Naproxene won't. Advil won't. No other OTC pain reliever will. But it is important not to be lazy and give one large dose because it can be hard on the liver, so you want to spread it out so that at no time there is a large amount of it weighing on the liver. Okay?
Why give Tylenol liquid? Why fiight inflammation? Because think about it, the person has a condition in their brain called AD, ALZ. Alzheimer's Dementia or Alzheimer's. Their brain is trying to fight that disease the best it can. But the poor dear is not able to keep up because there is serious inflammation going on in the brain as well, so the body must fight inflammation as well. Now the brain is fighting on two fronts against two terrible conditions. It's overworked like you are. It's trying to empty out the seawater froma lifeboat on the sea, but the hole is too big and too much water is coming in. What to do?!! Patch the hole. Tylenol, reducing the inflammation, is a type of patching the hole and keeps all that seawater (Inflammation) out, so the brain can focus its healing powers that heal terrible concussions on healing the ALZ condition.
I have seen turnarounds at the end of their 7th day, their 14th day, and their 21st day of 325MG acetaminophen a day and have been able to reduce their Aricept after 3 weeks by 1/3rd with no adverse effects. Sundowning reversed. Irritability and anxiousness reversed and normalized. And I did this first on my favorite patient of all time, my mother, at 95. I still have all the meds I saved stored for when I speak on the topic. 6 month supply of Aricept 23MG because I cut her down by 1/3rd for 18 months with no adverse effects. And reduced her Lorazepam aka Ativan from 4.5 MG daily to 1MG daily over 18 months. And it started because on the 21st day she was so improved that I removed her third dosage for good, after removing it the 7th, 14th and 21st days seeing improvement and no ill effects.
Dr. Cristo Calle in San Antonio honored me for my work with her. He gave 100 patients five year till they would die, by 2009. In 2009 she and I were called in and he stated all 100 died but mother, and after researching all patient files it was determined I was the reason. Nobody had a caregiver like me. I was there for her. She w/me.
Tylenol is one of the most researched OTC in the world, for over 50 years researched in depth. Some say it is not an NSAID, some say it is, and nobody knows everything it can do. I am well versed in controlling variables for clinical trials to eliminate any confounding factors. When I introduced acetaminophen the very first time, that person had no other changes to anything going on. No changes to medicines, foods, routines, drinks, socialization, or anything. Physical and social were all the same. There was no introduction of any new herbs or vitamins to confound the results. And no changes had been made in months, eliminating every possibility that something else was causing the positive or negative results.
There are other things that can be done to test results, such as removing one dosage after a period of time. Why would you remove medicine from a patient? Well, it sounds worse than it is. It's sounds terrible at first glance, right? Of course, nurses do it all the time, every day, when any patient REFUSES meds, they just write it down on the chart, Meds Refused. And when they refuse them, that's when adverse events can happen. And be noted down. I did that for my patients. And this time I want it to be refused because I want to see if the same things happen when she doesn't take that Aricept, Namenda, Lorazepam, that in the middle of the night will she want to go all over the house after a bathroom run, or in the morning, after missing her doses, will she get very irritable and problematic through the afternoon? So it was by allowing her to refuse, and not talking her into taking the meds at late night, that I was able to see for the first time normal behavior and that NO ADVERSE events happened, and they ALWAYS HAPPENED before. Without fail. And thus, after three weeks, with 3 tests on each 7th day, after she passed with flying colors to return to bed after peeing at 3am, and after she got up and acted normally and not irritable or feisty or uncontrollable, that is when, after the 3rd time, that I said, The only change I made was adding 500 MG of acetaminophen into her daily routing, but on the 7th, 14th and 21st days she only got 2/3rds of 500 MG, which is about 325MG, and had ZERO adverse events, so from now on, she gets 2/3rds of her Aricept and Lorazepam until further notice, until some evidence of an adverse event. And the rest is history.
Mother lived not only to 2009 because of my care, always taking her out every day to go eat, always taking her to her church, to my Lions meetings, to whever I went, she went and wherever she went I went. She was a walking history professor of things past you couldn't get at Harvard. She could still write songs, and write tunes just like she did in country music. I don't regret a bit of the sacrifice I made to be her constant companion and assistant and devoted son. Not for a minute.
But beware, such devotion is looked down on by the mainstream hospitals and nursing homes because they don't see it. It's not the normal thing. Dr. Calle said nobody among the 100 patients that died by 2009 had someone to care for them like I cared for mom. Nobody took them out every day. I was it. They researched our social life in SE San Antonio, and found I took her everywhere I went, even to HEB and Walmart and I let her drive an electric cart. She first learned in 2012-2014 in Alabama where we went to live on the coast in Orange Beach in condos. What a blast we had. Since I was able to explain her behavior and get her to take meds unlike the hospital staff, and I stayed with her in her room when she had deadly CDIF, they thought I was a crazy pervert. They jumped to conclusions. I will make them pay. It is why I study the Law every day.
That can put you at risk for compassion fatigue.
Compassion fatigue can be a side effect of caring for someone in need. It causes physical and emotional exhaustion and reduces the ability to empathize.
It’s common in doctors, nurses, and other health professionals and is called secondary traumatic stress. You basically get stressed from continually helping or wanting to help others who are suffering.
MATILDA
If it’s not managed, compassion fatigue significantly worsens your health and well-being.
It also reduces your ability to care for your older adult. You can’t be engaged, warm, and caring because you just don’t have it in you anymore.
To protect yourself, it’s essential to learn good self-care strategies and coping techniques.
Months after my mom died, my sister started showing signs of cognitive impairment. She had probably been struggling for a while, but her friends called to tell me she just wasn’t behaving like herself. I became her DPOA and tried to support from a distance, mainly keeping her out of financial trouble, then hiring caregivers as companions, since she denied any problems. Her sons are in their 30’s and I have taken the lead so they can live their lives. Now, my 38 yr old nephew has settled with his new wife in Manhattan and we have moved my 74 yr old sister to MC in Westchester Cty. And I have resigned as DPOA.
My other 72 yr old sister also has dementia but is well cared for by her husband and family.
Since January 2020, I have been assisting people who choose medical aid in dying. I know, I know. It sounds masochistic. But it suits me well and I love the opportunity to help. About four months ago, I noticed that my manner of supporting clients and their families had become more businesslike and pragmatic. Not a huge change, but I noticed I was feeling different about the work. And our client numbers have increased by a third since I began and I have just tried to take care of everyone.
All of this to say that I am finally recognizing that I am swamped by the grief of watching my closest family disappear incrementally, plus trying to process a death or two each month. I have taken a temporary step back from the volunteering to try to recover but I am not finding the compassion in my heart that I have always felt. Or maybe the word is empathy.
I have found great purpose in caregiving and am now wondering where to find purpose as I continue in retirement. And should that temporary break from volunteering with end of life support become permanent?
Luckily, my husband supports my no longer working because of this and we have some resources, but at 57 now, I sometimes wish I could do something else. I worked professionally full and part time for a long time, but each time I think I might get a p/t job again, a crisis happens with one of them.
I am trying to reconcile the fact that this is what I am supposed to be doing. Sometimes I feel blessed that I am able to do this for them (with outside aides), and sometimes I just want to run away and never hear their problems or "when are you coming to visit?"cries again.
It's a real thing- compassion fatigue. Know it, own it, give yourself breaks/vacations from it (even if it's literally turning off the phone and laptop for one day). Also know, you're truly appreciated.
When I've taken an inventory of all of the experiences, trips. vacations, occasions, job, freedom that I've foregone to care for my mother it makes me sick to my stomach and then the resentment flares up.
It's been a huge struggle for me to deal with being a prisoner in my own home.
I began to suffer from compassion fatigue about 2 years ago and it's been up and down ever since. I pray a lot and that's the only thing that gets me through.
Tomorrow is shower day and I'd rather take a beating than go through it, but it must be done. That's where I'm at.
I had to fight for coverage ( to go to my home) when my youngest daughter needed me as she faced breast biopsy. I still had to drive over to her house to make sure she was in bed, had her meds and doors locked till her son got off work. She is totally stubborn, set in her ways, manipulative, passive aggressive and a chameleon in her emotions ( nice to visitors and pouty and oppositional behavior with me with rare thank you or smile)