The Black Hole of Despair

I haven't been around on the net lately due to the fact that I have been trying to recover from pneumonia, sepsis, C.O.P.D. , and a breakdown that sent me deep into despair. I have two Doctors who kept trying their best to keep me from caregiver burnout. Unfortunately after almost 16 years of caregiving, first for my Mom and now my brother, the toll on the body and mind of this 68 year old woman became too much.

As much as I love him Reid is a most difficult and noncompliant patient. His neglect of his leg caused him to lose it. If he had let me know from the first he has some bad sores there I could have gotten him to the Doctor and it wouldn't have turned gangrenous and ended in an above the knee amputation. He gets clingy and needy and won't do things for himself. I can't force him to do his exercises. I can't force him to put on the artificial leg and try to walk again.

In June the stress got so bad that I collapsed and had to be rushed to the hospital. They weren't sure what it was so just labeled it a seizure. It wasn't. My mind and body had overloaded with stress and I ended face down on the floor trying to get air in my lungs. In July I ended up in the hospital with pneumonia, sepsis, and C.O.P.D. I was there for 5 days. I still don't have my energy back.

A couple months ago I finally lost all of the control I had been trying so hard to keep together and it ended in a screaming match. I reminded him if it weren't for me he would be dead. If it weren't for me he would still be in the closet. I couldn't take it any more with his noncompliance and seeing nothing but day in and day out caring for him for years. No future for me just a caregiving for the rest of my life. I told him I wished I had died at the hospital and meant it.

My Doctor has me on double strength stress tablets and antidepressants. I am slowly climbing out of the black hole of despair. Some days are better than others. It finally got through Reid's thick skull that he is going to have to do his part so that we can get out of here and do something.

I want to thank Ojibwa for covering for me in Street Prophets. My current plans are to get back to writing Coffee Hours on December 1st.

Nightmare.JPG

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riverlover's picture

Caregiving for a non-compliant is a huge burden, as you discovered? But what will you do if he keeps pushing the limits? I am so sorry, for you both, but especially you. Take it easy, years of caregiving will take more than a few months to bounce back from.

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thanatokephaloides's picture

Kind and loving vibes sent your way! {{{{ Smile }}}}

And I thought *I* had grief with mere computer problems!

What else can I say? Again, take care of yourself and be good to yourself! We appreciate what you do for us hereabouts!

Give rose

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"US govt/military = bad. Russian govt/military = bad. Any politician wanting power = bad. Anyone wielding power = bad." --Shahryar

"All power corrupts absolutely!" -- thanatokephaloides

Granma's picture

I hope you'll be able to think of many ways to coddle and be kind to yourself. Sending healing thoughts to you and prayers for you.

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Steven D's picture

Please take care of yourself. I wish I had more to offer.

Steve

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

and it is incredibly difficult to be a caretaker. I'm lucky, though, my Dad is highly motivated to exercise. He almost died in August with a reaction similar to sepsis.

Strength and blessings to you.

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dfarrah

Pricknick's picture

a blessing and burden.
If you don't love and take care of yourself, caring for others is impossible.
As an RN, I thought i was immune to the stress of caring for a loved one. I learned the hard way.
The writing will help you as the reestablishment of my connection to nature has helped me. Never give up.
Best of luck to you and yours.

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Regardless of the path in life I chose, I realize it's always forward, never straight.

Wish I could help. Are there any alternative care establishments that can take Reid? Is he eligible for medicaid or any insurance that will fund professional care? Has he been diagnosed as terminal? If so, Hospice does wonders to relieve caregiver stress.

Who took care of Reid while you were in the hospital?

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michelewln's picture

We are caught in the middle since I have access to his SSD to pay his medical bills we can't get help even though if we were only on my income we could.

My niece and her husband and children help as much as they can.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

michelewln's picture

We are caught in the middle since I have access to his SSD to pay his medical bills we can't get help even though if we were only on my income we could.

My niece and her husband and children help as much as they can.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

riverlover's picture

Or have you entertwined assets enough that you need his SSD, too? You don't have to answer. And my sense now is getting even a Medicare bed (quotas, etc) can be hard and they only pay for 4 months (?) before Medicaid gets involved. As long as he is asset-stripped and they can't come after you. May want to talk to a lawyer, your Dr or someone in that office may know the routes.

I know it's all painful. Again, sorry. At some point you must come first. Hugs, fellow expat-Hoosier.

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PriceRip's picture

          when stepping back from the abyss. And, if there is no other about I talk to myself, and, yes, I do answer. Quite interesting conversations, if I do say so myself.

I have two Doctors who kept trying their best to keep me from caregiver burnout.

          This is absolutely none of my business so tell me to "shove it" if you wish as I do not know you nor do you know me. But here goes: You need to find an exit strategy. I am working with my family members to see if we can effect just such a maneuver. But we are (or, as in my case, soon will be) in Oregon and have options that may not be available elsewhere.

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enhydra lutris's picture

That's about the best I can do, as I lack any meaningful advice to give and am in no position to give any anyway.

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That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --

featheredsprite's picture

where you can no longer take care of Reid. This happens in lots of caretaker situations.

When you're ready to do something about the situation, go to your primary doctor and tell him/her everything. Ask for help in finding some other situation for Reid. Doctors know about resources.

You're killing yourself, girl. You may have to make a decision: Die or turn loose.

Hard decision to make, I know. Good luck and go forth with courage. We are thinking about you.

[[hugs]]

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Life is strong. I'm weak, but Life is strong.

Carol Joy's picture

Sense. You have stated clearly that this situation is more than a burden - it has put you in a deep and dangerous place where you wish you had died back when you were in crisis in the hospital.

Call social services and insist on getting help. Or make a doctor appointment and press them for help finding a solution.

Clearly you love your brother, but your body is more than telling you that this lifestyle is TOXIC. It might seem to you that you are harsh, or unChristian, or selfish, to move to make a change. But it is clear that you cannot keep on keeping on. And how much good will you do Reid if you are dead?

I have done elder care for almost 20 years. And I know from watching good people care too much for too long, that when a move into a healthy lifestyle is being insisted on by the body's own mechanisms, that the body needs to be obeyed.

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Believing in the improbable can make your life a miracle.

mhagle's picture

I know I couldn't do it.

Long time ago a friend of mine (who had issues with depression) said . . . "we only have so much collective time and energy. There is only so much time. When you add up your physical energy and your emotional energy, there is a finite limit to it." (paraphrased)

We have been so influenced in our culture by "the sky is the limit" nonsense. Or, "you can do whatever you put your mind to." There is a minuscule bit of truth to will-power, but mostly, those ideas are false. We have real limits. And that's OK.

You are such a gifted artist. And your sacrificial love for your family is amazing. My hope and prayer for you is that the pendulum will swing back in your direction for your healing and strength.

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Marilyn

"Make dirt, not war." eyo

"go ahead, make my day," from Sudden Impact, my preferred Harry Callahan line is from Magnum Force: "A man's got to know his limitations."

there are days when i weary of merely having to care about various persons in my immediate sphere, never mind having to care for them.

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The earth is a multibillion-year-old sphere.
The Nazis killed millions of Jews.
On 9/11/01 a Boeing 757 (AA77) flew into the Pentagon.
AGCC is happening.
If you cannot accept these facts, I cannot fake an interest in any of your opinions.

hurts both of you.

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sojourns's picture

it's time to limit how much you care for him. Leave him in his own room with nothing but a tv set and a raccoon for company and perhaps his leg. At feeding time, slide protein and a multi-vitamin under the door. He may begin to appreciate all that you have done for him.

Above all, as everyone else has said, take GOOD care of yourself; mentally and physically.

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"I can't understand why people are frightened of new ideas. I'm frightened of the old ones."
John Cage

studentofearth's picture

It is not uncommon to think our professional training gives us super human powers. We forget most of the time we are practicing our professions we have co-workers, regular shifts, time off with family & friends and policies & procedures to follow. One on one care-giving, such as you are providing is very isolating. No one is watching out for you, you need to make every decision with little to no input and do all the physical activity 24/7.

Reed and yourself are different individuals than the ones who started this journey. His option for living independently disappeared as his physical status became more compromised. It is not uncommon for someone with the difficult to stabilize diabetes, you have described, to have mental changes as time goes by due to both excessive high and low blood sugars. The physical burden of caring for him has changed. Your physical and mental health have changed. It is not unreasonable or unloving to reassess the best options periodically.

The last two rounds of 24/7 care giving I relied on Qi Gong. I could do it at home following a youtube video or attend a class just to be around people. It gave me a little exercise, but the mental help was much more profound. I recommended a Ken Cohen youtube series as an introduction.

Reed received respite care while you were in the hospital at least 2 times now. Are those options available to use periodically? Most doctor's offices are aware of resources available in the community. They tend to save that information until there is no other option. Let then know you are at the end of your rope and see what pops up. Is it possible for a care facility to manage Reed's SSD to separate it from your income?

I have used in-home care, foster homes, assisted living and nursing home for relatives where care-giving required greater physical/mental effort than I could provide. It allowed me to focus my energies to visit regularly, follow-up on any care issues and have quality interaction with my Grandmother and Aunt. They actually improved when I was able to spend quality time with them vs arguing about care issues.

A facility that meets your needs may have a waiting list. If you start the process now, you do not have to take action when a space opens up.

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Still yourself, deep water can absorb many disturbances with minimal reaction.
--When the opening appears release yourself.

Thinking of you. Hoping for better days.

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Bollox Ref's picture

Hopefully things will improve so that you can post photos again.

Cheers.

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Gëzuar!!
from a reasonably stable genius.

LeChienHarry's picture

care giving, us three siblings knew that one of us was not enough. We had the support and care of our spouses as well. One person simply cannot do this alone. At best it takes three adults for one impaired adult, based on what we experienced.

If you become so impaired or worse, die, what happens to Reid? That is the question for your medical professionals. I'd say somehow you need to prove that he needs to be out from under your roof.

You have done more than enough, and maybe will need your own caregiving, sooner than later.

I agree that time alone, simple meditation, stretching, a good diet all may help. But you also need real people, your passions, maybe a furball of some kind, and I'll make a pitch to get outside to the woods or forest near you if possible. You not only need a respite but restoration.

Best wishes, good health, and happiness to you. You really deserve it.

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You may choose to look the other way, but you can never say again you did not know. ~ William Wiberforce

If you can donate, please! POP Money is available for bank-to-bank transfers. Email JtC to make a monthly donation.

Are you a smoker?

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"Politics is the art of looking for trouble, finding it everywhere, diagnosing it incorrectly and applying the wrong remedies." - Groucho

riverlover's picture

because she did not have time for herself.

And please don't go "smoking did it?". I have had MDs explain multiple cancers in my father from earlier years of smoking. He quit the day the Surgeon General's report came out. Lung cancer he missed out on. Why it's necessary to guilt out a patient for acts of the past? What does that accomplish?

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

Even if it's as small as "Maybe you should think about not smoking" if she is still smoking. Pnemonia can cause sepsis so that may be it. I don't know. I'm not the kind to keep quiet. But I have noticed that the small poll I have taken with the bleeding heart liberals on this site has determined that an overwhelming majority voted for "abandon the disabled brother so you can look after you own needs." Not so bleeding heart.

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"Politics is the art of looking for trouble, finding it everywhere, diagnosing it incorrectly and applying the wrong remedies." - Groucho

Cachola's picture

Looks like more judgmental crap to me. Is this your specialty, finding people at the limit of their endurance and piling guilt and judgment on them? (You know this is not the first time you do this.)

As for insulting the other people, think about this: how can michelewin help her brother if she in the hospital or even worse? Who is going to help her? I bet you would have another lecture ready.

Ed to correctly spell michelewin's name.

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Mundus vult decipi, ergo decipiatur.

elenacarlena's picture

then she needs to set limits before she has no health left at all to care for him in any way whatsoever. Sheesh.

You either have never been a sole longterm caregiver or have the stamina of Superman.

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Deja's picture

And because he is the opposite of a "bleeding heart liberal", he thinks it's her place, her duty, to serve him. And, I'm betting he'd be totally pissed if she fell ill and wasn't able to cater to his every whim, asking her what she did to give herself the illness.

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michelewln's picture

I was born early and have had weak lungs all my life. I am allergic to smoke and when Reid first came I made him go outside to smoke. Eventually he finally quit.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

elenacarlena's picture

to jacka$$e$.

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PriceRip's picture

          If you ever bother to talk with an oncologist (or a physicist) they are able to explain how cancer is not really a disease per se. That is cancer cells are generated "all the time" in your body. You usually "get" cancer when the "cleanup crew" fails to function properly. Certainly there are processes that "generate" cancer occur because of external influences like viruses, components of tobacco, et cetera. But it is important to understand that cancer happens, even to the most diligent of us. I have spent a lot of time doing Experimental Nuclear Physics, the fact that I have cancer however is not because I have spent a lot of time doing Experimental Nuclear Physics.

          Yes I know all about all the studies. And yes I know how smoking increases the risk of cancer. So don't jump all over me about science this and science that.

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michelewln's picture

I've never smoked. I was born early and have had problems with my lungs all my life. The sepsis was caused by a year long struggle with pneumonia that didn't clear up until I was hospitalized.

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A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world. Oscar Wilde

Exercise. Everyday. Like was already suggested , go for a walk in the woods or if you can't do that just walk wherever you can. Hopefully you'll be able to stop taking the medication. Doctors today NEVER prescribe anything but meds. It's a national crisis. Eat as much natural food as possible. Check out the Paleo diet. It's a good place to start.

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"Politics is the art of looking for trouble, finding it everywhere, diagnosing it incorrectly and applying the wrong remedies." - Groucho

Phoebe Loosinhouse's picture

I think you've been a champ, but it sounds like your brother's medical care has advanced to a state that is beyond your ability and endurance - I echo the people who encourage you to accept this fact and then proceed from there in attempting to discover a long term solution for your brother. What would happen to him if you weren't in the picture? I would suggest taking that as your starting point and trying to get him admitted into some kind of long term care facility. Very sad situation. At some point all families hit the wall with this.

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" “Human kindness has never weakened the stamina or softened the fiber of a free people. A nation does not have to be cruel to be tough.” FDR "

hester's picture

As you know, I had been through caregiving w my mom for many many years. She had ALZ as you may remember, and became very compliant. That was the easy part. The physical challenges were something else altogether.

You did the right thing w Reid. You cannot care for him if he doesn't keep his part of the bargain. I wonder if part of the depression was your giving in to him for so long and now you are standing your ground and insisting he do his part.. Good for you and just exactly right. Maybe that's letting some light into your life.... a modicum of control and insistence on a cooperative 'team effort'. He's lucky to have to.

Stay strong. You are doing a great job. And congrats on reading him the riot act.
Cyberhugs streaming your way

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Don't believe everything you think.

gulfgal98's picture

with my mother who cared for my father at home for nearly nine years during his twelve year battle with Alzheimer's. She was in her eighties and it took a heavy toll on her physically and mentally. After he died, it took her about one year to completely recover and regain her health. My sister and I tried to get her help (neither of us lived nearby) but she was afraid that she would not be doing enough herself. Eventually, she was able to see she could not care for him alone.

Every caregiver needs some personal time and a chance to recharge. It appears that every bit of your physical and emotional energy has been spent on your brother. Like everyone else here, I hope that you can find the right combination of outside help in caring for your brother. Also it appears that he should take charge of some of his own care if he is mentally alert. Perhaps your doctor or his doctor needs to intervene to help you get the relief you need so badly.

I hope that a measure of peace will find its way into your life and give you your life back. Thinking of you and hoping that there will be a solution to this soon. You deserve more than just caregiver burnout. Bless you. (((gentle hugs)))

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Do I hear the sound of guillotines being constructed?

“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy

I agree with the advice given to you to focus on your health and recovery, first. The amazing thing is this is best for your brother as well. He either will or won't/can't start to help himself better. I have sat and listened to so many families tell me that they cannot allow their family member to go to an assisted living facility or nursing home because they promised it would never come to that. We can never know the costs of full time caregiving over the long haul before we actually walk that path. This is a difficult juncture but gather your supports. Maybe his doctors can hook you up with resource to support you. Others asked about Medicaid eligibility. If he is over 65 years of age, would he qualify for services through the local Area Agency on Aging? A caseworker can conduct an assessment. Does he qualify for SSDI? I have seen relationships and the health of both the caregiver and the family member needing care improve once assisted living or nursing home placement has occurred. The quality of your relationship with your brother would shift if you were not the primary one negotiating with him about his daily care. You could focus on engaging in more enjoyable activities and loving each other, perhaps even supporting each other to become as healthy as possible. You need to take care of yourself. Your body has given you the most powerful messages. Please listen. And take care.

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Carol Joy's picture

Social services is that they can come up with resources that exist for seniors in your area that you are unaware of. Also, depending on what state you live in, there can be expenses relating to your brother's care that would be subtracted out of your joint incomes and then he might get certain benefits. (Or since you've recently been hospitalized, med and related expenses might be subtracted out of your income. And then you might be eligible for benefits.)

Scheduling a doctor's appointment might be good, as she or he can help you realize your need to start establishing a healthier living arrangement for yourself.

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Believing in the improbable can make your life a miracle.