November 20, 2017

Open Mic: Calling all caregivers

Reflection in Blue, Bonnier

Reflection in Blue, Bonnier

Note from CMThank you all so much for sharing your stories and experiences. As thankless as it may seem some time, caregivers are doing God’s work, the “cup of water” work that Jesus assures us our Father sees and rewards.

• • •

Calling all caregivers!

I am currently working on the third book in a series of three related to end of life matters.

This third one is directed toward caregivers, especially those who are caring for the elderly and terminally ill. That might mean medical professionals, particularly nurses and CNAs, but certainly includes family members, guardians, and friends who have devoted their lives to providing care and support to loved ones in the final season of life.

I want it to be helpful, hopeful, and encouraging because these are some of the hardest-working, least understood and appreciated people in the world.

In my work as a hospice chaplain, our team always stresses that we are there to support the family as well as the patient, and I’m hoping this small book will be something we can put in their hands to help them.

Today, I solicit your input on this subject.

I would like to hear from anyone and everyone who has experience in a caregiving setting. Here are a few questions you might consider (don’t feel like you have to answer them explicitly, they are here to prime the pump).

  • Tell me the basic parameters of your situation(s). No need to compromise anyone’s privacy here — just outline the situation for me.
  • I want to know about the personal challenges that have been most profound for you, lessons you have learned, mistakes you have made, and things that went well.
  • I’d like to hear how you have been helped by your faith and faith community. If your faith community has let you down, relied on cliches rather than true support, or simply hasn’t been available when you need them, I’d like to hear that too (again, no need to share names and exact details).
  • What faith resources have been most nurturing to you, giving you strength and perspective? Are there particular scriptures, prayers, or practices that sustain you?
  • What “natural” resources have helped you to remain healthy as you give care (e.g. humor, rest, diet and exercise, delegating, etc.)?
  • What are some of the most helpful things others have done that made your caregiving experience better?
  • What are some of the most unhelpful things others have said or done that have made your caregiving experience worse?
  • Where do you see Jesus and the gospel in the midst of your caregiving experience?

Thanks so much for participating.

The Messiah . . . is sitting among the poor, binding his [own] wounds one at a time, waiting for the moment when he will be needed. So it is too with the minister. Since it is his task to make visible the first vestiges of liberation for others, he must bind his own wounds carefully in anticipation of the moment when he will be needed. He is called to be the wounded healer, the one who must look after his own wounds but at the same time be prepared to heal the wounds of others.

• Henri Nouwen
The Wounded Healer

Comments

  1. My Dad has Parkinson’s. My mom is his primary caregiver. My job is to be a caregiver to my mom. I check in and do things around the house that need fixing, do some food shopping occasionally and stay with my dad for a few hours so that she can get away with my wife for lunch and maybe a little shopping. It’s not much but it’s critical for her mental state to know she’s not alone. She can feel desperate at times.

    • Care-giving is really hard on the care-giver. I commend your care-giving to your mom, who needs it as much as your dad.

  2. Adam Tauno Williams says:

    My most recent end-of-life experience was with a parent, it was thankfully [sort of], a relatively brief / quick process; about six months. A rapid descent to death for someone who was a model of physical fitness; an process which blindsided everyone.

    In light of my own experience I will in future situations- and I will likely specify regarding my own death – avoid ‘religious people’ to the largest extent possible. The great majority of them cannot hear what you say, they are completely enraptured by their own narrative, and do little other than spout random pithies. I felt that the church to which my parent dedicated a significant amount of time and energy was nakedly disrespectful of who they were. Death integrated into their agenda.

    This experience was a significant mile-stone for me. It is when I turned from one of the throng of people who smile and try to shrug off the disgusting condescension with which pastors and their troops approach those in grief or pain. I now respond with a roar. Honestly is preferable, even if it is hostile.

    What helps? Exercise; in my Evangelical years I would have written that off. But it helps, it helps pretty much everything. Life is better, everything is easier, now that I weigh less, drive less, and am more active. Just sitting in a chair is more comfortable. Being actually in space verses driving through it makes the world a larger, more interesting, and more beautiful place. I notice changes more, buildings going up down, the lawns that have children toys, someone painting their house, etc… And I can stop and admire some of the beautiful things which just randomly happen or appear.

    What helps? Community. I am involved, things are always moving. Not just work, which can be frustrating, but affiliations I have chosen. People I respect, projects I care about – they are waiting for me, I am a part. This forces me to get out of my head and to be present, focus on things that move forward, that are about the future. This is no small thing when the hungry abyss of the past is stalking you. Christianeese people like to talk about being “set apart” “not of the world”, etc… – that is complete nonsense, the worst of all possible advice; we are in the world, and upon it lies the path we must walk.

    • Thanks for this, Adam

    • Thanks Adam; this post was helpful to me. Tag: I’m ‘it’.

    • What helps? Exercise;

      I officially weigh less now than I did for the majority of my 20s and all of my college years. I’m in the best shape of my life possibly, if not the last 5-8 years. And I’m doing it slowly, while strength training, so no loose skin or anything.

      It’s changing my life.

      And the greatest catalyst to helping me do this was quitting church and focusing on myself. So much less noise, so much easier to focus. More heavy things to pick up and move.

    • What helps? Exercise; in my Evangelical years I would have written that off. But it helps, it helps pretty much everything. Life is better, everything is easier, now that I weigh less, drive less, and am more active. Just sitting in a chair is more comfortable. Being actually in space verses driving through it makes the world a larger, more interesting, and more beautiful place. I notice changes more, buildings going up down, the lawns that have children toys, someone painting their house, etc… And I can stop and admire some of the beautiful things which just randomly happen or appear.

      Actually I can probably say amen and agree to all this. It’s my experience as well.

      Although the evenings are a little bit more spaced out depending on workout intensity, lol.

    • Adam TW said,

      “In light of my own experience I will in future situations- and I will likely specify regarding my own death – avoid ‘religious people’ to the largest extent possible. The great majority of them cannot hear what you say, they are completely enraptured by their own narrative, and do little other than spout random pithies. .”

      I want to second and third this. I wrote about my experience lower on this page (it’s sitting in moderation right now).

      The majority of Christians are among the very worst people to go through with any hardship, whether it’s you are acting as a care taker, or your loved one died.

      A few of my online friends, who are Wiccan, atheist, or lukewarm/backslidden Christians were, ironically, way more compassionate and supportive of me after my mother died than Christians were. However, these friends were long distance and not always available if I needed to share with them.

      Christians would rather ignore you or else shame you or quote Bible verses or religious platitudes at you if you are hurting than to do the hard work it takes to help a hurting person recover – invest time by sitting with you an hour a month or whatever to put an arm around you, let your talk things out, etc.

  3. Steve Newell says:

    How many people can say that their pastors help both those providing care and those receiving care at the end of life? I am fortunate that my pastor visits both these people. He shares how with members who suffer from various late stage mental issues like dementia and all its forms. They can remember hymns, psalms, the creeds, and Lord’s Prayer with our pastor during his visit. He will read a few passages from the Bible and pray with them.

    When my son was in high school, he could not attend church due to a brain injury. Our pastor came to our home to bring Holy Communion to our family. It meant a lot to us.

    • One of my church’s saints (I say that because he truly is) has lived with MS for 20+ years and was diagnosed with pancreatic cancer a few months back. He’s currently in hospice care and I’m guessing his transition is 2 weeks away.

      A couple weeks back, as I was visiting this person, the subject of communion came up. I texted our pastor to suggest he serve communion the next time he visited. He said it was a good idea, but I don’t know if he ever did. I sure hope so.

      • Christiane says:

        the fact that the dying person desired communion is something God would not ignore . . .

        ‘say but the word and my soul shall be healed’ is a very old prayer in the Church which acknowledges that we are not so far from the care of Our Lord if He hears our heart’s need for Him

        your concern for this dying man is a Christian work of mercy . . . may God give him peace and strength for ‘the transition’

      • When my wife had Hodgkin’s lymphoma, she was told by her physician to avoid crowds during treatment; she had a seriously suppressed immune system. As a result of that, along with our prior alienation from the Episcopal parish we were members of, we did not go to Sunday church services for more than a year. It was a lifeline when the pastor of the local Lutheran church where my wife had previously subbed as organist offered to celebrate Holy Communion with us in our home on several occasions. He wasn’t even our pastor, but he came.

        • Adam Tauno Williams says:

          > He wasn’t even our pastor, but he came.

          This is very encouraging to hear. My experience has made it difficult to imagine such a thing.

        • David Denis says:

          Late to say this, but in reality, in that moment, he most certainly was your pastor.

  4. Michael Bell says:

    When my Father-in-law passed away not that long ago there were no less than six Pastors at the visitation and funeral: His current Pastor and his previous Pastor (from a church that had closed), the Pastor of my church, the Pastor of my sister-in-law’s church, a long with a couple of Pastoral friends.

    People in the church made meals for us and supported us in other ways.

    I left our church a number of months ago. Whatever differences I might have had, Pastoral care was not one of them. Ours was a church that did Pastoral care well, looking out for both the caregiver as well as the person receiving care.

  5. My mom had the long, darkening slide of Alzheimer’s, ending earlier this year. The care-giving was really hard on my dad; I mean, frankly my mom didn’t know how much help she needed and how difficult it was, but my dad, full of his senses and his responsibility toward his wife…well, the care-giving nearly killed him twice. His health only improved when we put my mom in an assisted living facility.

    I’ll try to answer some from your questions from his perspective:

    My mom slide into Alzheimer’s began 10 years ago, diagnosed maybe within the last 6 years. After a couple of years of trying to maintain the house and my mom, my dad decided to move out of their home and into a retirement community. It was a god-send/blessing, perfectly timed, for my mom’s condition worsened soon afterward.

    My dad’s personal challenges were trying to maintain his own health and sanity while taking care of an increasingly belligerent Alzheimer’s patient (my mom was NOT a good patient – very hostile and negative). He found sly ways of extracting himself from my mom (and her condition) for periods of time that wouldn’t draw her wrath, but he felt at times he was being dishonest. I would tell him he was in survival mode and was doing okay.

    My dad’s faith through the ordeal has remained strong. I know he turned to God and Jesus for help frequently. God-sends during the time were books by Brennan Manning (esp. Ragamuffin Gospel) and Max Lucado.

    My dad has always been a joyful, pleasant, humor-filled person, and I know that spirit carried him through the tough times. To be honest, we made a lot of Alzheimer’s jokes and gallows-humor jokes. If you aren’t able to laugh at your lot, you’ll end up crying in utter despair, so I never felt too guilty about our sense of humor through the worst of it.

    Some of the things my dad found helpful were books and literature on Alzheimer’s and on care-giving. Reading that care-giving is DIFFICULT and that care-givers need to take care of themselves was a huge revelation for him. I’d say things began to improve when he realized he wasn’t alone and he wasn’t imaging the difficulty and he shouldn’t feel guilty about thinking that taking care of his wife SUCKED. He found Alzheimer’s support groups to be a fairly mixed bag (usually based upon how engaging the facilitator was) and drifted away from them to never return.

    We saw Jesus in the care-giving that my mom received from the assisted living facility. Whether the people there believe in Him or not, He was present in their spirit and actions. Some of those people were closer than friends and family by the time my mom passed.

  6. David Cornwell says:

    I want to write about one aspect of caregiving: what the Church as the Body of Christ can do for a person who is in his/her final illness.

    My sister-in-law lived about 260 miles from us when she was diagnosed as having a form of Lou Gehrig’s Disease. There were no local relatives available to take care of her. Her husband had died two years before. My wife was the nearest living relative, and she suffers from Parkinson’s. Doris was a Pentecostal, who believed people only suffer because of a lack of faith. Complications were as follows: She believed in the soon-to-come rapture (she was sure she would be alive at Jesus’ return). Her theology was a complicating matter in several ways that I won’t discuss.

    She was a hoarder, in the worse sense of the term. Her house was packed full of material possessions, many of which had not been opened. Her living room was converted to a huge clothing closet. There was just a pathway through the hall to her bedroom. The kitchen was basically unusable. She had a small, snippy, loud dog, which did her bathroom business all over the house. Plus the dog was dirty and matted.

    Marge and I made trips to her home, but there was little we could do. We’d come away very depressed and at wits end.

    However her Pentecostal church became for Doris, and for us, the Body of Christ. They formed a temporary task group to see to her needs. They contacted us to see how far we would allow them to go in taking care of her. We agreed to give them total power, including power of attorney, and control of her finances, which were in terrible shape because of credit cards, giving to television ministries, excess buying, Christian hosiery club, and you-name-it.

    The Church agreed to give us anything of hers that we desired, for whatever reason. In caring for her they provided her with meals, investigated her finances and slowly worked to fix it, payed bills, and generally saw to her well being. In time they moved her to a smaller apartment, then a local nursing home. Getting a person into a nursing home these days can be complicated. The church handled all of this. They totally cleaned out her house, destroying what was useless, giving unusable clothing to charities, and preparing to auction off the remainder after her death. She had some rather expensive jewelry, which pulled a good price. I think the church came out ok as far as outgo vs income involving her care and may have made a small profit. They were entitled to whatever they received!

    They also watched over the sale of the house, and quickly found a buyer.

    When we would visit, the church people would welcome us with open arms, supporting our presence in any way they could. We never once had reason to suspect their honesty. We still talk with a couple of them by phone on occasion.

    • Nice story of a church “doing good.” Thanks for sharing it.

    • Wow. That’s nothing short of amazing. Talk about going the extra mile….

    • Sounds like my mother. Except that there was no local church. We finally got involved when she had to go to the hospital and never made it home again. Her home was not as bad as your description and there were no pets but still over 1000 man hours in just sorting through stuff plus more time selling things off and getting the house ready to sell.

      What is it about people who grew up in the 20s 30s 40s that seem to fall into this pattern. Have people always been this way and it was just the post WWII economy and retirement plans that allowed them to end their lives this way. Alienated from their children?

      Not just me. Almost everyone I know in their 50s and 60s have similar issues with their parents.

  7. My mother was over 60 years of age. She had cancer and some other health problems. I had to help care for her because my father could not afford a health care professional visit regularly at our home.

    She was in and out of doctor’s appointments the last year or two of her life.

    My parents were living in a two story home at the time. My mother got so weak, she was unable to traverse the stairs, so dad rented a hospital bed and set it up in our den, and we cared for her there. I helped bathe her, feed her, etc.

    My dad’s attitude did not help. I understand he was under stress, but he didn’t make things easier.

    I sometimes had to take the “night shift” in caring for Mom. I had to sleep across from mother in the den, me on the fold out sofa bed, her on her hospital bed. Sometimes, I would fall asleep. But I’d always tell her, if I fall asleep, call my name and wake me if she needed anything, which she would not do. So she would fall down or have accidents, and my father would get angry at me for this.

    I sometimes watched Mom during the day, so Dad was able to run around town getting errands done, or go shopping.

    I sometimes watched comedy shows or movies to help things. Laughing at comedies helped during the care taking, when Mom was still alive.

    Caring for Mom was physically draining for me. I was already in bad shape at that point, as I had quit a full time job (where I was harassed on a regular basis by one supervisor), broke up with an idiot, selfish doof of a fiance’, and so I had slacked off on proper diet and regular exercise around that time.

    We didn’t have any family living in the city we were in when Mom got sick. Our family lived out of state. My father was regularly attending a nearby church. None of his church people came over to help us care for Mom.

    After Mom died, some of the church people there invited dad over for dinners at their homes and so on.

    I think the most disappointing, heartbreaking aspect of this for me was the neglect I received after mother died.

    I really thought that the Christians around me (extended family) would be supportive and allow me to talk to them on a regular basis, but that was not so.

    I was, for the most part, ignored. When I got a little bolder and started reaching out and asking these people (and some people at a local church in the new city I moved to after mother died) for assistance, I was either coldly rebuffed, given platitudes, told to get a hobby, or I was shamed.

    Some Christians quoted Bible verses at me in chipper, upbeat tones, which made me either want to cry or punch their lights out. I was told in sunny tones to, “Just turn it over to the Lord!,” or, “Just read your Bible more!!” – that sort of thing.

    I realize these Bible- quoting, religious- platitude spouting people meant well and were not intending to hurt me, but come on. And these are people who are past 50 years of age, these are not inexperienced, naive 20 year old kids who don’t know what to say or how to act around the bereaved.

    A lot of people in my family (and at the church I went to for awhile – and the majority of these people say they are Bible-believing Christians) really believe in repressing emotions.

    I have yet to meet a Christian in real life who practices the New Testament admonishment to “weep with those who weep.”

    The Christians in my family or local churches would rather have their eyes poked out with a sharp stick than to actually get off their butts and sit with a hurting person for an hour every so month (or take a phone call off of) and just listen to that person talk through her issues. No, that would be a fate worse than death.

    And, hey, they don’t want to miss their favorite TV shows, even though those shows are over 50 years old and can be purchased on DVD now (yes, I actually had one family member tell me this, and this is someone who used to call my mother for months for emotional support years ago, when someone near to her had died, and my mother took those long phone calls for a long time).

    If you are sad, suffering anxiety, in grief, or whatever, the Christians in my family and at the local church I went to believe you should deny that pain, act like you’re okay, and throw yourself into volunteer work.

    It’s considered shameful (and a tad selfish) to ask for emotional help, to admit to being emotionally needy and sad. You’re supposed to suck it up and soldier on all by your little self.

    Several times, I’ve had Christian family (including one Uncle who worked as a preacher for awhile) have the audacity to characterize my GRIEF (my pain over losing mother) as being “self pity.”

    I wanted to punch people who tried to depict my feelings of loss as being “self pity,” as though it’s selfish to feel pain over the death of a loved one.

    I also got a recurring theme from Christians: that the pain I was experiencing at my mother’s death was not really a big deal, because hey, don’t you know there are people suffering far greater things in other parts of the world, such as girls sold into sex trafficking, wives in domestic violence shelters, or orphans with no rice to eat in Africa.

    I am truly sorry that other people in the world suffer abuse – hungry orphans, abused wives, and so on – but Good Lord, did it ever hurt to have my pain dismissed like it was nothing because in some people’s view, death of a family member is not as severe as (__insert type of other hardship here__). That attitude infuriated me and insulted me.

    But so many Christians I kept running into kept playing the Pain Olympics, wanting to compare my grief to other people’s pain in life, and hold up score cards, saying mine was nothing by comparison. That attitude actually prolonged my grief, added to the pain I was already in.

    Losing mom was tough enough, but the sheer amount of stupid comments, shaming, scolding, and minimizing added to it. Being ignored hurt, as well. Especially around holidays, or my mother’s birthday.

    I started exercising and dieting again after mother died. That helped with some of the stress and grief. Creative pursuits helped, keeping a journal, and listening to favorite music helped.

    I’ve only found Bible reading minimally helpful, after the loss. Sometimes I’m too depressed to read it much.

    And that so many Christians have used the Bible as a weapon with me – they quote Bible verses at me when I’m hurting, instead of just giving me a hug or a kind word – has caused me to kind of disdain the Bible to a degree. I’m sometimes hesitant or afraid to open it and read it.

    • Wow, Daisy. So many unhealthy and hurtful things you’ve experienced…it almost boggles the mind. I try to avoid the trite Christian cliches and responses in all my interactions with people who are hurting, and whenever I see it I cringe.

      • @ Rick Ro.
        Thanks for at least validating that what I’ve been through sucks dirt. I do appreciate that.

        The negligence or insensitivity of Christians after the loss of my mother is one huge thing that caused me to doubt the Christian faith. I’m a bit agnostic, a bit Christian now as a result (due to other things as well, but this is one of them).

        I’m not seeing how Christianity can be true if so many who claim the name of Christ are unwilling or unable to do even the most basic stuff the Bible tells them to do. Apparently, from what I’ve experienced first hand, the Christian faith does not actually transform people and cause them to act with kindness towards other.

        My mother was a Christian, but she actually DID STUFF for hurting people, like took their pain filled, three hour long phone calls, she cleaned their dirty dishes, brought them soup when they were sick. I tried to help people when and where I could.

        I just assumed that all Christ-professing persons were like my mother, that they actually LIVED OUT the faith, but most of the ones I’ve come across (even family members!!) just mouth platitudes. They don’t want to actually help another person.

        What’s even more pathetic in my case is that I was just asking for a sympathetic ear to listen to me talk about the grief and some other stuff for many an hour once ever 3 months, but they could not even be bothered to do that little. I don’t think an hour long phone call every 3 months is asking a lot. I was not even asking for any money, or for anyone to mow my lawn or clean my dishes or anything like that.

        And I am really, really burned up and sick and tired of my family (and some Christians in churches or in some of their web sites) telling me that my feelings don’t matter, and I should just stuff all the pain down and go serve other people by working at a soup kitchen.

    • Yea though I walk through the valley of the shadow
      Yet I will fear no evil
      I have cursed they rod and staff
      They no longer comfort me
      Love rescue me

      I’ve conquered my past
      The future is here at last
      I stand at the entrance
      To a new world I can see
      The ruins to the right of me
      Will soon have lost sight of me
      Love rescue me

      https://www.youtube.com/watch?v=fY9R6A20MUk

      • A Sheep
        Rick Rosenkranz (2011)

        The Lord is my shepherd, but still I want.
        He makes me lie down in green pastures
        tainted with patches of brown.
        He leads me beside waters raging, not quiet.
        He restores my soul, of that I have no doubt;
        He guides me in the paths of righteousness
        for His name’s sake, yet still I wander.

        Even as I walk through the
        valley of the shadow of death,
        I will fear evil, for though You are with me,
        You don’t always take away the cup of suffering;
        Your rod and Your staff, I try to let them comfort me.
        You prepare a table before me in the presence of my enemies,
        but I’m not sure what You are serving;
        You have anointed my head with oil,
        which does make me feel loved.
        Surely goodness and mercy
        will follow me all the days of my life,
        but do I believe that is true?
        And will this honesty keep me
        from dwelling in the house of the Lord forever?

        The Lord is my shepherd.

    • Adam Tauno Williams says:

      > playing the Pain Olympics

      Ugh, I so hate that game.

      • @ Adam T W

        My sister excels at the Pain Olympics. And she loves to play the game!

        Losing my mother was tough, the insensitivity of other Christians and family (or being ignored by them) after mother died really hurt and made me angry, but my sister has been an on-going source of pain for me too.

        She above all people loves to play the Pain Olympics. She thinks the grief I feel over losing our mom (I was way closer to mom than she was) and my subsequent increased anxiety of the last few years doesn’t matter, because she thinks she has life tougher than I do.

        Whether she does or not is beside the point. Even if I concede that she has tougher life challenges than me does not make it okay for her to say my pain and problems are nothing – but she often does just that.

        My sister will not show me kindness or sympathy, but huge hypocrite she is, was expecting me to quietly and patiently listen to her in 1 to 3 hour long phone calls where she will complain non-stop about her job woes, health problems, her boyfriend- is- a- jerk problems, etc.

        And I would just sit and listen to her complain, and just say, “I’m sorry you are having a bad time right now.” I didn’t tell her that her problems were nothing, I didn’t judge her, or give advice. I just listened and gave sympathy. But did she return that favor to me? NOPE.

        If I tried telling her about my pain or problems (including coping with mother’s death), she would explode in a rage, scream at me, sometimes tell me I was living my life wrong, tell me my problems don’t matter because they’re not as serious as hers, etc.

        So my sister will compare your problems to hers and dismiss yours as being no big deal, and then, she has the nerve to expect you to feel sorry for HER and be compassionate to HER for her problems, but she will not be sympathetic to you over your problems.

        She wants sympathy but will not give sympathy. She will scream at you and call you names but still expect you to feel compassion for her and treat her like a little baby who deserves hugs and kisses.

        So I’ve been dealing with her while dealing with the grief over mother dying the last few years, and I’ve had to suffer this garbage alone. All the family I’ve tried phoning or e-mailing just brush me off or they lecture me.

        Like I said in another post, if one more Christian at a church or Christian family member tells me to stuff the pain and anger down, and “think less of yourself, think more of God, and go volunteer at a soup kitchen!!!,” I swear I may very well punch someone repeatedly in his or her face.

        • Daisy,
          I’m so sorry for how you’ve been treated. In my losses I found that people I counted on sometimes could not be who I needed them to be at the time, but God brought up other people I never expected. I hope you will find someone who understands and sympathizes. I know that I was pretty stupid toward people until I suffered, and I was amazed at those who were kind to me. So I try to be toward people the way I’d want to be treated, even if they don’t deserve it. It’s what Christ did, and that’s the only comfort I can find some days.

  8. OldProphet says:

    Wow Daisy. I’m not the world’s most compassionate man but I’m sorry that the Body of Christ has failed you I pray that God will give you peace and help Himself.

  9. As beautiful and touching and godly as these stories have been…they also terrify me. I’m the one child who hasn’t left home yet. Literally, I live with my parents, Driscoll would love me. And there are many reasons for it: bad job market, years of trying to make freelance work for less than $800 a month, median one bedroom rent of $950, older than half my friends who all have places together, or on par with same age friends who are buying second houses and already have a few kids…knee surgery, deep depression, lack of self worth and esteem…so many different things. I can tell a lot about a person depending on how they react to hearing this.

    So…being a caretaker for my parents terrifies me. Because I don’t want to be that person. I’ve never been away! I lived on my own for a few years before health and finances forced me back home and kept me here, but I’ve never gotten away really. I don’t want my life to be an utter waste. I don’t want to be in charge of them, the responsible son, the good boy.

    I love my parents. I love my family. But I want to get away so bad. And unlike Jonah, unlike the Prodigal Son…I don’t plan on coming back.

    So all these stories are beautiful. And utterly terrifying to me. I. DO NOT. Want that life.

    Ever.

    • Christiane says:

      Hi STUART B.

      “I love my parents. I love my family.”

      I love your honesty.

      No one should judge another for saying they ‘don’t want that life’. But, STUART, no one wants ‘that life’ when it wears you down to nothing and takes all of your time and resources and people back away from you and your situation because they aren’t able to see it and still be at peace with themselves without offering the help that might save you . . . the help they don’t have to give because it is not within them . . . we can’t judge them either

      I spent many years long ago raising our son with Down Syndrome and even though I never asked, people backed away . . . the saying ‘never ask for what ought to be offered’ was what I had been brought up with. So we didn’t have support in those days. I STILL can’t ask for help. And today, my son is in a very fine situation in some of the best care on the East Coast, the result of Divine Providence of which I am certain and so very thankful.

      Don’t judge yourself. But know this: when you love people, you will find out that it brings up from within you a desire to help them when they are in trouble. And you find that you will do that which before seemed impossible to do before you ‘had to’. I think that is what ‘love’ must be all about, STUART. It has a price. It asks much of us. And sometimes we respond to ‘love’ in a way that we had not foreseen.

      Is a story about St. Francis, who avoided lepers, and he prayed about it and wrote this:
      ” “When I was in sin, the sight of lepers nauseated me beyond measure; but then God Himself led me into their company, and I had pity on them.” Francis was able to stay among them and serve them in humility, but it took the grace of God to make this possible for him. So it is with all of us who are worn out and ‘burned out’ and fearful of not being able to ‘handle it’ . . . grace is a strange gift . . . it comes to us much like the Hand of Christ Who reached out to take hold of the drowning St. Peter . . . and when it comes, we are blessed and grateful.

      No one to judge. No one to be blamed. Within ourselves we are lacking in much of what is needed in the face of the great trials. It’s no one’s fault when we grow so weary, because how else could we know the power of God’s grace ? How else could we possibly know?

    • I wish we lived closer, Stuart. I’d love to grab a brew with you sometime and chat. Don’t ever leave iMonk. I really enjoy your honesty. I wish I could wave a magic wand for you and change things, but alas….i can’t. Blessing and peace during this time and tribulation,

      • Michael Bell says:

        +1

      • Little music monday for you then.

        https://www.youtube.com/watch?v=gGTbAa-7GTM

        • you know, i was born in 85, and living in IFB, i don’t really much of the world before 2000.

          but if this song is any indication, there are distinct parallels between Reagan and Bush and now Obama’s drones warfare.

          and how is America NOT the great white satan? we bully, we bomb, we terrorize. we are the enemy.

          https://www.youtube.com/watch?v=x6ifY1UV3CM

          • You Reap What You Sow
            (Rick Rosenkranz, 2005)

            If everyone believed it was true
            “You reap what you sow”
            Then the many grim Gardens of Death,
            Bleak graves and mounds filled with corpses
            Cultivated over the endless ages of war,
            Would succumb to fields of roses
            As flowers, not bullets,
            Grew from the muzzles of guns
            And love began to bloom
            Instead of the blown-off limbs
            Of the maimed.

            If everyone believed
            “You reap what you sow”
            The bodies of those killed in battle
            Would sprout beautiful sweet petals of peace and forgiveness
            Instead of blossoming into vengeance and hatred;
            Grenades and rockets
            Would no longer explode with death’s unholy shrapnel,
            But rather discharge seeds of kindness and gentleness;
            Hot metal fragments wouldn’t sear the flesh with pain and agony;
            In their place would come grace and mercy.

            I dream
            My impossible dream:
            People believing that they reap what they sow
            Bombs loaded with love
            Raining down from the heavens like huge droplets of water
            Bursting upon the earth
            Tilling the soil like a farmer’s plow
            Bringing forth life
            Sowing seeds of a peaceful tomorrow.

            If people truly believed
            “You reap what you sow”
            Wars would cease to exist
            As hate-filled and fearful people
            Learned to harvest a new crop,
            Yield the precious bounty of Friendship,
            Whereby they might find it in them
            To shake hands with an enemy
            To hug close those they once sought to kill.

          • Sadly, yes. We have a Satanic aspect, which other people in other places, as well as right here at home, have suffered. Perhaps we need a national exorcism, performed on the national Mall. If we could resurrect him, William Stringfellow would make the perfect exorcist. He once performed a public exorcism of Richard Nixon in absentia during the bombing of Cambodia.

          • David Cornwell says:

            Robert:

            “William Stringfellow would make the perfect exorcist.”

            With the demon exorcised, would we even recognize ourselves?

      • Adam Tauno Williams says:

        +1

  10. I care for my daughter who has a form of muscular dystrophy. She is brilliant and started college at 15 years old. She is currently doing her Masters degree in Scotland at age 20 and my husband and I moved here with her to take care of her so she can fulfill her dream. We all worked a year and she fundraiser and her parents are “missionaries” raising support as dad works as an intern at a church on a Charit Worker Visa. I primarily take vpcare of M. Although bright she is very weak and fatigued and bound to her wheelchair and needs physical help in every activity.

    we have generally found our church communities – as individual people- to be very willing to be the hands of Christ – to come alongside and minister in true ways, we have always found individuals who love beautifully. When my husband was an associate pastor the leadership was very sensitive to his need to be with his family and respected our boundaries in a way that is not typical.

    The episcopal church she belonged to was overwhelming in their support of and love for her last two years.

    As a caregiver here are things that are NOT helpful. Trite advice and spriritual words without being willing to walk alongside and lift the burden. Telling me what to do that would helpful but not being willing to help me do it. People don’t realize that caregiving is EXHAUSTING and every ounce of energy goes into it. So if I ask for help and someone says “here’s how you could do that – you should ….” I CANT!!! Please help me and do it for me! I was once asked by a group what I needed. I said I was too tired to cook. I would love some healthy meals delivered to my home. Even healthy takeout. Not one person responded but several gave prayers and advice and suggested I go to the gym daily because exercise would help my low energy. So DONT do that. If someone asks for specific help, believe them and do what they ask. it is hard enough to ask for help so when someone has the guts to ask, just do it. On the flip side when my daughter was in the hospital this year, my friends did just this – even went to my house and cleaned my bathrooms bc that is what I asked for! Brought souo to my hospital room. Etc…

    I have a million things to stay but I’ll stop there.

    • Adam Tauno Williams says:

      Ditto.

      I recently traveled to Chicago for a funeral of a relative, yet another very unexpected event [kinda getting sick of those]. I returned to a mowed lawn and meals in the fridge. Worth 10x any words.

    • Lynn said,

      As a caregiver here are things that are NOT helpful. Trite advice and spriritual words without being willing to walk alongside and lift the burden. Telling me what to do that would helpful but not being willing to help me do it.

      …So if I ask for help and someone says “here’s how you could do that – you should ….” I CANT!!! Please help me and do it for me!

      I was once asked by a group what I needed. I said I was too tired to cook. I would love some healthy meals delivered to my home. Even healthy takeout. Not one person responded but several gave prayers and advice and suggested I go to the gym daily because exercise would help my low energy. So DONT do that. If someone asks for specific help, believe them and do what they ask.

      This echoes my own experience in dealing with grief after my mother died.

      Christians liked to dole out (simplistic) advice to me, but they didn’t want to actually get off their rear ends and DO anything to help me…

      Which goes against the Bible verse James 2:16, tell a hungry man to “be warm and well fed,” when the Bible says you are supposed to make that man a sandwich and give him a coat, don’t just give a suffering person platitudes.

      After my mother died, I read books and some blogs about what to do if you are in mourning. They said you need to go into therapy (which I could not afford), or reach out to people in your family or church to let them know you were hurting and needed support.

      It took me some courage to reach out to people, even extended family, and ask for emotional support and so forth.

      I’m an introverted person, bashful, and it felt embarrassing asking extended family (who are adult Christians, most over age of 50) for help, and to ask folks at a local church for help. It was hard showing vulnerability around people, admitting I was in deep grief, etc.

      All I asked for was to be able to talk to someone on a regular basis, like for an hour once every three months at a minimum, but none of them wanted to do that!

      The few who did take the occasional phone call from me would shame me for admitting to being in grief, try to get me off the phone as fast as they could, and/or give me cliched’, unhelpful advice (like, “Take your mind off of you by volunteering at a soup kitchen!!”)

      The last year or so, I’ve been having anxiety and anxiety attacks on top of everything else, and some in my family are STILL feeding me the stupid “go do volunteer work” shtick. None of them actually wants to be there for me.

      Son of a biscuit, I don’t need volunteer work or a hobby, I could just use a friend to sit and listen to me for an hour a month without judging, giving advice, or criticizing or shaming me.

      Most Christians I’ve experienced are completely useless in helping and giving comfort to people who are having problems, who are in grief, or whatever they’re going through.

      Many Christians love to quote Bible verses at you, shame or criticize, or tell you how you SHOULD be doing “thus and so,” but not a one will actually lift a finger to help in a tangible way. I am so fed up with this.

      • Christiane says:

        “Son of a biscuit, I don’t need volunteer work or a hobby, I could just use a friend to sit and listen to me for an hour a month without judging, giving advice, or criticizing or shaming me.”

        this blog helps a little in this way, DAISY . . . it’s good therapy here . . . I hope you soon find that friend to sit and listen to you,
        but until then, we are here for you
        . . . God Bless

  11. Many years ago a friend passed away. I did not know what to say or how to communicate as the words just were not there for me to get out at the bedside of a loved one passing. But I remembered how nurses went out of their way to provide dignity and care for the needs of my friend while family and friends stood around (in the hospital room) wondering what was next. Now it is my turn in a sense. I am now a nurse and I have been able provide the small simple things that can help make a difference. A simple gesture of care, a small act of kindness, an offer of prayer seem to me to be the things that matter most. Put aside thoughts and doubts about doing the right thing and simply do the things that show love. Volunteer, join a support group, visit those who need company, help with the things that you are able to help with, and remember prayer. In this way you too will be able to make a difference. Kindness and love are not always easy to come by…..but I will continue when I can and I hope you will as well.

  12. I know I am late to these comments, but just in case it is seen, I will add my 2 cants worth. About a decade ago, my mom had a stroke. All the siblings got together to figure out how to care for her. 3 of the 5 live elsewhere, so I knew that eventually most of the burden would fall on me. But at that point, it was crisis management. Our requests for placement in a rehab center were denied, so we were bringing her home, as she had always said she wanted nothing to do with a nursing home. She could walk somewhat, with assistance but would need someone there 24 hours a day at first. My siblings looked at me, because I was the one “who didn’t have a job.” Well I happened to be homeshooling my 5h grader that year and it felt like a full time job to me! Furthermore I also had a first grader in the house and didn’t think either child should be abandoned. I was happy to handle bills, food, appointments and such, but felt I was unqualified at best to handle all her physical needs. In fact, because I tend toward anxiety and depression, I literally felt if I tried, it would be dangerous to my own health.

    I saw the wisdom in my refusal when my father in law died, a couple of years after my mother in law was diagnosed with Alzheimers. He had to take over the cooking, which was new to him. He did have assistance with the cleaning, but otherwise no help that I could see. His health simply failed under the stress of caregiving. I have often wondered if he would have lived longer if he had hired someone to give him a break, a few hours a day and maybe helping with meals. People deal with stress differently, but even leaving to take a walk, or to go to a yoga class may be impossible without some kind of respite care.