To Everything Turn, Turn, Turn: The Darker Side of My Caregiving Journey

Storm clouds on Yellowstone LakeTo everything there is a season. Twists and turns. Times when the bond between me and my loved one (my caree/wife) is deep and other times when it is constricted and vapid.

Such has been the recent case. However, it’s been a pattern for a long time, exacerbated dramatically when I had no choice but to have her placed in a nursing home. She was extremely angry at me. I think she still is deep down.

Besides having gotten sick from burn-out, losing my job, and so much more, I was left with a tremendous mess with which to contend; the foreclosure of her mom’s house and dealing with 45 years (and more if you count grandparents) of history to sift through; getting  the deed to mausoleums her uncle left her into her name; having an estate sale that was more of a bust in many ways then a boon; dealing with our house and the mess it had become; severe damage to the house by Sandy; four months to obtain Medicaid; and I can go on with a whole lake of other tasks I’ve had to handle and continue to have to handle.

In the mean time my wife  has continually wanted to dictate just about every move of mine the more and more she has felt out of control. She still does through guilt, shame, manipulation; using her illness as a weapon to get what she wants.

She expects me to be with her exclusively every moment even though it is not necessary and I have so many fish to fry. She has become a bottomless pit. She will not do anything to occupy her time. She doesn’t even seem to try to get better by affording herself of the services available to her, i.e., physical and occupational therapy. Every time we speak, it is a litany of her not getting her needs met or in some attention-seeking strategy. She wants treatment on her terms and often wants to dictate her treatment like the proverbial difficult health provider patient.

I realize the psychological aspects of the need for  control from a person who feels they have lost control of their life. However, it has gone too far. The issue is not a new one. It has been around as long as we have been married. I made a lot of concessions over the past 26 years out of what I thought was love. But as I look back, I see that I had been longing for love too much. Still in the early stages of  my bouts with Major Depression leading to Bipolar Disorder, I had lost a lot of confidence in my self. I continued to have the inferiority feelings I had since a child. And, there was the other guilt and shame of an adolescence and young adulthood not well lived in many instances.

So, as I look back, I lacked a solid foundation of healthy self-love. Without realizing it, I unwittingly got it from people outside of myself. Thus, I wound up losing myself. I lost so much of myself by making concessions that now I am painstakingly attempting to build that love for self; self-confidence; self-efficacy; etc. during perhaps one of the worst crises of my life.

My caree’s long-standing issues which were not always evident to me are now glaring at me. Her demands, her possessiveness, power and control issues have become inexhaustible and I fear being swallowed up by them. I am setting healthy limits and, when I do, I’m told I’m abandoning her. I tell her, if I crumble, I will no longer be of help to her. She says she understands but her actions belie her words as in the next breath she attempts to get more time out of me.

It has been a roller coaster ride of short-term agreements followed by the same old patterns. One might say they might even mirror the cycle of abuse, in this case, mental and emotional. What follows is physical burnout and feeling beaten down; emotional turmoil; mental anguish; and spiritual exhaustion and bankruptcy. As long as things are going her way its good. Once I express my needs for time to attend to very important tasks, self-care; etc., I’m distancing and abandoning.

I chose to use the Community Caregiving Journal to tell my story as the three words helped me to organize and write down my thoughts and experience. As many of you know, I already see a psychiatrist. I have a call out to a therapist who has a specialty of working with people who are dealing with a loved one with serious illness. And so I turn in other directions to develop bonds with others who can help me in this lake of turmoil I am experiencing. One day at a time, one moment at a time….with my Higher Power supporting and guiding me along with family and friends.

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About Bob

I am 61 years of age. I am a caregiver to my wife, age 63, who is bed-bound in a long term care facility. She is paraplegic from severe neuropathy from her chest down to her feet. She also has muscle atrophy and has been diagnosed with Parkinsonism. She had 4 back surgeries between August of 2010 and December of 2011 initially because of burning, and numbness in her legs which turned into paralysis of her two legs. The events that took place from her first surgery to now have resulted in the loss of life as we knew it, the loss of our home and so many other losses. It has all been heart-breaking. I wound up on disability from overwhelming stress and depression in May 2012 and have not yet been able to return to work. Both my wife and I are social workers by profession for 40 years, and 38 years respectively. We have always been very close. We have had a lot of ups and downs over the past 2 1/2 years as we struggle to find our new normal. Caregiving.com has become like a new home for me and has gotten me through some extremely difficult times and I imagine will continue to do so. Denise Brown, founder/creator of Caregiving.com, and its members have created a sacred space where all of us can share the wide gamut of experiences, emotions, etc. that comprise our caregiving experience. Caregiving.com is also an oasis of support, education, wisdom, tools, comfort and more,

22 thoughts on “To Everything Turn, Turn, Turn: The Darker Side of My Caregiving Journey

  1. Avatar of Sunshine=Sometimes

    Dear sweet Bob, you are going through a really rough patch I can see! I urge you however to not abandon your thoughts of the love you shared with Adle while you and she were on a more stable and realiable footing. She was the light of your life I think. No? Maybe you can still – on a shorter and limited time spent with her – rememeber that. What can I say? This journal is so different than the others you have written. Don’t you agree? I guess what I am saying is “Don’t throw the baby out with the bathwater.” Blessings, friend! And I hope you connect with your therapist soon! I know how much I need both of mine too. Life takes a new turn when we can write – what I call self-therapy – and talk to an expert. Please know I care! {{HUGS}}

    Reply
  2. Avatar of ejourneysejourneys

    I hear you, Bob. And to me, you sound very self-aware of the dynamics going on. It’s painful, but it’s a lot better than being blind to them. Give yourself credit for recognizing the problems.

    Many times I have to remind myself that it’s my partner’s disorder talking. I’ve had to detach myself from her neediness, manipulation, and anger, and focus on what will be best for both of us (both together and as individuals). Her neurologist has said we can’t tell where her brain damage ends and her psychiatric disorder begins, but that both exacerbate each other. I have to remind myself to not take things personally and to just keep on keepin’ on, which sometimes means standing my ground, especially where issues of health and safety are concerned. I am better able to express my love as a result.

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  3. Avatar of BobBob Post author

    Thank You Sunshine so very much. This journal entry was very difficult to write and I don’t feel especially good about it. But the issues I mentioned were beginning to fester for me. It may have been inappropriate to have written and saved for when I hook up with a therapist. She is the light of my life and I do love her very much. A lot of her behavior is trying to meet her needs and I’ve taken it too personally. I think it’s because I have felt like I’m burning out again. Can’t wait to hook up with a therapist. I feel badly that I ranted as I did. Especially when we had been on a more stable and reliable footing. Thanks for taking the time to comment, Sunshine. Thanks for reminding me to put things in perspective rather than ranting as I did. Blessings to you…Bob

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  4. Avatar of BobBob Post author

    Thank you EJ. I was hesitant to journal this but I had no where to go with how things were festering inside of me. I know that it might have been better expressed to a therapist rather than as a rant on the site here. I think I have been burning out and it all came out as a lot of anger. I saw Adele today and talked with her about the need for us to spend more time trying to fully appreciate each others plight and that essentially we are rowing in the same boat in surviving each day. I let past issues color the present which I regret. I still have a lot of work to do in being a good caregiver. I deeply appreciate your feedback EJ.

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  5. Avatar of Sunshine=Sometimes

    Dear sweet Bob,
    You were just being YOU! Never worry when you tell us the true nature of your feelings. I just KNEW you loved your beloved wife more than you were thinking at the time. Adele is in a weakened place now. Scary and unknown. You are the pillar of strength now. You need to take care of her perhaps now – in addition to yourself and everything else which is so much too. No one is perfect, Bob. (Remember? Least of all me!!! Thank God!) Please forgive my calling you out on it. But I knew you had thought stuff which you didn’t mean. Now? After talking to Adele? You are even farther along your caregiving journey and can help her even more! Blessings! {{HUGS}}

    Reply
  6. Avatar of BobBob Post author

    You don’t know how much it meant that you called me out on it as you said. That took guts and I value when people are straight with me. You are so right, that Adele is in a weakened and frightened state. She feels very alone when I’m not with her. I let my fears turn into anger. We both feel lost and are groping together to find our way. Bless you Sunhine…(((hugs back to you)))

    Reply
  7. Avatar of DeniseDenise

    Hi Bob–I’m so grateful that you write the truth. It’s hard to do–which is why it’s good to talk it out with us. We understand.

    I think a marriage is hard in health. I think it’s really hard in sickness. It’s soooo hard to navigate the feelings when it’s feelings about decline, fear, awful changes, a life that can feel terrible. I think, in a marriage during caregiving, the challenge becomes: How do we stay friends in a situation that could make us enemies?

    You can tell us whatever weighs on your heart. Writing the truth doesn’t mean you don’t love Adele. It just means the feeling of being lost is overwhelming. You will find your way. You will. :)

    Reply
  8. Avatar of DeniseDenise

    Hi Bob–I’m still thinking about you. :)

    I think it’s important to acknowledge the moments that seem dark. I just spent this afternoon my niece, who is beautiful and smart and talented. We spent a few moments talking honestly about those feelings and thoughts which are dark for us. When we spoke out loud about what we feel, we both felt so much better.

    Life isn’t perfect. A marriage isn’t perfect. As individuals, we aren’t perfect. I think our life has perfect moments, though. And, those perfect moments always begin with honesty, when we gather the courage to tell the truth about where we are right now. It’s a perfect moment because that’s what leads us toward being found.

    So, my friend, I find you perfect.

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  9. Avatar of Sunshine=Sometimes

    Dear Bob,
    It may have taken guts what I did? But in a way it wasn’t the Truth as Denise and ejournys have said. Things are dark. (I get that when I talk to my aunt and two cousins who live together. They are all mentally troubled. I get that when I talk to my cousin in Vegas who is consumed by a disturbing thread of suicide attempts by her stepdaughter.) I am not good at dark…. Perhaps I will learn from you how to speak about the abyss and the lies I may live. I am crying now. I know you have spoken from youur heart and I have hidden all my darkness. I use to want to commit suicide for years. Then I met a very nice pastor who taught me to love light and love God and love life. He is no longer in my present but I learned so much from him. Maybe that is where I get my “goody-two-shoes” thinking from. I owe you an apology. Please accept it. God bless!

    Reply
  10. Avatar of BobBob Post author

    Thank you so much Denise. It helped to get it out. I’m sure Adele H as a thousand things she would like to say back and I told her that she can do that and I will blog her side here. I’m sure I have not been any picnic over the years and on our caregiving journey. It means so much to have a place where one can express themselves when things are going wrong and get the kind of unconditional positive regard that I have experienced here that you and our members have created. I’m not proud of having ranted like I did; however, I felt I had nowhere to go with what had been festering inside of me. I deeply appreciate the support and the wisdom; etc everyone who commented; etc has given. Everything you said is so true and I appreciate your encouragement.

    Reply
  11. Avatar of BobBob Post author

    Last night I talked with Adele and it again stirred up a lot for her and me. I was able to keep my cool pretty much by acknowledging her concerns and needs wile expressing mine also. I said that we need to find a way of being able to mutually understand each others needs without winding up saying things that hurt. I left it at that. This morning Iwoke up feeling drained and depressed. I decided to talk with a family member about what I was experiencing as I have before in the past. As I talked it out and brought it out to the light, the depression and anxiety began to lift. I wound up feeling stronger inside and had a good day at my brother’s house for dinner with other family. So, yes, getting things out in the open is so very helpful rather than letting things fester or feel isolated with no where to go except in an endless recycling of turmoil.

    Reply
  12. Avatar of BobBob Post author

    Dear Sunshine: Please do not berate yourself. It is very difficult for many people to talk about the darker side of things. Especially, when it has to do with family because one can feel they have been disloyal to their family member. Carl Jung, a Swiss psychiatrist and quite possibly one of the most profound thinkers of the 20th century talked about being in touch with the “Shadow” side of ourselves…the darker as pects that lie within us but we are often too afraid to acknowledge. When we do acknowledge our Shadow self and that we are not bad because of the darker aspects of our inner nature we feel a greater sense of wholeness as we no longer fear the darker side, but just see it for what it is–a part of ourselves that just is and not who we truly are at the deepest level.

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  13. RoaringMouse

    Dear Bob, What I heard was your open heart and soul crying out for some sanity inside the insanity of what you are experiencing. If there was ever a safe place to bare open your heart without being judged…this is the place. I’ve been there. That’s why I am still here.

    It is very tough to stand by your longtime spouse/friend, keep your head clear and not succumb to the many tornados that simultaneously spring up around you. But you did the right thing..you stopped to breathe…don’t forget to keep doing that.

    There were days when my hubby would fall under the spell of medication that would make him absolutely unbearable. I would have to keep everyone out of his room and yet myself would still medically provide his care while he hurled verbal rocks. With one medication I told his doctor it is the medication or me…I know it’s not the fault of my hubby! On those days, I’d walk away ..even if it was just the bathroom to read a magazine and give myself 5 minutes to intentionally refocus.

    You are a lot stronger then you know. Make sure you give yourself credit for that. Make sure you also take up on all the “hugs” that is being sent by everyone above. I’ve never ever felt a hug that didn’t help.

    Hang in there…there will be smiles for you as you continue your path in life!

    The Roaring Mouse

    Reply
  14. Avatar of BobBob Post author

    Thank you for the validation and sharing your experience RR. I’ve been hit with a lot today, so I’m going to take time to rest.

    Reply
  15. Avatar of Kat

    Dear Bob, Your kindness is evident and you’ve been long-suffering of your ill-treatment. My heart goes out to you. My hope is that there will be peace in your heart soon, and that there will be a special place in heaven for you one day. My Dad has a similar situation with my Mom’s behavior. We have daily trials of our patience, often hourly. It’s hard enough dealing with her disease and its ramifications; having to deal with her meanness is discouraging and demotivating. We’ve had to draw on some deep reserves of love, understanding, and compassion, and it’s early on. My husband told me that we are running a marathon, not a sprint, and I try to bear that thought in mind constantly. I’m learning to pace myself and take it less personally, but the constancy wears one down. May you daily learn new ways to find peace and strength to sustain you, Bob!

    Reply
  16. Avatar of BobBob Post author

    Dear Kat: Thank you so much for the validation. Your words, experience, and sentiments were felt deeply and it was very healing to know I’m not alone. We had a treatment team meeting today. The staff have been working very hard to meet her needs, but no matter how hard they try, she constaqntly has a litany of complaints. As I said in the blog, I think she is very angry for being in the nursing home, but God knows I tried all I could to keep her home. I’m not feeling so guilty about that anymore. My stance is to listen to her and have her make the decisions about her care without my input unless she wants it. I was glad today that she was aware of how exhausted I was and have been. And she understands how I struggle as much as she does, just differently. She knows I love her and care about her. Some days I want to bop her,
    God knows, but I’mm learning that comes with the territory. Thanks again, Kat

    Reply
    • Avatar of Kat

      I showed your original post to my Dad. He understood your emotional plight and the toll it takes upon one, to care for and serve a spouse who is not only ill, but inconsolable. You and your wife are in our thoughts and prayers. My Mom has days where gratitude trumps complaint, and they remind us of how she used to be before her illness became so debilitating.

      Reply
  17. Avatar of Sunshine=Sometimes

    Dear Bob,
    I hope today Adele has one of those “gratitude” days when the Old Adele pops out and you are seeing the beautiful love you shared again! If not? I hope so soon! Take care, friend! {{HUGS}}

    Reply
  18. Avatar of BobBob Post author

    Kat, I want to thank you very much for your thoughts and prayers for my wife and me. It also was consoling to know that I’m not the only one who deals with the ups and downs, joyful moments and dread-filled moments a caregiving journey can be. Blessings to you, your Dad and your Mom…I appreciate your friendship.

    Reply
  19. Avatar of BobBob Post author

    Thanks so much Sunshine….I’m afraid we have some tough times ahead but we’ll have our moments of gratitude also. God Bless you….Bob

    Reply
  20. Garrett

    Bob, this post is almost a year since this string was last commented on. I suffered all the rejection I could handle and then some. There are two feelings I wish to share that seems to always be side-lined. It is the shame riddled feeling of ‘please, just die already.’ and “All I want is out so I can move on with my life.’

    Neither do we privilege ourselves to acknowledge because it is so counter-intuitive. The truth is, we are locked in a battle of guilt over this with seemingly no moral way out. It took two long years after her death to finally realize my two failures. The first is to command respect by not catering to the way their fear presents itself. The second is to give yourself permission to leave if the first is not met.

    Our duty in marriage was never to lose our identity. Empathy is good. Sacrifice of the soul is very bad. Being in that position made me realize why people can hurt others. Your first duty is to yourself, to look in the mirror and learn the deep things that allow you to stay in Mr. Nice guy mode. It is OK and probably good for both if you take a phone-less vaca for a week.

    Reply
    • Avatar of BobBob Post author

      Garrett: Was surprised to see there was another comment on this post almost a year later. The original issues I spoke of still occur. I have had to take a hard line with my wife about unrealistic expectations; etc. I let her know that I would have to give up being her health proxy and advocate if we would not be able to satisfactorily work together in a healthy manner. So, that’s where things are right now. My hope is that it continues along these lines. Thanks for your sharing your experience and your suggestions. I definitely related to all of it. Thanks so much.

      Reply

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