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

Bob

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

Bob
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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Bob

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.

Bob

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

Bob

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.

Bob

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, \r\nGod knows, but I'mm learning that comes with the territory. Thanks again, Kat

Bob

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.

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