Thursday, December 15, 2016

Emotional Closeness versus Distance

Today is typically "mom day", but I saw the forecast and decided to help her yesterday instead of today. We live in an area with some brutal winter weather. Our metropolitan area averages between 110 - 120 inches of snow each winter. The plows and sanders keep up pretty well with the snow covered roads, but the wind, visibility, ice, and the occasional reckless driver make driving this time of year hazardous to our health. North of us, it is more like 300 inches each winter; it is a rural area with lots of small towns and villages. I don't know how they manage. For the young and hardy, I guess.

It is only 12 degrees Fahrenheit today, with a low of Zero! Wind chill will make it feel much colder. A good day to stay inside and keep warm.

My materials arrived for the Leaf Study. It includes an 8 inch tablet for video conferencing and a workbook with reading material and activities to be done on a weekly basis. Each week, there is a video conference with the assigned facilitator. I'm very hopeful and really looking forward to these sessions. The goal of the intervention is to provide the caregiver with coping skills to deal with the stress of caregiving.

I continue to learn as I go along. I seem to be doing better at preventing and minimizing upsets for Jim. It's not always preventable. Sometimes I just don't see it coming. When that happens, it is up to me to choose how to respond. The hardest part for me is not personalizing the hurtful things that are said.

Years ago, fresh out of college I took a job as an aide at a developmental center. I worked on a unit with fairly high functioning folks, but who because of their behaviors were institutionalized. (As a side note, the developmental center was closed about 15 years ago. All services are now provided in smaller, community based setting. Win-win for everyone involved.)

Anyway, I remember the challenges I faced working as an aid. I actually got quite good at preventing negative behaviors, calming techniques etc. I never personalized what was happening, simply viewed it as a function of their developmental disability.

Why can't I do that with Jim? I know why..... Not personalizing an interaction requires an emotional distance from the person. How do you do that when this is someone you have loved your whole life? These are just rhetorical questions, I know there are no real answers.

There are still plenty of good times, silly times and fun times. I think part of my survival will be to focus and remember these good times, and try to compartmentalize the bad times.

There continues to be a decline in language. Almost always, I am able to figure out what he is trying to say by paying attention to the context, prior conversations etc. Once in a while I get stumped. He usually doesn't get too bothered by it, just says something like "I'll think of it later."

Sometimes his perception of an event is quite off. And usually the perception is a negative one. We had a conversation the other day with someone we both know. The conversation was light hearted, a few laughs, very pleasant. The following day he commented that the person was rude and mean to him! I have to be very careful how I respond to something like this. If I say that I remember it differently, he is likely to become angry. It's always a balancing act, and in the end, it has to be what is best for Jim, keeping him safe, happy and content.

I had a great phone conversation with a very good friend of mine recently. I call it friendship therapy! We managed to minimize talking about Jim, and instead I was able to hear about what is going on in her life, and latest news about people we mutually know. It was wonderful. The friend and family connections keep me going.

Being able to write what is on my mind is also very helpful to me. Just organizing my thoughts, typing the words, helps me to process and work through some of the tougher issues. So thanks for stopping by. I so appreciate each one of you!

14 comments:

  1. I am always amazed how you manage to work through situations that would anger or hurt a lot of us. It is easier in retrospect to see the right way, not always so much while in the moment. Well done lady.
    So glad you have persons to go to where you can disengage and let in the fresh air.

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    1. Oh, you may be giving me to much credit Patti. But I'm learning from my mistakes, for the most part. Read, ponder, read, write, ponder; these are my strategies these days for gathering insight and strength.

      The friendships I have are amazing. I like how you describe it "disengage and let in the fresh air". I'm realizing that I get more out of our time together if the focus is not on Jim. I always feel loved and refreshed after spending time with friends. And that includes blog friends too :-)

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  2. Bob & I served as volunteers in a guardianship program in Texas. At one time Bob was guardian of a man who's mental illness had caused so much hurt his children signed him over to the courts. His daughter was a practicing psychologist. Once he became bedfast they again accepted guardianship of him and moved him to a facility near them. His bad behavior didn't bother Bob because he had no emotional involvement with him but it tore his family to pieces. As long as he was mobile and causing trouble they wanted nothing to do with him.

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    1. Wow, that is a sad, poignant story Linda. Thanks for sharing. It's a story that is probably more common than we realize. It must have been very rewarding to be able to volunteer for such an organization. I'm sure you and Bob made a positive difference in the lives of many people.

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  3. I'm just curious, Carole. How will you keep Jim from knowing about the Leaf study materials and video conferencing?.. Glenda

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    1. Hi Glenda. Good question! Jim is pretty blasé about a lot of things these days. But I did tell him that I was participating in a research study for caregivers. He knows that I am my mom's caregiver, so he just assumes it is in reference to her. When it comes time for the video conferencing, I'll just go into my office and close the door. That is not an unusual behavior, as we both sometimes do that if we are going to be on the phone for a while, so as not to disturb each other.

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  4. Up to now I have been quite ignorant of what you are going through. However, I have been watching a TV programme where the husband has dementia and the wife struggles. It is the first time I realised fully the extent of the illness and the violent moods. It made me wonder how I would have coped if my Joe had suffered with the same illness. I hope the study course is really beneficial for both of you.

    'The hardest part for me is not personalizing the hurtful things that are said.'

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    1. Thanks Valerie. It was initially such a shock to me to see my easy going, kind husband change into someone I just didn't recognize at times. I know our journey is likely to be a long one (many years), so it behooves me to adjust psychologically, and to enhance my coping skills while we are still early in the game.

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  5. I only know you through the words you write, but you feel like a family member to me, already! I care for you and Jim and look forward to your posts so much, because I know that what you are going through could happen to me, although it hasn't yet. We are both in our mid-seventies and I see changes in friends and family that I now know might be caused by mental processes. I have also begun to think of angry people differently. It might not have anything at all to do with me. Thank you for giving me a new perspective. And you are always in my thoughts these days. :-)

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    1. Thanks DJan. I think it likely is a universal concern. For other conditions, such as cancer, diabetes etc at least there is treatment and hope.

      This blog has been just wonderful for me. Being able to freely express what is on my mind, and then all these wonderful blog friends respond with such caring comments. I'm grateful every day for this gift.

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  6. Yes, focus on being kind instead of being right.

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    1. Wow, you summed it up so well Gigi! Thanks.

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  7. When my grandmother developed dementia, my aunt (Grandma's youngest daughter) who lived nearby provided most of her caregiving. As Grandma's condition progressed, Grandma developed the persistent misconception that my uncle (aunt's husband), a wonderful person whom Grandma had known and liked for more 30 years, was a bad person who stole from her. It was very hurtful to my uncle, and must have created a strain in my my aunt's marriage for a time. Even when you know that the negative words and behaviours are due to the disease and not the person's character, it is is very hard to deal with. Sending you warm thoughts Carole.

    Jude

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    1. Thanks for the warm thoughts Jude. And thanks for sharing with me about your Grandma's dementia. I don't know what the answer is; I suspect there is none. Other than to focus on what is good that is happening in your life, and hanging on to the wonderful memories of better times.

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