Nov 20 2012 in Caring for Partners by ejourneys
We are back to twice-daily foot soaks and my partner is back on antibiotics. Infection has also spread to her finger. She thinks one possible cause of either or both infections might be her frequency of picking at the carpet.
She may be surrounded by piles of clutter, but she can zoom in on a carpet.
I am very thankful for her podiatrist, who is (a) close by, (b) patient and attentive, and (c) dedicated to his work. He took a culture from her toe yesterday, to see what’s causing the problem, and will see us again on Monday.
My partner now thinks that the therapist she had been seeing in 1982 may have also been the one who had performed surgery on her lachrymal glands to help her cry. (Her records show no evidence of lachrymal gland surgery, or of the brain surgery she insists had given her MS.)
She points out that she had seen an image online depicting a “hidden surgeon” and that the image had been labeled as such. Therefore, her 1982 therapist had been a “hidden surgeon” because she had also been a nurse.
My partner asks me to repeat back to her what she tells me. She also asks me to tell her what my emotional reactions are to what she says.
That’s when this image comes to mind:
I preface what I say with, “I’m hearing you say that…” and, “I understand that you believe that…” Every so often I reiterate that we see things differently, and that I respect her beliefs but do not share them.
Because she also tells me, “Silence means assent.”
For my emotional response, I tell her that I am hopeful because she is working to figure things out.
It’s kind of like traversing a verbal minefield. Things don’t always go this smoothly. Often, her long monologues numb me out. If I’m eating or tired I try to table our discussion. Recently she’s been explaining her behavior while she had been hospitalized in 2009, which included walking into the hallway naked after her shower, turning her room thermostat up high and bundling herself until her fever rose to 102.8, and stashing her leftover cottage cheese and peaches in a dresser drawer (in that hot room) until a nurse had discovered them because of the smell.
My partner argued that cottage cheese can keep for five days unrefrigerated.
She’s started talking about her 2009 hospitalization as a way to trace back the steps that had gotten her into therapy. (Her behavior in the hospital, coupled with my photos of her hoarding, had gotten us some help from a social worker. The social worker had pointed us to the county mental health center.)
I think she is focusing on the therapy angle because her therapist is retiring. Last week was their last session. Someone else is taking over the practice — or my partner can return to the county mental health center.
She argues that her MS is “benign” because her MRI readings haven’t changed. She further argues that this means she is not disabled, which means she can find and get back to work.
I tell her I’m not a doctor, so I can’t really speak to that.
She discounts the cognitive neurologist’s assessment that “I can think of no job, however rudimentary, that she would be capable of carrying out.”
She goes back to reading Nicola Griffith’s novels to get clues into her MS (since Griffith has MS herself), and to picking at the carpet. When I suggest that she connect online with people who have MS, she tells me that she’s looked at MS forums and that the AMA is censoring what people can post.
Last week I saw this rainbow (it’s actually a double rainbow) as I did my errands:
I got home just before the skies opened up. A few days earlier I found these luscious grapes on sale:
They balance out the photos my partner had me take of her infected finger and toe, and of the subconjunctival hemorrhage (red eye) she had last week — it’s almost all cleared up now. The pictures came in handy because she thought she had been getting worse rather than better and wanted to see a neuro-ophthalmologist. When I showed her the Mayo Clinic page on subconjunctival hemorrhage, she insisted her case was different because of her brain surgery MS.
I’m very thankful that the photos I took finally convinced her she wasn’t getting worse and that we could just wait and see.
Last Saturday we attended a fundraiser dance recital. An auto accident had placed my friend’s student in critical condition and had taken the life of the student’s father. There must have been over 100 people gathered in the middle school auditorium. Their love for this young girl and her family was tremendous.
Afterwards (despite the announcements and the recital program), my partner had forgotten why we were there. She thought it had something to do with Afghanistan because she had overheard part of a conversation.
I was just happy she wanted to go, because it gave her a chance to get out of the house and to be with people. She had enjoyed the recital and volunteered to help put the chairs away. She was very tired when we got home, though.
Recently a high school friend of my partner’s sent me a message, since she and I are connected on Facebook. The friend sends my partner messages through me; I then print them out and give them to my partner. The last message from her friend had come in September 2010 (more than a year before my partner’s MS diagnosis). My partner hadn’t responded to it.
The friend offered her condolences on the death of my partner’s father, and let us know that she is getting married to her longtime partner (of more than two decades) next year — now that they can get married where they live.
My partner told me that she will write back when she is ready to “tell the world” about her diagnosis, but that she is still processing. I have no idea when she will be ready, especially since she hadn’t written back to her friend in more than two years.
After much soul-searching — because I try to respect my partner’s wishes however I can about disclosing her condition (one reason why this site saves my sanity!) — I wrote to the friend, myself. I felt she deserved more than silence.
In addition to thanking her for her condolences and congratulating her and her partner on their upcoming marriage, I wrote, “There is so much I want to tell you. [My partner] has told me that she will ‘tell the world’ when she is ready, so I need to give her that time, space, and processing. I do apologize for the long silence.
“Without going into detail (I’m trying to find a good balance here) — she has been adjusting to a diagnosis she received about a year ago, after years of tests and specialists (and misdiagnoses). The good news is that her MRIs have been holding steady. She’s also been working through a tremendous amount of emotional stuff, as have I. (As [my partner] put it, ‘It’s a good thing we’re both stubborn, because that’s what’s kept us alive.’) It’s one of those learning experiences we both wish we could have done without, but the important thing is that we’re learning.
“I wish I could tell you more, but I have to respect her wishes. I’ve shared details with [her sister], but I don’t know if anyone else in the family knows.”
That was fine with my partner’s friend, which in turn put my mind at ease. I think the hardest part for me as a caregiver is dealing with the conflict between my need to express what is going on with me, versus my partner’s wishes that constrain my communication with others.