Reminders
As the end of October creeps closer, my mind keeps returning the events of last fall. Another big reminder showed up in the
New York Times, in an
article detailing a psychiatrist's pain over having a patient commit suicide. I was able to keep emotional distance from the article's content until the last bit, where the doctor speaks to the patient's mother.
After she left my office, I recalled a conversation I'd had with Carlos some time back. It was just after his first suicide attempt, on his initial appointment with me.
He was relieved that he had not succeeded in killing
himself - a reassuring sign - but he also said that if he had taken his own life, he was sure that his family would be sad briefly, but that they would get over it and eventually be happier without him. If only he knew how wrong he was.
During the days when K was most ill, she believed that I would be better off if I stopped loving her. Not only was I going through the pain of her illness and trying to hold us together, but she was willfully trying to shove me away for my own protection. It is a sign of how ill she was and how distorted her thoughts were during that period.
Her distorted thoughts also had convinced her that I would be better off if she killed herself, even if I was unable or unwilling to admit that to her. Writing this, I feel fear, pain, grief, and a sense of the world closing-in coursing through my body.
K was wrong! My life wouldn't be better without her. She's the one who keeps me grounded and makes me happy. She's the one, who buys me outrageously
expensive chocolates from France, and the company makes Halloween witch calls to let me know the chocolates are en route. She the one, who brings out my playful side and tells me that I'm cute. (Cute isn't traditionally used to describe a 6'2" woman.)
Again, these memories have been wiped from K's mind through the drugs and ECT. There are times when I believe the amnesia is good, but it also means I can't share these thoughts with her. She prefers not know or be reminded of the weeks when she was ill. I understand her desire to forget, but I often feel as if I am alone in working through my own pain and anger.
Throughout the worst periods, from July to December 2003, I did see a psychiatrist for therapy to handle the stress. She was a useful sounding board in the day-to-day challenges with the illness. I never did go on anti-depressants. Around the time it seemed as if they would be necessary, I began to workout regularly and the meds no longer were needed. She kicked me out on New Year's Eve and said that I was fine, but I was welcome to return if I found it necessary.
The therapy sessions didn't necessary help with my anger with bipolar disorder, as at that stage I didn't have enough time to become angry. Today I am angry about how the disease has affected our life and I mourn the pain K and I have both gone through. But it doesn't dominate my emotions. There are times I wish K were willing to go through some of these memories with me, but I understand why she wants to keep the door closed on the memories.
Returning to my original thought for this post, the illness convinced K that she was worthless and I would be happier alone. She had her death planned, but never acted on those plans for fear of hurting me more. The meds have fortunately moved her away from those thoughts and her self-worth is returning. It's my turn to learn how to move away from the memories and pain.
Caregiver's Bill of Rights
Most material for caretakers concentrates either on the model of the elderly spouse or adult child/elderly parent scenarios. Very little information appears to be available for younger partners caring for mentally ill partners. The
Bipolar significant Other site seems to be one of the few with extensive resources for partners. However, K sent me a link to some information this afternoon.
Here's the
Caregiver's Bill of Rights.
Caregiver Bill of Rights
I have the right:
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if s/he were healthy.
To get angry, be depressed, and to express other difficult
feelings occasionally.
To reject any attempt by my relative to manipulate me through
guilt, anger, or depression.
To receive consideration, affection, forgiveness, and acceptance
for what I do for my loved for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the
courage it has sometimes taken to meet the needs of my relative.
To protect my individuality and my right to make a life for
myself that will sustain me in the time when my relative no longer needs my full-time help.
To expect and demand that as new strides are made in finding
resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
-Jo Horne
This bill of rights is focused only on the elder caregiver, but the caregivers for other illness can adapt it as necessary. Caregiving is not limited to only age related illnesses.
Brief Update
I realize that I've been absent for a week, but there's been so much going on that it's been impossible to update.
The dig in the basement has begun. It's going smoothly and the house doesn't appear to be on the brink of collapse, but it's tiring for us. The upstairs is filled with a damp, moldy dirt odor. I went downstairs briefly last night to leave some plans for the contractors and was gagging on the odor by the time I made it back upstairs 10 seconds later.
We've been handling the stress by trying to make our dinners very simple. Last night we went out. The night before we had microwave dinners. We prefer to cook, but we're trying to recognize our limitations while the house is torn apart.
K is doing great. She's handling the construction stress very well. She's also taking a training class this week and her routine has been disrupted. Instead of getting her daily ride to the office from me, she has to take the subway to another building. After the first evening, she was exhausted. However, last night her energy levels seemed to be returning.
It appears as if she back even healthier than she was prior to her heart attack two years ago. Her ability to cope and manage stress is improved, she is more aware of her general physical health, and she respects her limitations even when she doesn't like them.
Recently, I keep writing about how well things are going for us. Not always, but often of late. Things have been improving over the past year, since K's hospitalizations and it seems recently we've reached critical mass on the good things and everything is beginning to tilt to the positive. I like it.
Progress Report
I have noticed that my latest posts have had more to do with our day-to-day life than K's illness or they have been about integrating K's illness into our day-to-day life. I'm slowly feeling as bipolar disorder does not run my life or our life, though it continues to require constant accommodation.
Returning again to last year, we are quickly approaching the anniversary of K's first hospitalization. ECT wasn't working yet, but her disorientation and paranoia were growing. Her parents had come to help out for about 10 days and their assistance was invaluable. Never underestimate the power of having dinner on the table when you walk in the door. Despite the benefits that their presence had for me, it was having a negative impact on K.
I wrote a bit about her family in August in this
post, and you can see why it may have been stressful for K to have them around the house. She wasn't able to discern reality from her imagination. During her less lucid periods after ECT sessions, K worried that her life with me was a dream. Instead of waking up in our house, she feared waking up back in her old neighborhood in bed next to her ex-husband. (At this point, anyone who knows K drops their jaw in shock at the knowledge that she had been married.) Finally, after her parents had been here 12 days or so, I had to encourage them to leave. It was their departure, which necessitated K's hospitalization.
K never would have agreed to hospitalization if any possible out had existed. One of the most painful times of this period was trying to convince her that it was necessary to go into the hospital. I would have her 90% convinced and then the fear would take over again. Finally, I had her convinced that she should go in. That evening, we went next door to a party.
Our neighbor, also a close friend, had been talking to one of her friends regarding K's situation. I was being stretched, pushed, and stressed past my limits dealing with K as sick as she was. Tension gripped each of my nerves and muscles as I worried about what K might do next.
The neighbor's friend has his own personal history dealing with the psychiatric community. He, originally a she, had been hospitalized for 3 or 4 years as a teenager for gender realignment or something of the sort. Basically, she made her parents uncomfortable and they locked her away to learn to be a girl. Part of the therapy included putting on make-up, talking to boys, and other girlish pursuits. Didn't work. With this history, the friend felt that a psych ward was the last place where K should be.
Instead of being able to forget about K's illness, that evening I was accused of making decisions for K that suited my personal agenda without taking K's best interests to heart. I was told I was too personally involved to make unbiased decisions. This friend was willing to take care of K at home and make the hospitalization unnecessary. I was livid. K immediately began grasping at this possibility as an escape from hospitalization. I couldn't see that it would solve the problem that K was becoming a danger to herself and too sick to manage at home. What I struggled with the most, was that someone outside of the situation had the audacity to confront me with accusations of making decisions to fit my personal agenda. If anything, my own health was being risked by the burden of continuing to try and care for someone who needed professional help.
It's almost exactly a year later and my blood is boiling as I type this. K doesn't remember the incident. All she knows is that the neighbor's friend and I had a falling out regarding K's care. At the time, I was seeing a psychiatrist (so I could survive K's illness mentally intact) and she pointed out to me that the friend appeared to have more of a personal agenda than I did, as he would have expected payment for the nurse duty.
K checked into the hospital the day after the party. I had convinced the attending physician at the psych ward to give me her cell number, so if anything happened over the weekend, we would be able to bypass the emergency room and have K checked directly into the hospital. I called her that Sunday afternoon. She took care of everything even down to ensuring K had a private room. All K and I had to do was pack her bag and show up at the hospital.
Being able to take K directly to the hospital knowing that they were expecting us relieved a lot of pressure from us. It was incredibly painful and I went home that day and cried my heart out. But it was the right decision. K needed more help and watching than I could provide. Nor would it have been fair to have expected I could give her the care she needed. It was not a failure on my part that she went to the hospital; it was the right decision to keep her safe.
Today I am able to look back and remember without my eyes welling with tears. K doesn't remember and does not want to remember. Occasionally she asks about it, but she does not want to details of her illness. She asked me today how many times and how long she was hospitalized. Her memories of at least 8-10 weeks last October and November are gone.
I credit her return to health to the doctors, her therapist, the partial hospitalization program, and her medications. Also, I have to acknowledge that our relationship gave her something to live for. I'm not being egotistical, but only writing what K tells me frequently.
This anniversary is a good one. Last year was a low point that I hope never to see again. That I/we can celebrate a year's distance from it is a success.
Normal or close enough
I'm teleworking today, ostensibly to start out the contractors on the Big Dig. Well, that didn't quite happen, as we don't have the permit in hand yet and the contractors weren't quite ready. But K and I are ready!
The weekend was spent cleaning out the basement. It didn't have too much stuff in it, as the space is fairly nasty. But still, with the dining room torn up and the contents scattered around the house, losing the basement space is having an impact. We have shit piled everywhere. The cleaning crew has been forewarned that they will have to clean around it all tomorrow.
I stayed home to telework, as K finds it stressful to deal with contractors. And, I have had contractors in the house the entire day, despite the basement work not having begun. The chimney guys had to return. Saturday night, we went out to dinner and came home to take some much needed downtime, after cleaning the basement, curled up reading in front of the newly lined fireplace. Instead of the smoke gently swirling up the chimney, it backed up and filled the entire house with nasty wood smoke. K was livid; I was irritated. Either way, today I called them to come fix it. After spending 90 minutes in our living room, they will have to return on Friday to finish the job.
Then, the table guy came to quote me on refinishing the dining room table. Price is great, but he would like to work on it in the middle of the living room, as he is living with friends and currently has no workspace for his stuff. Lovely, in between the basement being dug, the chimney being fixed, the dining room being drywalled and painted, and crap throughout the house, we are now going to have a table refinished in the middle of our living room. Surprisingly, K did not lose it, when I told her what he wanted to do. All she did was scold me for letting him onto the second floor of the house. Some silly security thing she has going on.
Then the basement contractor stopped by and now the African architect, who K can't understand, is coming tonight to look at the basement again.
Any case, our home life is in perpetual chaos. K is at work and doing fine. A little voice in the back of my head wonders if she just doesn't want to stay at home with all this going on, but no, I know better. She's back to her pre-heart attack life and doing well. I know the ups and downs will continue, but being able to go through the upheaval and carry on with her schedule.
It's a relief being able to let go and not constantly worry. I have to relearn how to not worry, but my "whatever" attitude is quickly returning. It's good to relax.
Snapshot
Ever since we moved into our house five years ago, I've had a vision of a home office in the basement. The office would have exposed brick walls, bright halogen cable lights, stain and polished concrete floor, an area rug with bright colors and modern design, and sleek office furniture.
For five years, ridicule and mockery have been directed at me for my vision, because the space needs a little work. The room, which I envision as my office, currently has a dirt floor, cobwebs hanging from the ceiling, exposed ceiling joists, plumbing coming down from the bathroom above, some of the bricks need replacement, and there is a strong dirt/mold smell permeating the entire space. The kitchen floor, directly above, has a few dryrot issues and looks as if it will collapse at any moment. The finishing touch on the room is that of the three window openings, of which only one actually has glass in it. The other two are barely covered by plastic.
Monday, the Big Dig begins. The basement will be 18" deeper with a 7' ceiling. The walls will be sandblasted and repointed to replace disintergrating mortar. The concrete will be poured, locking all the nasty smells and mold deep into the earth. My vision for my office is moving from fantasy towards reality. Then I was brought up short.
As the office becomes more of a reality, K told me that I no longer could refer to it as "my office". Rather it is to be called either the "home office" or "our office".
My dream is being co-opted after the years of ridicule. Naturally, I protested, citing historical evidence as justification for keeping the title of "my office". I was ignored.
It went so far, as to have K download architect software and draw a blueprint of the basement. The office space has an x'ed out figure, meant to represent me, showing that I will be DENIED entrance to my own office. Needless to say, K was cackling as she showed me her drawings.
The battle continues as we discuss the appropriate label for MY office. My co-workers have offered a number of suggestions as ways to subtly suggest reminding her of the original name, such as an 8 foot neon sign or having the computer say "Welcome to L's office" every time it boots up.
Playing like this is a snapshot of normal interactions. This is how we played before the illness and we are returning to where we can do so more and more. After my posts laden with gripes and irritation, I thought it was time to share the good parts of the relationship.
Anniversary--One Day Late
365 + 1 days ago, K underwent her first session of ECT. After the first session, we celebrated that her memories were still intact and her thoughts remained clear. We didn't know what awaited us in the upcoming weeks.
I don't regret that K did the ECT. I don't know what she thinks. But, it made the bipolar more difficult to manage and added the component of confusion and memory loss. Nor did the ECT relieve that pain of her depression.
But. . . what if it had helped? What if she had woken up feeling better afterwards? What if it made it possible for the bipolar drugs to work and relieved the desperate time pressures of her downward spiral towards suicide?
Tonight, we are going to a community meeting. Not a celebration, but something which would have been impossible at this time last year.
That's enough.
Balancing
This blog would be more interesting if I wrote when my emotions were at their peak rather than waiting until I analyze and recover from any emotional upheaval. But. . . I'm unable to do that.
Part of it is a loyalty to K. I don't want to share how her rage can take over her mind and render her into someone I don't recognize. When her self-doubts paralyze her, and she no longer is the woman I know as compentent and capable. When paranoid thoughts dominate her thinking, so she can't trust me.
See the metamorphosis from my tender, compassionate, loving, intelligent, compentent partner to someone who is fearful, angry, self-hating, and who relies on me for comfort, reassurance, care, and emotional stability is the hardest part. The disease takes her away from me and I want to share the woman I know, not the ill one. I have grown to hate bipolar and mental illness. It takes the woman I love away from me, and only gives me back parts of her. Then it takes her away again with PMS or a bad day.
Reconciling those two images of K challenges me on a daily basis. She continues to improve, but the relapses remain painful and frightening. When she relapses, she accuses me of blogging her as a horrible individual, who others will hate. She can't accept that her illness becomes unmanageable at times. The shame of her actions overwhelms her and distorts her thoughts.
I try to portray our actions and my thoughts accurately. By my strong analytical side prevents me from running wild on the emotions, even when they are overwhelming me.
Past week
Things have been busy, good, bad, and stressful over the past week. K went through what we believe we PMS last week. It was hell.
Rarely does her pain force her to lash out at me. Normally, things are kept under control, and it is turned inwards towards herself, the hate, rage, anger, self-loathing, criticism, etc. Last week, she decided to share and turn against me.
The basement work is to commence on Monday. Meanwhile, the contractors have been coming over in the evening to test dig, discuss plans, look at whether the house requires underpinning or other expensive support structure as we dig deeper down. It was stressful due to the uncertainty, expense, and strangers knocking at the door every night after work. We would get inside and within moments the doorbell would ring. Schedule was shot to hell.
By Wednesday, K wasn't doing too well. She stayed home Tuesday, Wednesday, and Thursday, unable to function. A couple of those nights, she woke me up at 3 am making vile accusations as to my desire to undermine her, pushing her beyond her limits, wanting to see her die. Imagine being woken by the person you love most and facing these types of accusations. The episodes were verging on psychotic. Then, I would be able to break through and reach the real K, who would apologize.
My mother's visit constituted an additional stress on this entire week. She arrived Thursday and stayed until yesterday afternoon. K was extremely angry about the visit, though it did go well. K enjoyed seeing my mom.
K's behavior frightened and worried me, and angered me. I was pissed to be treated this way. How can I continue to trust someone, when there are times when trust and intimate knowledge will be used against me? My only response is to believe that these episodes won't occur frequently.
Friday, K had an appointment with Dr. X. He's been doubtful of PMS and it's influence before or so it's seemed, but this time he responded seriously. He prescribed 12.5 mg Paxil CR for her to take during PMS. She should start when the first symptom appears and stop when it's over. Apparently studies have shown that it offers relief for PMS symptoms.
K's sleeping is improving again and she's at work today. Yesterday we had the day off. The visit with my mother went well and only stressed K out somewhat not as badly as it could have been.
Next big stress is cleaning out the basement by Monday in preparation for the Big Dig. Contractors have offered to help out, but we have to do most of it. My only hope is it won't be too messy, since they are taking out damp earth. I'm also hoping that no underpinning is required on the house. It's looking pretty good thus far, but a few more test holes need to be dug.
I keep focusing on improvements, but last week was a challenge. I feel fine again now, but I fear repeats and don't know what to do. K and I did compromise. She didn't want to return to Dr. X until 2 months have passed. I asked her to make an appointment in a month with the intention of canceling it, if it proves to be unnecessary. We both like seeing Dr. X, but seeing him less frequently reassures her that she's getting better. She is, but the lapses are hell on us both.
Difficult
K's being pickly and difficult this afternoon. Talking to her sets me on edge, because I don't know what will make her snap at me. She stayed home today to catch up on her sleep, but somehow she remains grouchy and tired.
Even though this is fairly low key on the scale of bp problems, I still don't like it. Nor do I have a good solution for dealing with it.
Update
I realize that I bitched on Saturday and then disappeared for two days. The weekend was busy. Much of the time was spent trying to clean the dining room and living room to make it even possible for the cleaning crew to get in there today. I did almost all of it, because K slept much of the day Saturday and didn't function Sunday afternoon.
She's in a foul temper today, which I can't quite figure out. She attributes it to a lack of sleep; she got about 5 hours last night. But she's struggling with rage and anger, and I can tell she's fighting to hold it in check and not attack me. She's somewhat successfully, but she's very stressed.
My mother's coming this weekend, and I think that has her pissed off. She doesn't want to have to share her weekend, which I find to be a selfish, unrealistic attitude. We don't spend much time with any of the parents. Needless to say, I don't want to reopen these discussions, especially after the
one we had two months ago.
When K is unreasonable is when I begin to get tired and doubt my ability to go through this day after day, year after year. I don't want to deal with someone who's in pain and angry. Lashing out at me, doesn't lessen the agony for her.
No words to express my desire to escape into a ball right now.
Mixed
K and I had a good time last night. We went out and had a lobster dinner and even went to a lesbian bar for a bit. Just a catty remark, all of the women were round. Somehow I don't understand it. But. . . I should behave and stop being non-pc. Of course, we only stuck around till 10 pm, which is pretty early on the bar scene, s0 not too many people were out yet.
This morning, tensions arose. K got got irked about something that I didn't think really impacted her. I couldn't understand why she even wasted her energy complaining about it or getting riled up. I should be more specific.
Our neighborhood is gentrifying and has a very diverse population, racially and economically. There are times when the culture clash can get to both of us, but neither of us desires to move towards a more homogeneous, yuppie neighborhood. That said, we do have to be more tolerant than we wish to be at times.
Annoyances, such as public urination, noise, trash, drug dealing, etc., can get to us. Generally, K gets more irritated and agitated than I do. I cannot decide if it is part of her personality to be worked up more or if it is a combination of her personality and disease. Either way, I find it difficult. When she gets into an irritable mood with the neighborhood, I feel the tension between my shoulders and neck increasing.
The thing is that I don't believe she would be any happier anywhere else. The suburban car/SUV (sport-utility vehicles) culture with self-satisfied homeowners blowing leaves on your lawn with their overpowered leaf blowers wouldn't suit us either. Even the yuppies moving in manage to piss her off. Nor is she so interested (not that it is even a remote possibility) to live in a rural area. We love where we live and our house, but she gets irked and I don't understand.
This morning, she got irritated and I got irritated with her. And we weren't able to reach a good compromise. We're trying to ignore that we had a spat, but I'm not fully convinced that ignoring the problem with make it go away. I'm hoping we'll move past it without having to address it.
Week In Review
Successful week, K worked the entire week, 4 days in the office and 1 day at home. But, the at home day was planned in advanced due to disruptions downtown and there was a request for as many people as possible to telework. I made it through the week without feeling as if I would collapse any minute.
That said, the house is still a mess from last weekend's forays into demolition. But we'll spend more time this weekend cleaning and the cleaning crew is coming on Monday. I guess I should call them to provide advanced warning of the state of the house.
We made it through successfully, but there were still challenges. Yesterday, K got very tired. We ended up with another contractor stopping by immediately after we arrived home from work. Then, someone else had parked in our parking spot, which is located on PRIVATE PROPERTY. We called the police and got them ticketed, but pain in the ass! These are the specifics, but the thing is, K made it through daily frustrations or more than daily frustrations without collapsing and still going to work every day. That is cause for celebration.
It is a sign her meds are working and her management of the disease is getting better. She is able to monitor her moods and know when she needs to say "no" to things rather than going along with me. Progress.
I think she's doing really well, especially given the construction and chaos throughout the household with the home renovation. At this point, probably 90-95%, a big step from June, when I felt she was about 50%.
Her ups and downs have been minimized by the lithium and trileptal combination. Ever since she started on trileptal (late June) her rages have been muted. Also, she started on estrogen at the same time.
This is getting into female biology, but it seems to be important to female bpers. Prior to K's heart attack in January 2003, she had entered peri-menopause. It was early, but still she has a very mild form of lupus, an anti-immune disease. She figured that brought on early peri-menopause. After the heart attack and into the depression, Dr. X wanted to try hormone replacement therapy (HRT), but none of the cardiologists would go along with it given the risks for heart attacks. Finally, in June she was desperate enough and able to convince her cardiologist to let her go onto a low dose of estrogen.
Thus, it becomes impossible to parse out whether her improvements are due to trileptal, HRT, or lithium. In any case, I think the peri-menopause has significantly contributed to her struggle with bipolar. And possibly that is even what pushed her over the edge with bipolar in the first place. Who knows?
As it turns out, K will be post-menopausal in November. Menopause is going 12 months without menses. Once she hits the post-menopause, we are hoping her psychological struggles will become easier. I believe she's planning a celebration.
After watching K, I have decided that menopause is nature's way of killing off weaker women, once they can no longer reproduce. Look at the stats, heart attack, cancer, psychological problems, serious health problems are exacerbated when women hit menopause. The hot flashes, night sweats, and mood fluctuations are enough to make women want to die, if it's bad. Okay, I'll get off my soap box.
Weekend should be low-key. Lobster dinner planned tonight and that is about it on the plans.
