Thursday, August 27, 2009
She became a Mormon when she was 20. She married another one of my friends, who was brought up in a Mormon family. They moved to Salt Lake City, had a couple of kids, then her husband died about 20 years ago. She's lived in SLC as a single mom with kids ever since (one daughter is married with a baby, living near San Francisco, the other still lives at home with her mom).
So, we caught up on 30 years of history. We talked and talked and talked and were practically the last diners in the restaurant when we left at 10pm (way past my usual time out on a school night!).
One interesting thing I noticed during our conversation were some of the observations she had of me and my family from the time we were hanging around together back in the 70s.
My version of the early 70s: I started getting high on pot when I was 13, in 1969. I then proceeded to spend as much of my time high as possible for the next few years. I hung around with a group of about 10-12 people that a teacher in our high school dubbed "the Party People." I cut class, was regularly suspended, and eventually my parents sent me to boarding school for my last 2 years of high school in an attempt to get me back on track academically. Not surprisingly, my parents and I had a difficult relationship during this time, especially with my father. He and I had angry battles at the dinner table often (in memory, it seems like every night).
My friend's comments about that period: my parents were cool and very laid-back. I had a good relationship with them, the best of all her friends with their respective parents. She was impressed there was no tv in our house (the tv broke when I was about 9 and my parents didn't buy one again until I was in college).
I get along wonderfully with my parents now. I see them every two weeks (they live about 2 hours from here) for a social visit and to help with bill paying, balancing the check book and the like. They are wonderfully supportive of Skip's and my relationship. They are big fans of me, for which I feel quite lucky, especially where things were not so great between us in earlier years.
My friends comments got me to thinking about my relationship with my parents during my teens: was it really as bad as I remember? I suspect not. Sure, when I got suspended or got caught smoking dope, there'd be a confrontation about that, probably multiple confrontations. And, my father and I argued at dinner pretty regularly. But, I also remember lots of good times in our everyday lives. My father always had projects going and I often helped him out (especially when I was the last kid left at home, being the youngest with 2 siblings off at college). One weekend, he and I planted 2500 Christmas and fruit trees together (no, that is not a typo, it was 2500 seedlings). He had a huge garden and each July we'd have a big strawberry jam-making session with bread and butter pickle canning later in the summer. My parents were always welcoming to my friends who came to visit.
Interesting how an evening's conversation can supply new information and perspective to help shine a different light on one's personal history. The memories haven't changed, but my emphasis on one side of the story has shifted a bit as a result.
Wednesday, August 26, 2009
Well, I'm glad I did join it. I have reconnected with old friends from high school and college as well as friends from even earlier in my youth. It's helped me find people whose whereabouts I did not know, so without a tool like FB, I'd probably never have found them.
It also gives an easy way to keep up with work colleagues I consider friends and friends from prior jobs. I found out an old friend had adopted a second child, saw baby pictures from a work colleague's new addition right away and got to see some nieces and nephews all grown up (that I haven't seen in person in a decade).
With MS in our lives, we have become increasingly isolated over the years. We're quite the homebodies and don't get out all that often. And, I must confess I'm not the best at keeping up my side of friendships. FB gives me some connections to friends, both old and new, that would be much harder to handle if done entirely by email, phone and in-person visits.
The best thing to come out of FB to date is a connection with a friends from my high school days whom I haven't seen in over 30 years. She lives in Salt Lake City now but is now back in Massachusetts to visit her parents and siblings who are still here in this area. (Did I mention before that I live in the house I grew up in, so I am still here, too!) Tonight, we are taking her out to dinner. I am so excited at the prospect of reconnecting with her!
Monday, August 24, 2009
Skip's having some skin breakdown, probably prompted by an inability to use our regular cleaning routines in Maine on vacation and the recent hot, sticky weather we've had. We do have air conditioning, but Skip spends a good amount of time outside each day so is feeling the heat at times. We've had a wound nurse in to evaluate and have a game plan to correct the problem, but there's pain while everything is healing.
I am a bit worried about her skin. This is the worst breakdown she's experienced, and I know how easily skin problems can escalate into major problems. So, we're keeping a very close eye it.
But, the pain is the biggest concern I have now; the discomfort she feels pretty much all the time. I can't fix it. I can keep her skin clean and apply salves and give her Tylenol, but that's it. It's frustrating that there's nothing more I can do. It creates a helpless feeling for me that's different from dealing with the losses of physical capability. For those, I've been able to apply problem-solving capabilities to figure out how to manage the new reality. Here, all I want to do is stop the pain, but with very limited success.
Do others feel that pain is a different animal from other MS issues?
Monday, August 17, 2009
At first, I was going to write about the need for the caregiver to care for herself. But, if you've ever prowled around any web sites about caregiving or read any books about it, they all touch on this subject and I don't have anything new to say about it. In fact, I recently read a book on caregiving, A Family Caregiver Speaks Up, and Suzanne Mintz, the author, had an unbelievably dead-on comment about why caregivers need to take care of themselves that pretty much says it all from my perspective:
Your own good health must be preserved if you are going to go the distance as a family caregiver. Your own good health is the best present you can give your loved one, and yourself.
Unfortunately, I'm not so hot at taking care of myself. I'm 53, deeply entrenched in middle age, and I've got some of my own health issues to deal with. But, I try to ignore them as best I can. Honestly, though, this isn't because I'm a caregiver to Skip and don't have time for myself. I've never been much for taking care of myself, as in eating healfully, getting plenty of exercise and the like.
This brings us to the title of this post: maintenance vs. enhancement. Right now, I'm maintaining my own self and maintaining Skip's physical self. I take care of her medications, help with all the tasks of daily living (you know the drill), prepare meals, and so on. I do all these for myself as well. But, neither of us is looking at improving or enhancing our physical beings.
This is where we need to take action. We need to move from just maintenance into enhancement. Unfortunately, change is hard. And Skip is not an embracer of change. She says with great frequency, "I hate change," and means it. Change has not been her friend, after all, since it usually means some other MS loss. She won't resist change, though, if I push for it.
What would I like to change in order to enhance our lives? I'd say the two key items are: healthy eating and exercise.
All my life I've been fat (this is a descriptive word, not an epithet, in my dictionary). As a kid, my parents tried to get me to lose weight, but always without success. When I was in high school, they stopped trying (at the request of a counselor I had at the time). In college, I began reading about the fat liberation movement (this was in the mid-70s, when there were many movements afoot), and began to look at size discrimination as an issue of society rather than an issue of my size. I didn't believe I needed to change, society needed to learn to accept me.
Well, this was all well and good until I started to get older and realized that I was using fat acceptance as license for me to ignore the need for healthy living. Something triggered inside me, though I'm not sure what. The pain of staying the same suddenly got worse than the pain of making changes. With a friend, I joined Weight Watchers, completely changed my eating habits, began exercising and, over the course of 2 years, dropped 100 pounds. Unfortunately, I've gained 2/3rds back.
So, how to trigger change? How to shake myself out of my settled-in ways and embrace new habits? This is my current struggle, and, as yet, I don't have any answers.
Monday, August 10, 2009
Skip has a new physical therapist, who was coming at 4pm on Sunday to show us some range of motion exercises for Skip's shoulders. I suggested we head out to the patio as soon as she was done. Skip thought it was a great idea.
It was another unseasonably cool day here yesterday, so perfect for sitting outside. In fact, we kept the doors open all day and the a/c never came on as the outside temps were so low (70ish F).
We got outside around 5, Skip had a few cigars (small ones), the pups lazed at our feet on their big bed and I read aloud from Harold Kushner's book. Around 7, we all trooped back in the house and I made a simple dinner of grilled chicken thighs, garlic ciabatta bread and salad.
Great conclusion to a wonderful weekend.
Sunday, August 9, 2009
I've been part of an MS Caregivers Support Group for ~3 years. It meets monthly, and I make a point of going unless I have an unavoidable conflict. There are usually about 4-5 caregivers and a facilitator, though last Thursday's meeting had 8 caregivers in attendance.
The group is funded by the National MS Society who pays for the facilitator's time. He is a psychologist who is part of the group of practitioners that participates in the weekly MS Clinic I wrote about last month. I had heard of this group while in the waiting room on one visit or another, but it actually took me years to decide to find out more about the group and start attending. I think the trigger for me was finally acknowledging that I was becoming overwhelmed and really needed others to talk with who were facing similar issues in their lives.
During last Thursday's discussion, one of the caregivers mentioned that she really had wanted to come that evening because she knew we would understand what she's going through; that level of understanding was absent in her interactions with others who have never been caregivers.
That's how I feel about the group. Skip and I have understanding and supportive friends whose company and friendship we need in our lives. But there's nothing like the understanding you get from someone who is another MS caregiver. It's great to be able to meet with the group, do a roundtable of "checking in" and be able to talk about your current state in life, hear what others are going through, and have a free flow of reactions and dialogue based on whatever we each bring to the table that day.
I wondered how many caregiver support groups, especially those that are for MS specifically, exist in the US. I went to the NMSS site and drilled down from there to the new england chapter site. After about 8 or 10 clicks, I found two support groups in the greater boston area, including the one I attend. I wondered if other regional sites contained such info. I searched in California, trying out the LA and San Francisco area chapters, then the Connecticutt chapter. I found stuff for caregivers, but no support groups specifically in any of those three sites. Perhaps a direct call to a specific chapter could yield information.
On the national NMSS site, in the section for friends and family, the sidebar navigation included links to some national caregiver sites. I went over to two of them, the Well Spouse Association and Caregiver.com. The latter is totally commercial (IMO) and looked like it was set up to sell a particular book and seminars to support the vision of caregiving outlined in that book (the seminars had a modest cost for enrollment). The Well Spouse Association is a foundation established by Maggie Strong, who wrote Mainstay, about her experiences as a well spouse to her husband with MS. This group has support groups all around the country that are sponsored by volunteers. It listed a couple of contacts in Massachusetts. There are definitely possibilities out there to research for support groups, especially if you live in a major metropolitan area in the US. The WSA-sponsored groups, though, won't specifically concentrate on MS.
Friday, August 7, 2009
I grabbed her cigars and paraphenalia (lighter, cutter, ashtray) and we headed out to the patio. We have a big dog bed for the pups to use on the patio and I set it up at Skip's feet. I got her cigar lit and the dogs and I settled in with her for a bit of relaxation.
We sat under the gazebo enjoying the time together. Lovely temp (well, I thought it was a bit cool, but it was great for Skip). Birds chirping, red squirrel nearby scolding. We live in a quiet neighborhood, so not much noise from the street or nearby houses to intrude.
During vacation, I'd started reading a new book that I thought Skip would enjoy as well, Harold Kushner's Overcoming Life's Disappointments. I was reading it aloud to her at bedtime on vacation but we hadn't yet finished it. While we sat on the patio, I read her another chapter. I enjoy reading aloud, I love Harold Kushner books and this book is definitely one with plenty of interesting content for both of us.
We only sat out for an hour or so, but it was lovely and relaxing. A wonderful way to start the weekend.
Wednesday, August 5, 2009
"Silly humor" can help defuse rage in a number of ways. For one thing, it can help you get a more balanced perspective. When you get angry and call someone a name or refer to them in some imaginative phrase, stop and picture what that word would literally look like. If you're at work and you think of a coworker as a "dirtbag" or a "single-cell life form," for example, picture a large bag full of dirt (or an amoeba) sitting at your colleague's desk, talking on the phone, going to meetings. Do this whenever a name comes into your head about another person. If you can, draw a picture of what the actual thing might look like. This will take a lot of the edge off your fury; and humor can always be relied on to help unknot a tense situation.
The underlying message of highly angry people, Dr. Deffenbacher says, is "things oughta go my way!" Angry people tend to feel that they are morally right, that any blocking or changing of their plans is an unbearable indignity and that they should NOT have to suffer this way. Maybe other people do, but not them!
When you feel that urge, he suggests, picture yourself as a god or goddess, a supreme ruler, who owns the streets and stores and office space, striding alone and having your way in all situations while others defer to you. The more detail you can get into your imaginary scenes, the more chances you have to realize that maybe you are being unreasonable; you'll also realize how unimportant the things you're angry about really are. There are two cautions in using humor. First, don't try to just "laugh off" your problems; rather, use humor to help yourself face them more constructively. Second, don't give in to harsh, sarcastic humor; that's just another form of unhealthy anger expression.
What these techniques have in common is a refusal to take yourself too seriously. Anger is a serious emotion, but it's often accompanied by ideas that, if examined, can make you laugh.
The first visualization strategy does not sing to me. The second section, speaking about cranky people feeling that things should go their way and not necessarily being able to handle it well when things don't is more relevant. But, again, the strategy to deal with it does not resonate well with me. I'm not that great at visualizing.
The last paragraph, though, is dead on. Anger is caused, quite often, by taking yourself too seriously, giving yourself more importance than the object of your anger. Humor, by definition, requires that you not take things too seriously, but instead see their aburdity, their silliness, their ... humor.
When I am not too absorbed in my crankiness, but have a part of my mind standing a bit apart and observing what I'm doing, I can often see that my crankiness is caused by taking myself too seriously. That's when I have a chance to ask myself why I think this issue is such a big deal. Whether I use humor to skewer my self-importance and expose the absurdity of my reaction or some other tool, this self-awareness is a key way for me to slow down cranky reactions.
Tuesday, August 4, 2009
As you might imagine, it wasn't possible for Skip to operate this on her own. Even if the doorknob weren't an impediment, she'd have to back on in order to close the door and gate. The strength required for the gate manipulation would have been more than she could manage. But, with all that said, the elevator was a great boon. The house was set up so that the bedrooms and kitchen/dining/living room were all on the top floor (some of our friends theorized this was to take advantage of the superior view on the second floor). Clearly, none of this would have been accessible without this elevator.
Sunday, August 2, 2009
I turned 53 on our last full day in Maine. Earlier in the week, some friends had discovered a lovely restaurant in a nearby town that was on the water. They'd enjoyed a great lunch sitting outside by the water and thought it would be a great spot for my birthday dinner. Unfortunately, the elements didn't cooperate for dinner. It was a bit rainy, very muggy and buggy. Fortunately, the food was good and the company better.
The rental house had a floating dock that was accessible by wheelchair. We spent 3 or 4 afternoons relaxing there. It was set up with a round table and umbrella, which was important to keep Skip out of the sun. I'm not sure what causes it, perhaps one of the many pills she takes, but even very little sun can cause her skin to burn and blister, so we needed to take extra precautions for her.
The water was swimmable for those who could get down the ladder into the water (this was not the kind of ladder one finds in a swimming pool; it was a regular wooden ladder with most of the supporting half cut off and screwed into the dock. It was an odd setup but the wide steps and angle of the ladder made it easier for us middle-aged, and in some cases, full-figured, gals to get in and out of the water.). At the dock, the water was a bit over 5' deep, so easy for me to stand in (I'm almost 5' 11").
Sometimes, we'd be joined at the dock by the 4 labrador retrievers in our party. They were rambunctious and joyous, delighted at having the chance to swim. Occasionally, two of them would run off for a bit, but they always came back, seemingly none the worse for wear. Our two pups, Ruby and Sally were always at the dock with us.
Skip hoped the dogs would enjoy swimming. Our previous dachshund, Sadie, needed no invitation to swim. If Skip was in the water, she would jump in and swim to her side. When I went into the water in Maine, though, neither dog showed any desire to swim to me. I briefly gave Sally the chance to swim on my first foray into the water and she clearly indicated it wasn't to her liking. Our last day on the dock, I had Ruby and Sally with me on a float, while I waded near the dock. Ruby was her usual placid self. She sat/reclined on the float in exactly the spot I'd placed her. Sally wandered around on the float, going to the edge in various spots, leaning over to examine the water, taking an occasional drink. She got too close to the edge at one point and slipped right in. I saw her sink through the dark pond water and had a brief millisecond of panic. Panic ended when she broke through the water's surface and grabbed for me, trying to climb up my body so she could get completely out of the water. With that, I put both dogs on the dock and didn't put them on a float again.
Before we got to the rental and saw the actual layout at the water, Skip had planned to swim. She bought a mask and snorkel for peering into the water, swimming attire, and had great hopes that the dogs would swim in after her, just like Sadie. Reality, unfortunately, couldn't support her hopes. The banks of the lake were deep and covered with brush, and the lake's bottom was quite mucky near the edge. The labs were able to navigate the banks, but it wouldn't work for Skip. We had hoped to take advantage of the boat landing just a few hundred yards away, but no swimming was allowed there. It was very disappointing for Skip that she couldn't swim.
Living With Able-Bodied People
I posted a bit about this during our vacation. Skip and I live with just each other and our two dogs. I work from home. The only in-person contacts we have with others during the week, in general, are either MW, Skip's aide, who typically works 2-3 half days/week and medical providers, such as the nurse who comes to check Skip's ankle. Our weekday routines revolve around Skip's care and my work schedule. For our two weeks in Maine, we were with 4 able-bodied friends who were each independent and had no caregiving responsibilities.
At home, I think our routines are productive and work well for us. Our lives are challenging but manageable. In Maine, our friends modeled what life can be like for those who don't have Skip's health problems to deal with day to day. I had a strong mix of reactions. I was saddened, thinking of all that Skip was missing in the mornings with our friends because her morning routines for cleaning/toileting/dressing took so damn long. She was never able to experience the casual chatting and coffee out on the deck in the mornings. I was often grumpy about helping her, in part because it was more challenging in the rental house, but even more because I wanted to be out on the deck drinking coffee too. I had some unproductive feelings of jealousy and self-pity but managed to get past that fairly early in the vacation.
I think the bottom line for me was this: time spent in the house with able-bodied people made me feel more strongly the price we pay for Skip's disability and how deeply it permeates everything in our lives. I was surprised about this effect; it had never occurred to me that I'd feel this during our vacation.
Our friends were great during the vacation. The able-bodied among us all had to do a bit more because Skip couldn't help with meals/dishes or schlepp stuff down to the dock and so forth. Everyone pitched in. And, they were all happy to help Skip when she needed something.
* * * * * * * * * * * * * * *
Skip was very sad to bid the water goodbye. She loves being by the water and hopes we can someday live beside a lake. I'd love that for someday, too.
Saturday, August 1, 2009
As it happens, events conspired that the entire group had good reasons for leaving on Friday, so we all packed up in concert, making the cleanout of the kitchen and the general housekeeping before departure a good collaboration.
All in all, it was an excellent vacation. Lovely location, mediocre weather, great friends, good food, relaxing time. I'm pretty set in my ways, so it took some time adjusting to a houseful of people, but it was definitely worth the adjustment.
Thought I'd post a bit about some of our vacation ....
Because we didn't have all the advantages of home for Skip's care, her day-to-day maintenance was harder, but not insurmountably difficult. And, it was definitely worth it so that we could be there in that location and with our friends. Every day, I found small ways to improve the process. By the time we were ready to leave, we'd developed a good routine that was harder than at home, but workable.
Unfortunately, the overly high bed proved to be our biggest issue for two reasons. First, our patient lifter with Surehands body support attached could not get Skip high enough for me to transfer her onto the bed alone. As a result, we had to draft our friends to get her up onto the bed each night. Our friends were always very willing to help and did a great job. We worked well together to find better ways to work it when some of the transfers, especially the early ones, had somewhat awkward results. Unfortunately, on our second to last night, I allowed the patient lifter to become unbalanced while moving Skip to the bed and she fell to the floor, hitting her head on the bedstead on the way down. (I did not have the base of the lifter opened wide for maximum stability, so this was totally my fault.) After making sure Skip wasn't too badly hurt, the group banded together quickly to figure out how to get her off the floor and onto the bed by using a sheet to lift her. (Skip did get a good-sized egg on the back of head, but the skin wasn't broken. Fortunately, one of the friends with us is a doctor and she was able to give Skip reassurance that her injury was relatively minor.)
The second problem with the bed height concerned hygiene. Without getting into too many details, suffice it to say some of our daily hygiene routines are conducted with Skip on the bed before she gets dressed. Without being able to get on the bed during the day for this routine, cleaning was much more difficult.
The patient lifter wasn't quite high enough for a clean transfer onto Skip's power chair. However, with the lifter I could get her positioned at the edge of the seat and then use the waistband of her pants to pull her onto the cushion. It usually required a pull, drop lifter arm a bit, pull again to pull her completely on. This resulted in some major wedgies early on, but I eventually got the hang of it and wedgies were kept to a minimum.
About 30 minutes from our rental was the town of Rockland, on the Maine coast. We made a couple of trips there for some shopping, both of which were pretty frustrating. Rockland has a lovely main shopping strip, filled with a variety of galleries, eateries and speciality shops to appeal to tourists such as ourselves. All the stores were on street level, but most were inaccessible because they had one step up to get in. How hard would it have been for all these stores to have slight inclines from sidewalk level to entry? The best shopping for Skip was the store connected to a small art museum, where she bought some Maine books. When only about a third of the shops had ramps in versus a step up, my whole attitude about the area was impacted. I certainly did not want to give any business to the folks who couldn't bother to make their shops accessible to Skip or other wheelchair users.
The next day, we went back to Rockland to visit a large antique store we hadn't gotten to the day before. Skip loves antiquing. We've found that small antique shops are usually cluttered and all but impassable for wheelchairs, so try to find large shops with lots of dealers. This gives variety and, usually, better accessibility within the shop. Even with our GPS, it took a bit to find this out of the way shop. When we got there, we found it was indeed a large, group shop. Unfortunately, the accessibility was spotty, with lots of level changes from room to room within the barn building that housed it and, more importantly, it was very cluttered. Admittedly, Skip is quite a good navigator in her chair, but I spent most of the time gritting my teeth, worried that she'd have a run-in with some display or another. About 10 minutes in, while rounding a corner, her left pedal caught a small bookshelf loaded with glass and china, knocking a framed picture on one level over onto china cups and saucers. Arrghh! Miraculously, nothing broke, but my patience was pretty frayed and I hovered like a nervous mother hen until Skip finally gave up and we left. I feel badly for her in these situations. She can't get there without me taking her, but I'm pretty cranky while she's there so it can't be much fun for her.
While buying the Maine books at the museum shop, I chatted with the cashiers about the weather. Two facts they related that pretty much crystallize the weather on this vacation: this was the latest point in the year that an 80 degree F temp had not been hit there in over 150 years and, regardless of the August rainfall, this was already the wettest summer in history for that area. We had only a few days of the 13 we were there that were beautiful end to end. But, we also only had a couple dreadful ones. Most were cool, cloudy and muggy. While nicer weather is always better than clouds and rain, our vacation didn't hinge upon it, so we were lucky in that regard. We did take full advantage of the lovely days, hanging out on the dock.
Well, this post has gotten quite long, so I'll wrap up the remainder in a second post tomorrow.