Pursuing Happiness

January 28, 2011

The other day, I was watching a program on how to become happier. Two of the main points made were that the more connections that you have with people, the happier you will be, and that experiences rather than acquiring “things” will lead to more happiness. I was struck by how often the life limitations of caring for an individual with developmental disabilities prevents those two things from happening for both the individual with disabilities and for their family members.

After Lauren was born we lost many friends to whom we could no longer maintain the activities and interests that bonded us. We didn’t make new friends like many new parents do when their children join the soccer team or take dance classes. We seemed to become more and more isolated over the years. I remember going to a church picnic and sitting, ignored, like three lumps on a log, while people were running off to participate in games and other activities.

We didn’t sit home and do nothing, though. We bought a motorhome and traveled to forty some-odd states with Lauren. But, then Lauren just got too big to handle in the confines of the motor home, and I was ending up bruised and exhausted at the end of each trip. We took Lauren skiing at an adaptive program in New York State. She absolutely loved it. I would stand at the bottom of the hill, freezing to death, waiting to check her after each run. She didn’t care how cold it got; she just wanted more and more. Unfortunately, Lauren developed ealry onset osteoporosis as a side effect of seizure medication and could no longer risk skiing.

So, now we are coming to a turning point in our lives. Lauren is about to embark on the next phase of her life and so are George and I. As we continue to explore ways to expand Lauren’s horizons and opportunities, we realize that we must do the same for ourselves. We hope to travel to some places we have been unable to visit due to Lauren’s limitations. We hope to be able to accept some of the invitations that friends have proffered over the years, but we have been unable to accept. And, we want to try some new things, together. George likes to fish, and golf, and ski, all of which, up until now, I’ve sent him off to pursue while I hold down the fort at home. He would prefer that I do those things with him, at least some of the time.

So, as a leap of faith, an attempt to add an “experience” to my life, I told George I’d join him on his latest ski trip….and take a lesson. One of the reasons I didn’t even consider trying sking before was the fear of injury. If I was injured, how would I take care of Lauren? At least now, we have people who can take care of Lauren if I ski off of a cliff or something.

If you know me well, you know that I don’t like the cold, or heights, or doing anything where I am not in control. So, this was a major leap of faith…far out of my comfort zone. As soon as I told George I would take a lesson, he called and made a reservation for me. No backing out now. My instructor’s name is Frosty…aw jeez.

I called a friend who knows the ski area well and she knows Frosty. She told me that she is a dynamic young woman and I’d do great. So, I psyched myself up and got out my woolies. The big day arrived and George guided me through renting equipment and getting organized. I felt like a mummy wearing Frankenstein’s boots. I clumped myself over to the ski school and waited….and waited. No Frosty. I guilted the clerk off of her phone call with her boyfriend and asked where my instructor was. “Oh, Frosty’s not even on the mountain today.” OK. Now what? Mmmmmm, could this be my out? “Aw, shucks honey, There wasn’t anyone to give me a lesson, so…..” The clerk called a gentleman wearing a ski school jacket over and asked him if he could do a lesson. He agreed. And that is how I had my first ski lesson with eighty-one year-old Alpine Jack.

Jack was a quiet little man who did not endear himself to me by asking me if I had any grandchildren. I actually think Jack is just looking for something to do to get him out of the house because he seemed a bit clueless on how to give a lesson. “Follow me down the hill.” is not what you want to hear while you have two sticks attached to your feet with no idea how to control them. I managed to figure out a few things on my own, like when one ski crosses another, you fall. And, the bunny slope is more slope than you might think. Most importantly, embrace the snow plow, it will save your life. Alpine Jack’s one compliment was that I was good at riding the lift. Enough said.

So, now that I’ve added a new experience to my life, am I happier? Well, I’m proud of myself for not chickening out. I spent a lovely day with my husband, minus the hour with Alpine Jack. And, in those few moments in which I managed to glide smoothly, effortlessly, over pristine, white snow, I caught a glimpse, a fleeting glance of the allure, the promise, that strapping two sticks on your feet and pointing them down a mountain could possibly, just possibly, result in sheer glee.

An Unexpected Trip - Home

January 25, 2011

It’s now been a week since I returned from my parent’s home in Florida. I’m still catching up on chores, and bills, and Lauren’s needs. The bonding, which the dentist used to repair Lauren’s tooth while I was away, has somehow come off. I scheduled another appointment which then had to be cancelled due to the ice storm on Tuesday. We now can’t get another appointment until February.

I had only been home for two days when my father called to ask what to do for my mother who had had a bad night and was now experiencing pain in a different area. I have nothing to tell him, nothing to suggest. This seems to be a chronic problem. Pain meds don’t seem to help very much. I checked on them again a few hours later and Mom was doing a bit better.

I find myself so torn right now between fearing that my parents won’t agree to move back home and fearing that they will. I can’t provide the care that they need from a thousand miles away. Yet, if Lauren is successful in moving into her own home in the spring, it will be the first time in twenty-five years that I will not be a primary caregiver. I will finally be able to give my husband my attention – he has had to take second place in my life for too long. It’s not just that though, I know that I need a break. I watch my reactions, my resiliency to the stresses and challenges in life and its obvious that I am not handling things well, or as well as I should. I seem to be “losing it” a lot more lately. What used to be bumps in the road now seem more like cliffs. Which one will be the one where the fall is too far to get back up again?

There seems to be so much to worry about lately. I worry about the ups and downs and details of Lauren’s move. I worry about the economy and the state of our world in the years to come. I worry about how long my eighty-seven year old father can hold up providing this level of care for my mother. He’s amazing - healthy and sharp. But he’s getting tired – I understand that. He’s usually all alone with the problem – I understand the fear of that. They are no longer active in the neighborhood, ready at a minute’s notice to go out with “the gang”. So, they have been left behind, isolated and forgotten – I understand that too. Over the years, Lauren has tried to participate in programs, camp, extracurricular programs, but her ability to participate is affected by of her challenges and she would end up on the fringes, excluded, isolated from the mainstream of activity. So now, she has caregivers and no friends. Just like my parents, she goes shopping, to her appointments, and watches TV. But she has people who care about her always hovering near. My parent’s do not. My father puts up a good front, but I think he is beginning to worry about how long he can keep this up, too.

And so these cold winter days seem to hold us all in limbo, everyone holding on until the next change in circumstances, the next crisis, the next bump in the road, never knowing if it will indeed be a bump....or a very scary cliff.

An Unexpected Trip - Part 3

January 20, 2011

Twenty-four hours before I can wing my way back to NJ (insert happy dance here), I am taking stock of the last few days.  I have been to the doctor with my mother. He very kindly spent almost an hour with us and answered all the questions I thought needed to be asked. We ruled out other possible reasons for my mother’s pain and concluded that it is indeed her back that is the problem. I asked for and she received prescriptions for physical therapy and a walker and we changed her medication to something which suits her needs more specifically. I persuaded my parents to buy a better, more supportive chair for Mom to use in their living room. I was able to get a PT appointment right away and accompany her to the evaluation and I ordered the walker. I was very busy.

I have never before found myself solely in the position of caregiver for my parents for any length of time. The things that I did for them previously had been intermixed with all of the other duties in my life. So the focus on them alone, has been interesting and enlightening. Most of the care I need to provide for my mother is exactly the same care Lauren needs. Just as I get Lauren dressed and ready for her day, I get my mother dressed, fed, and put together for each day. I prepare meals, handle her medication, deal with medical personnel, and problem solve the impediments in her life. I am trying to instruct my father, her other caregiver, on how best to take care of my mother while still encouraging her to do as much for herself as possible. The biggest difference is that Mom is a lot quieter than Lauren….and she takes naps.

We did, indeed, get that storm in NJ on Tuesday night. N pointed out to George that she would not be able to get in on Wednesday because he would not be able to go outside to plow (we have a really long driveway) since he could not leave Lauren alone in the house. So, N had to stay overnight. And, then Lauren had a seizure on Wednesday morning.

I have been sleeping, or I should say trying to sleep, on about four inches of something or other spread over a springy frame, in other words, a pull out couch. My back is now a disaster and I’m dreaming of a long, uninterrupted sleep. But sleeping at my parent’s shares the same problem as sleeping at home – the night is often interrupted. My mother is having trouble getting out of bed when she needs to during the night. She has to ask my father to help. My father has hearing problems so their conversations are loud and cantankerous. I’m just too tired to be cranky.

Unfortunately, even though I’ve been able to accomplish a lot in the time I’ve been with them, my mother really isn’t any better. I don’t know what more I can do. They need to come back to NJ. They need more help from me than I can provide in a couple of days. I have to be where Lauren is. She has to be my priority.

An Unexpected Trip - Part 2

January 18, 2011

Anxious to get back home for many reasons, I had hoped to be able to book a return flight from Florida last Tuesday morning. My parents were due to return to the doctor for a follow up appointment on Wednesday, and I discussed with them, on Sunday evening, the various things I thought it was important for them to ask or discuss with the doctor. Then I lay awake that night coming to terms with the fact that they really needed me to go to the doctor with them. They tend to defer to a doctor’s expertise and not ask questions that they are not sure they want to hear the answer to. Unfortunately, if I stay, it would mean that I would need to stay an extra two days because a major storm was supposed to hit NJ late Tuesday into Wednesday. By Monday morning I had convinced myself that I had no choice but to stay. I won’t be able to go home until Thursday.

Lauren had a dentist appointment scheduled for Tuesday morning to fix a chipped tooth and a neurologist appointment later that afternoon for her regular six-month follow up. I don’t believe that Lauren has ever gone a doctor or dentist appointment without me, in her life, except for a pediatrician appointment once when she was little. Now N would have to take her to the dentist and then N and George would have to take Lauren to the neurologist with my various notes and charts (I know, obsessive and excessive). Just to make it all a little more interesting, Lauren’s most recent blood work prompted the doctor to adjust her medication last Friday. The pharmacy was out of the particular dosage of pill we needed so George had to pick it up on Monday and begin the new dosage on Tuesday. I don’t know how she’ll react to the change.

Monday afternoon my father’s phone rings and he hands it to me saying, “I can’t understand what they’re saying.” It’s the doctor’s office calling to confirm my mother’s appointment….for Tuesday morning, not Wednesday. Mom and Dad had misunderstood the appointment date. I’ve already booked my flight for Thursday. If I had known, I could have tried to get out late on Tuesday I guess, but OK, who wants to mess with a snowstorm right? At this point, I’m just hoping that the storm doesn’t affect the caregiver’s ability to get into work.

An Unexpected Trip - Part 1

January 13, 2011

I have not been posting lately because I’ve been without Internet access. To find out why… read on.

Tick, tick, tick. The clock on the wall in my parent’s tiny living room/dining room/kitchen is reminding me with each second, that I am still not asleep. I am trying to find a comfortable spot on the pull-out couch which, when opened, fills the entire space. I have had to make an unplanned trip down to their “just big enough for us” home in Florida because my mother is not well and my father, who is her primary caregiver, was reaching out for help. At eighty-seven and eighty-nine, my parents, my father especially, is extremely protective of their independence. For him to even consider calling 9-1-1 to get my mother help means that he is desperate. So, I waited for a snowstorm to pass through and grabbed the first flight I could. Snowflakes were still drifting down from a dark sky when I left NJ on Saturday and headed to Tampa.

I left my husband behind to care for Lauren along with her caregivers. George should not be lifting Lauren and has a difficult time feeding her. But he perseveres and does his best. I don’t like to ask him to do so much, but what choice do I have. M is scheduled to work 10 to 10 on Saturday and Sunday and then N and C will cover from 7:30am till 10pm during the week. I don’t know how long I’ll be gone. I don’t know what I’ll find when I get to Tampa.

I speak to my parents several times a week, usually. I ask them questions. I ask about their health, what they’re eating, how they’re faring with the weather. And…they lie. I know they do. They don’t take their pills. They tell me what they think I want to hear. They protect their way of life. I think they could be more comfortable, less stressed, maybe healthier, if they lived where, and how I want them to. But that would not be their choice, their life, it would be mine. How can I think about denying them their right to choose how to live when I protect so fervently my daughter’s right to choose how she lives? I protest, rationalize, plead with them to let me help. “Come back to NJ.” “We’ll find you somewhere to live.” “We have better doctors there.” “You have family to help with whatever you need…. to make your life easier.” “No,” they say,”We’re staying where we are. We’ll be OK. We’re glad you’re here. When are you going back?”

I don’t know. My mother has done further injury to an already bad back. At least, I think it’s her back. The doctor has done no blood work, no tests, beyond an x-ray. He sent her home with pain pills that are not helping. After a week, she is still in the same amount of pain and can barely walk. I am here to assess the situation and my father’s ability to handle it. I plan to do what I can and get back to NJ as soon as possible. I’m needed there, too. There’s another snow storm arriving on Tuesday. George calls to tell me that M has called in sick. Now, there is no staff all day on Sunday. I can’t let him try to handle an entire day by himself. Fortunately, N swoops in and takes Lauren for the majority of the day. George will only have to give her a snack and put her to bed after watching some TV with her.

This is the first emergency trip I’ve had make to Florida. I know it won’t be the last. Will I be compelled at some point to force my parents to accept more help? How exactly does one go about that? I am all too aware, that in this small haven amongst the palm trees, more than one clock is ticking. Tick, tick, tick.