LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

-------

Saturday, June 21, 2008

Negativity

I'm reacting to Spouse's comment on my last post, which gives me a helpful opportunity to think more carefully about what I feel and why I write about it this way here. I tend to crash after an exhausting trip emotionally as well as physically, and what helps me when I am in that state is to let out my feelings. As I look at what I write on this blog I feel I sound like a whiner, always complaining about how John's issues affect me rather than feeling empathy for him. But again, having grown up in a family where my feelings were denied, I know that what is best for me is to accept my feelings rather than get stuck in feeling bad about feeling bad. I hope that what I write might help someone else who is feeling selfish and inadequate feel not so alone.

I do feel my future has been taken away from me. I expected this stage in my life (age 53 with my kids out of the house) to be a time when I could be more creative and productive in my own life. I hoped to be more active professionally and to redeem my rather weak research record by writing an important book in my field (I had begun research on that project but had to put it aside because of new administrative responsibilities at work). I had even responded positively to feelers about a job that would have been a large step up in another city, once John had retired and we no longer had the problem of two academic jobs in one place. Yes, I will have a life when this is over, but not those 15 years before retirement.

I had hoped to rebuild a deeper relationship with John. I had hoped we would now be able to have more of a social life than we had when two kids and two full time jobs took all of our energy and our house was in no shape to invite anyone over. A little more than a year ago I came to some closure on a long process of healing from childhood sexual abuse and felt that working through that old pain would no longer be a major focus of my life. I hoped that I could experience more joy in my life.

Now I fear whether I will even be able to keep my job, or whether I will need to retire earlier than I would have wanted in order to care for John (I will be eligible for full retirement in a few years so financially it will make more sense to retire). I certainly don't expect to be able to take on anything more ambitious in the way of work that would require a lot of travel. I'm committed to making time for my exercise but I have had to cut back--John's doctor's appointments and the extra stuff I have to do as the responsibilities of our home fall all on me take away from the time I would put into training enought that I don't expect to be able to do a longer triathlon this year.

I am very blessed. We have the money and flexible schedule to be able to travel. We have two wonderful kids. I have come as far as I have in my healing journey and have a wonderful therapist. I responded to a diabetes diagnosis five years ago by getting healthy and I enjoy very much the training for triathlons I do for exercise. I feel a part of a faith community (actually several faith communities). But today on my birthday I am grieving my losses.

And now I am going to go out for a bike ride and that will help my depression.

2 comments:

Spouse said...

What I am hearing is that you feel trapped- like you are in a Chinese finger puzzle, the more you struggle the tighter the you are wrapped. I'm so glad that you have found relief in triathalon training. Keep it up !! I have social tennis, sometimes just smashing that ball on the wall helps too. Please do not throw away your next 15 years ! You do need to follow through with your plans for you. John is not an invalid yet, he still goes shopping by himself -- with the the aid of the right meds, he might stay at this level for a long time. If you have an opportunity for advancement that requires a move, please consider it, you are not tied to John's job any more. A new location may provide better help for him also. In addition, a bigger salary for you would allow you to hire help when you need it.
Yes, I do feel resentments at times when I'm required to clean up the 2 gallons of yellow pee from the floor in front of the toilet because he forgot to make sure his "equipment" was inside the seat.
Advising you to "relax" is reminding me to do the same.
I hope you had a wonderful revitalizing ride, and wish you a Happy Stress Free Birthday !!!
Here's a hug-
Di

Joann said...

It's only natural to grieve the loss of some aspects of your future and John's future with you. Life will change and has already changed some, but it's kind of like watching grass grow. The changes are so slow that you'll look back and wonder "When did that happen?" We've been very lucky finding really great caregivers (since B. doesn't need a nurse, just a companion). Our caregiver will take her to regular doc appts. and even take her out to eat (which I don't do anymore). God bless her, she is our family savior and she loves B. and is so happy for the few hours a day that she works. You too will find the right help when you need it. I'm no advertisement for being satisfied with caregiving, but it's easier with help. Perhaps you can get John gradually used to having someone come in the house by getting a housekkeeper for a few hours a week? I have a lady that comes every other week and I adore the fact that she does all the heavy cleaning. It was hard at me at first to let someone into MY space, but now I worship her. $50 every two weeks is SO worth it.

I know it's hard to imagine the future with all these new developments, but it's all possible, and you're very creative at finding answers to new situations. You'll figure things out as you go along. No matter what, you're entitled to feel how you feel. I get moments when I'm angry, depressed or just plain exasperated and I'm not married to the person I do caregiving for!