by Anita Bluestone
I am part of an invisible army of spousal caregivers. My tour of duty has been a long one with no discharge in sight. I have just marked the thirteenth anniversary of my husband's Parkinson's Disease diagnosis. Although I am not a superstitious person, I suppose writing at this time might help to keep some of my personal demons at bay.
I had always thought of Parkinson's Disease as an illness that affected the elderly. I couldn't imagine how this could have happened to us? We were both in our forties with two young daughters.
The one thing I hung my hat on when Barry was diagnosed was that Parkinson's Disease was not a life-threatening illness. He could live a long life and there were lots of medications. All the literature told us that "a cure was just around the corner." This is how we shared the news with our 12 and 14 year-old daughters as a way of reassuring them that life would go on as normal. Now we had an answer for why their father walked with a shuffle, had a tremor in his hand and tired so easily. With proper medication, we could have Barry back again. Those words have become hollow.
The first few years we spent trying to figure out the right balance of medications. Some gave him terrible muscle spasms. Others made him sleepy. Others prevented him from sleeping and still others caused gastric symptoms. He stopped working shortly after the diagnosis because of all of these problems and I become the main support of the family. In the first ten years of his illness there was a decline in his motor functioning and he fatigued fairly easily. However, he handled many of the household responsibilities and if we planned carefully we were able to take vacations together.
About five years ago, we entered into a new phase. Barry had surgery for something relatively minor. He was a little confused when I picked him up the next day at the hospital, but I attributed that to the anesthesia and pain medication. The first night home he was up much of the night screaming and couldn't find his way to the bathroom. By 7 AM, he was talking about the devil being in the house and was seeing mobs of people outside our window. I was terrified and immediately called his neurologist, who said this was a common occurrence in Parkinson's patients when they had anesthesia and he recommended reducing his Parkinson's medication for a few days. This did clear him up but it took a few weeks and readjusting until he was back on his regular regimen of medication without any hallucinations. Since that time, each time there is a medical or emotional stress; his cognitive and mental functioning deteriorates.
At this point in his illness, in order to maintain his mental stability we have had to keep his Parkinson's medications at a fairly low level, which means that physically, he is much more limited than he could be. We have had to trade off physical limitations for hallucinations and delusions (nobody told me that was a possibility). He is still able to walk and care for himself most of the time. However, he needs help with most fine motor activities such as buttoning, cutting, and tying shoes. When he is on antibiotics, which is very often, that compromises his Parkinson's medications and then he is even more limited physically- needs help getting in and out of the car, out of chairs and out of bed.
When Barry gets a serious infection, such as pneumonia, which occurs every few months he is hospitalized and it takes several weeks to get him back on track. I also wasn't aware going into this that about 30% percent of people with this illness develop dementia. Barry is one of those. Now my best friend of thirty-two years, my confidant, my lover, and most ardent supporter can barely carry on a conversation for more than a few minutes. What is predictable now is that there will be constant adjustments of medications and our lives can be thrown into chaos without a moment's notice. What is unpredictable is when he will be "on" enough to participate in any social activity without falling asleep or staring off into space.
So, after several major psychotic episodes, admittance to a psychiatric unit for three weeks and many regular periods of confusion, I went into therapy and I hired full time, live in help. Before I did that I felt like I was drowning. I was trying to maintain my job as a school social worker, keep up with my private practice, and manage all of the household responsibilities while also worrying about and caring for Barry. Although the cost of full time care is astoundingly high, and I am dipping into my retirement plan to pay for it (no insurance coverage for this), I must do this to live.
I recently read an article in the American Parkinson's Disease Association's newsletter. The writer was a caregiver to her husband and she began by describing caregiving as an ultimate act of love. I instantly bristled when I read that and put the article down. Since then I have been trying to unravel what triggered that reaction in me.
There are so many reasons why I remain in this situation, love being only one of them. There is the guilt over leaving someone who is incapable of caring for themselves, a sense of obligation, reactions from my children and economic constraints to name a few.
The truth is that I have had enough. I don't want to do any more emergency hospital runs and fight with doctors and nurses because I understand better than anyone how to titrate his medications. I don't want to deal with any more episodes of confusion, delusions or hallucinations. I don't want to help him in and out of the car, out of bed and into his clothes. I don't want to sit across the dinner table from him and carry on a one sided conversation. As I write this I feel my eyes watering and my throat constricting. I am in the small, private space I have carved out for myself on the second floor of our home. The image of Barry sitting alone in the living room below me saddens me. I think about how awful his life must be and how trapped and dependent he is on others to keep him going.
The horror of this illness has wreaked havoc on our family. We have watched his slow, insidious decline. There was a time when Barry was the life of the party. When we vacationed, he would talk to everyone and make friends wherever we went. He made me laugh harder than anyone I've ever known. I felt like the luckiest woman because I had a handsome man who always wanted to make love to me.
He was a Management Consultant by profession and people would always come to him for advice. He coached my children's basketball teams running from one end of the court to the other. He proudly attended all of their school plays and concerts and when they got in trouble in school and I couldn't face talking to another teacher, he would handle it. He somehow managed to get our daughters back on track when I was ready to ground them for the rest of their lives. He bought them each special treats in the supermarket, knowing that I disapproved. It was their secret and although I would complain, I smiled knowing that they had their special bond.
Sometimes he does rally, as he did for our daughter's wedding last year. He promised Erica that he would dance with her and he kept that promise. It was a cherished moment for our family. But I must accept that those are fleeting moments.
This is the unending, unresolved grief that many well spouses face. I watch helplessly as my husband drifts further from me. This was the man I danced with and our dance was a good one. It took me a long time to realize that the music had stopped and I was dancing alone. I have lost my dance partner. Although he is still with me, our lives are forever changed.
This is a deep, gut wrenching sadness that I carry with me all of the time. I grieve privately. I try to remain upbeat for my spouse and children while I am shattered into hundreds of pieces inside. Each year I lose more of my husband. I have been to many support groups, but only through the Well Spouse Foundation have I met other husbands and wives who are going through a similar process. It is an organization that provides emotional support as well as respite activities for those of us coping with the day to day dirty business of caregiving. We ski, we hike, we sail, we dance and we cry, but most of all we laugh harder than any group of people I've ever met. We wrap up our sorrow for a few days or hours, put it on a shelf and just have fun. I carry WSF cards and brochures and hand them to anyone I think should know about the organization.
This group has helped me realize that I have a life force that has kept me going through this roller coaster ride. I know that sacrificing my life will not make Barry's life any better. As a matter of fact I am a better caregiver precisely because I do get away frequently and have found ways to nurture myself and feel loved again.
I was doing a meditation a few days ago and I had an image of being on the beach and going into the water. I swam past where the waves were breaking and stood in calmer water bobbing on the waves. It was a very strong image for me as I used to be afraid to go out too deep and I would get to the point where the waves would crash into me and knock me down.
I am not drowning anymore. Now I understand that if I go deeper into my relationships and myself and I'm willing to take risks, I will experience the possibilities that life can offer me. That's what I'm trying to do now and I'll keep riding the waves. Sometimes I might misjudge them and get knocked down, but I'll get up and continue swimming.
Copyright, Well Spouse® Association. More articles by this author and others are available to registered supporting members. To join, and support the Well Spouse® Association, go here.