Parkinson Disease - Research regarding caregivers

Last week I informed you that today I would record my notes for you regarding Rabbi, Dr Rena Arsinoff’s research. Her thesis was on Palliative Care. Her interest is taking Palliative and using it for chronic care. She affirmed that Parkinson Disease is chronic, progressive and degenerative, a neurological disease. Patients have tremors, though not all, rigidity and postural instability. There are many physical symptoms, emotional dysfunctions, sleep problems and falls. As the disease progresses, many experience psychiatric conditions and neuropathic pain. Patients have decreased dopamine. Synthetic dopamine is the drug of choice. There are five stages of the disease. Palliative Care is about living and not dying. There is little research mutuality or Parkinson with spouses. Mutuality is the quality of the relationship. With increasing commitment, a marital relationship shifts. Couple identity changes if caregiving becomes the predominant of the relationship. Research is needed on the lived experiences of changes in relationships, expression of feelings and mutuality in advanced stages of Parkinson. Research on caregiving is lacking and needed. Dr Arsinoff described how she conducted her qualitative research. You may look up my previous blogs where I explain the different types of research and how it is conducted. Dr Arsinoff had what I consider a small sample of seven care giving wives and five husbands. She was attempting to have an equal amount of men and women caregivers which is why the sample is small. The average age of the caregiver spouses is 75 years old. All are married and retired. The Spatiality Themes: Caregivers said: home is no longer the sanctuary it once was. You may leave your partner alone and find him on the floor. Where can we go? Motorized transportation for the patient - one caregiver said Tim Horton’s has a small washroom and therefore not able to use it so goes to the man’s washroom. (Study conducted in England). Dreams for travel has been dashed. Feels like a baby sitter. Feeling trapped at home. “I am in prison without bars.” One man said he feels guilty leaving his wife alone to go out and enjoy himself, so he doesn’t. One woman will not go on the balcony because she fears being pushed, due to cognitive diminishment. Partner has hit her or pushed her. Temporality Themes: Before I knew he was a kind person who helped people and me. After advance Parkinson, he is no longer the same. Now we look like a couple of recluses but that is not who we are. I just can’t do it anymore. Negative self regard over time. I’m more short tempered. Sometimes I feel dissatisfied. Most time is spent together now. “I don’t have time to be me.” One woman said, I am old now, I don’t know when I’ll become sick. Corporeality Themes: My body is falling apart. I’m also aging. Just wears you down after awhile…I will be cancer free in….. Hearing - it is more silent. One man caregiver said that the loss of hearing his wife’s voice was worse than the loss of sex. Smell - he pees. Touch - Sometimes five times a night, I must take her out of bed, like a potato bag. - That’s the only touch. Relationality - Challenge of finding enjoyment in each other. His sense of humour is pretty well shot. - Fun is a bit of a stretch. I have a husband but there is no one there. I feel the partner, the intellectual mental partner is not there. One man said, I kiss her sometimes but it is like kissing a baby. Love - “Well I get nothing (sexually) from him - a kiss maybe. One woman said it is hard getting a card because nothing expresses how she feels. One man said, “She’s my life.” It’s about what you are together. There is a loss of identity as a couple. One man said that Parkinson affects everything. (Hodgson et.al. 2004, Parkinson Disease is a couple disease). Sadness is common especially when cognitive changes occur. Care givers often feel ignored. To be continued next week………. Any possible errors in my notes, I claim as mine and not as those of the speaker.