Stan had back surgery – a ‘laminectomy’ to relieve the extreme pain he had been having in his hip and leg. The pain had prevented him from walking at all for several months, so we decided it was time to do something about it. Our neurologist and internist both felt that surgery was too risky for an advanced Parkinsonian, but Stan and I wanted him to get some pain relief – nothing we had tried had had a lasting effect. I knew that he would never be able to walk again if we did not do this, so I felt that we did not have a choice to make. It was too painful for him and difficult for me to not have him walking at all. I have heard many horror stories about the hospitalizations of Parkinsonians – from not being given medications to extreme episodes of psychosis. My style is to get involved, but I knew ahead of time that I would have to be his advocate and stay with him for the entire time to be able to anticipate and/or handle any problems.
Parkinson’s patients are dependent on a high quality of care in the hospital. The underlying chronic disease increases the difficulty of their care and the chance of complications. Most surgeries today, except the very serious ones, are dealt with in a short-stay unit of the hospitals or as outpatient. I was told that most people who have the surgery that Stan had stay for only one night. Nursing staffs have been reduced in hospitals to save money, as the quality of care has been considered less important that the cost of care. Many physicians and nurses are not very knowledgeable about Parkinson’s disease, and if your regular internist and/or neurologist are not available they will contact the surgeon, in our case, or the doctor on call if any problems arise. Think again if you feel that they will know much about your loved one’s PD. We know a lot more because we live with it every day.
I basically took charge of Stan’s Parkinson’s meds, having been given permission from our neurologist, so we did not have to wait or meet resistance from nursing when I felt Stan should be given his PD medication. I think they welcomed not having to pay attention to his complicated regimen of meds and only gave him non-PD medication. It meant that I, or somebody else, had to be there all the time to monitor, but it was worth it because his four day hospitalization went well and after four days in a Rehab hospital, we came home. I was very glad to get back to my own bed. In the hospital I had a chair and in Rehab I had the ‘other bed’ in Stan’s room.
Based on our experience, I’d like to give you some recommendations if hospitalization is necessary for you:
- Take your ‘Advanced Medical Directives’ document and a detailed list of medications (doses and times) with you when you are admitted. They will be put in your chart immediately. If you don’t have one, you know what to do!!!!
- Arrange for someone to be in the hospital room at least 16 hours a day. I felt that 24 hours was necessary because Stan’s anxiety increased a great deal when I was not there, which led to some significant mental changes which the nursing staff would not deal with.
- Get the Parkinsonian back on their schedule of meds immediately after leaving the recovery room. I also kept Stan on schedule until they took him to the operating room.
- Make sure you are aware of all the medications being given the Parkinsonian. Some can interfere with the proper functioning of the PD meds. If you are unsure, ask your neurologist or the charge nurse. You might want to keep a log of all the meds given to the Parkinsonian, even the PD meds. It was easier than trying to remember if I had given him everything.
- Mental changes occur frequently (confusion, disorientation, hallucinations, paranoia), but as frightening as that can be, they are nearly always temporary. Family and friends may need reassurance as well as you. If someone from your family is there most of the time, it might avoid the necessity for the use of restraints or unnecessary additional medication.
Parkinsonians may not be able to deal well with everything that happens in a hospital. It can be a pretty intimidating and scary place. They really need an advocate and I was it in this case, but I do not regret it in any way. The experience was not like many that I had heard about and he came through it very well – and that is better for me in the long run. Now we just have to get his legs strengthened so he can chase me around again!!
Editors Note: Susan was caregiver to her husband Stan, diagnosed with Parkinson’s disease in 1980. He passed away on August 12, 2008 at the age of 73.
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master’s Degrees, in Educational Psychology and Biostatistics / Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Bio-statistician at the National Institute of Mental Health.Susan has served on the Board of local Parkinson’s disease support group organizations since the early 1990’s. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the American Parkinson’s Disease Association and the National Parkinson’s Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson’s disease research.