Caregivers' Dilemma by Advocate Carmel Boosamra

I have just received the December 2010 issue of e-ParkinsonPost, and this month there are excellent articles for everyone. I am linking you to the entire issue so please read every article through to the end, particularly those on deep brain stimulation, new research and proposals for new government support for patients and caregivers of people with Parkinson's. Here, however, I am reposting the specific article written by caregiver by Carmel Boosamra. Carmel thought she had read everything she needed to know to assist her husband Frank on his journey with Parkinson’s but she didn’t know the half of it. “I hadn’t even scratched the surface,” she says, recalling some of the challenges. BONNIE

Here are the things that impacted her caregiving -- eParkinsonPost, published December 2, 2010:
Economic impact. Frank had to sell his business. He had been a pioneer in supplying and installing solar control window film in the Ottawa area. “Having him lose his source of income was pretty traumatic for both of us.”
Loss of driver’s licence. When the doctor notified the Ministry of Transportation that Frank should no longer drive because of muscle rigidity and some cognitive decline, “that had a bigger impact on Frank psychologically than anything else. Whenever anyone asked him what was the worst thing about dealing with Parkinson’s, he would say, ‘losing my driver’s licence’.” (I was the one who had to take away my husband's driver's licence because the doctors didn't. I was angry the neither the neurologist nor family doctor took responsibility to do it. BONNIE)
Co-existing health problems. Frank had heart bypass surgery 10 years before he was diagnosed with Parkinson’s in 1992, at age 52. He also had insulin-dependent diabetes and, in 1999, required surgery to amputate his foot. “The anaesthetic played havoc with his Parkinson’s.”
Medication management in the hospital. “There was a big problem trying to get the meds on time every time Frank was hospitalized.” Carmel recalls being stunned when a medical resident asked her how long her husband had been having psychotic episodes. The incident spurred her determination to educate and advocate on behalf of people with Parkinson’s. “During all the hospital stays, getting medication on time was a constant battle with the medical staff.” (I have experienced the same thing except for one occasion. BONNIE)
Medication management at home. “As the Parkinson’s medications were no longer effective, the neurologist kept trying different drugs to see what worked best but Frank would get severe hallucinations which I found very frightening. The neurologist was a great asset to me because he took the time to help me understand what was going on. At one point, Frank was on three different types of drugs but eventually it came down to one.”
Safety concerns. “Frank was home alone while I was at work. He was falling all the time and he was hallucinating. I never knew what to expect when I came through the door at the end of my day. One time I came home and found everything removed from the china cabinet and packed away in boxes. Frank was cooking in the kitchen and something was burning in the oven but he didn’t realize it. He was in his own little world and he was paranoid that someone was coming to take everything away. It was then that I decided this isn’t good. We need to find a solution. Luckily, we had been receiving home care for three years, so they were ready to place Frank into a care facility as soon as I called them. ”
Power of attorney. “Power of attorney was something that we both discussed and planned. We arranged it while Frank was fully capable of making that decision, which made the whole process easier for me emotionally. We set up a power of attorney for finances/property and a power of attorney for personal/healthcare decisions. I highly recommend these legal avenues. Some people may feel it means giving up their legal rights or voice but it doesn’t have to be, as it is not used all the time but is available when needed.”
Planning ahead for future care. “From the start, Frank was realistic and practical when it came to his care and future needs. We had visited care facilities and decided together which one we wanted him to go to. When it was time to move, we didn’t get his choice at first, but we eventually got the one we wanted.”
Dealing with symptoms of advanced Parkinson’s. “The saddest day for me was the day we went to see his neurologist and the neurologist told me that Frank had Lewy body dementia, which can happen in late-stage Parkinson’s. That was in fall 2007. From that point on, Frank just faded completely. I could see that he wanted to say something to me but he couldn’t get the words out; his cognitive ability wouldn’t allow him to form the words. As a partner and as a caregiver, it was tough knowing he had lost that ability to communicate verbally. After a time, I got used to it. He communicated to me through his eyes. I could tell what he wanted to say just by the look in his eyes.”
Scarcity of information. “I wish I had known more about Lewy body disease. It was there long before it was diagnosed but I had no information to help me understand it. There was no resource available to tell me about advanced Parkinson’s, such as what to look for when someone starts having swallowing problems. I watched these things happen gradually to Frank but I think I would have accepted it better if had some knowledge about it.”
The toughest issue. “The loss of the person. In the last year of Frank’s life, I went to see him every day and held his hand. Our relationship was now simply holding hands. It was very sad. It’s human instinct to just persevere when you’re faced with circumstances like that with the person you love but I don’t know how I got through that.” Frank Boosamra died in July 2008. (It is an ongoing grieving process every time you see your loved one, and continual grief wears the caregiver down--emotonally, spiritually and physically. When it lasts longer than one year -- for some they even make it through four years of loyal attendance, but there comes a time when caregivers in this situation have to start making decisions to preserve their own health and sanity. BONNIE)

Asked if there is anything she would do differently, Carmel says, “I did everything that was humanly possible, as a caregiver advocating for Frank, making sure we got home care when they wanted to reduce the hours, advocating with the doctors and nurses in the hospital to ensure he got his medication on time. My advice to anybody who is caring for someone with late-stage Parkinson’s is to keep advocating for them and treat each moment you share with your loved one as a precious time.”

Carmel currently serves on Parkinson Society Ottawa’s board of directors and is a member of the Ontario Advocacy Committee. She says, “Because I experienced and saw the misunderstanding and lack of knowledge about Parkinson’s that’s out there in the general public and in our government policymakers, I feel it’s a public service, on my part, to become involved and do something about that.”

TO READ THE FULL DECEMBER 2010 ISSUE OF EPARKINSONPOST, GO TO:
http://parkinsonpost.com/2010/12/