Thursday, December 2, 2010

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/

15 comments:

  1. Thi is a terrific post. I am a pharmacist specializing in Parkinson's, and I can relate so well to your discussion of medications in the hospital. The hospital can be a frightening place for someone with PD to go, and it is crucial that they have an advocate.

    Lindy Swain, PharmD
    www.pharmacyadvocates.com

    ReplyDelete
    Replies
    1. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
      I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
      You can also add him up on WhatsApp +1 (256)-251-3614

      He can also cure the following diseases
      1. Herpes virus
      2. Chronic venous disease
      3. Gonorrhoea
      4. Hiv/aids
      5. Alzheimers disease
      6. Asepsis
      7. Cancer
      8. Cerebrospinal meingtitis
      9. Infertility problems
      10. Als/ebv
      11. Hpv
      12. Enlargement of any type
      13. Getting back ex lover/divorce
      14. Hepatitis a,b,c
      15. Syphilis
      16. Arthritis
      17. Severe atopic dermatitis
      18. Leukaemia/lupus virus and many more....

      Delete
  2. Yes, Lindy, the caregiver has to be a full-time fighter to get the most effective care for a loved one with Parkinson's. Our pharmacist has been our best friend as I'm sure you are to many Parkinson's patients and caregivers.

    Bonnie

    ReplyDelete
  3. I just want to add something regarding medication schedules at hospitals. It is a law and the patients right to be able to bring their own medication and dispense it as they see fit. You do not need to give your medication to the nurses. My husband is not only living with Parkinson's but was an ER/ICU nurse for 15 years. Some hospitals leave you feeling they have to give the meds but it is always the patient's right. In addition, if you do not like your doctor or your nurse it is your right to request another and see that it is done. You can always be an advocate for your care or the care of your loved one. I wish more people knew this...

    ReplyDelete
    Replies
    1. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
      I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
      You can also add him up on WhatsApp +1 (256)-251-3614

      He can also cure the following diseases
      1. Herpes virus
      2. Chronic venous disease
      3. Gonorrhoea
      4. Hiv/aids
      5. Alzheimers disease
      6. Asepsis
      7. Cancer
      8. Cerebrospinal meingtitis
      9. Infertility problems
      10. Als/ebv
      11. Hpv
      12. Enlargement of any type
      13. Getting back ex lover/divorce
      14. Hepatitis a,b,c
      15. Syphilis
      16. Arthritis
      17. Severe atopic dermatitis
      18. Leukaemia/lupus virus and many more....

      Delete
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    ReplyDelete
  7. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
    I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
    You can also add him up on WhatsApp +1 (256)-251-3614

    He can also cure the following diseases
    1. Herpes virus
    2. Chronic venous disease
    3. Gonorrhoea
    4. Hiv/aids
    5. Alzheimers disease
    6. Asepsis
    7. Cancer
    8. Cerebrospinal meingtitis
    9. Infertility problems
    10. Als/ebv
    11. Hpv
    12. Enlargement of any type
    13. Getting back ex lover/divorce
    14. Hepatitis a,b,c
    15. Syphilis
    16. Arthritis
    17. Severe atopic dermatitis
    18. Leukaemia/lupus virus and many more....

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  11. My husband was diagnosed with early onset Parkinson's disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure ultimate health home, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimatehealthhome they walked us through the proper steps,am highly recommended this ultimatehealthhome@gmail.com to anyone who needs help.

    ReplyDelete
  12. i was diagnosed of parkinson disease 5 years ago,i started azilect,then mirapex as the disease progressed in february last year,and i started on parkinson disease herbal medicine from ultimate life clinic,few months into the treatment  i made a significant recovery,almost all my symptoms are gone,great improvement with my movement and balance,it been a year and life has been so good for me,reach them through there website at www.ultimatelifeclinic.com

    ReplyDelete
    Replies
    1. ULTIMATE LIFE CLINIC THERE TREATMENT IS VERY NICE MY FATHER IS ALSO USING THERE TREATMENT

      Delete

If you have questions you would like answered about caregiving a person with Parkinson's Disease in future posts, please add them to your comment. I have no medical knowledge and cannot discuss drug treatments.