Hospice Revisited: Resources

In my previous article, Hospice Revisited, I spoke about the misconceptions around hospice and palliative care. In addition to that, I wanted to suggest some resources that could be helpful:

Volunteer Caregivers

Check your local phone book and the Internet for volunteer caregivers for the chronically ill. They do light household chores, cooking, shopping, transportation & companionship for those who live alone. Many churches, synagogues, community and senior centers offer meals for free or a small fee and can put you in touch with volunteers that will be more than happy to help you out with anything you need.

Meals-on-Wheels home-delivered meals may charge a small fee (depending on your ability to pay) to help cover costs; if you can't afford to pay, the meals are free. Most Meals-on-Wheels only supply meals Monday through Friday so on the weekend microwave cooking is the best and easiest way to fix a meal if you live alone. For more info about Meals-on-Wheels, see this link.

Transportation Services

If transportation is a problem because you can no longer drive, The Americans with Disabilities Act requires transit agencies to provide curb-to-curb paratransit service to those individuals who are unable to use regular public transportation. Check your local phone book or the web for curb-to-curb paratransit service run by private, nonprofit, and/or public organizations and is usually free or low-cost.

If you're 60 or older, you may also be eligible for government programs administered through your local department on aging such as transportation services, meals programs and limited in-home personal care and chore services.

What's Best for You

I want you all to know that I feel hospice can be of great help to many. As long as it's giving you a better quality of life, if you are prescribed hospice take advantage of everything they have to offer. A good hospice will improve the quality and quantity of your life but, you must not let them dictate to you anything you don't want done or allow them to take away any medications you feel you need to stay healthy.

Last month I was once again referred to hospice due to the fact both my COPD and CHF are getting worse. During the interview with them I found out they did not supply three of the medications I take for my COPD. The meds they do provide would lessen the quality of my life. So I said thanks but, at this time I feel you cannot provide me with the quality of care I want and I will not be needing your services. No matter how bad things seem if you feel hospice is not right for you just say no and find an alternative.

Always remember you are in charge of your health, the final decision on what medications and treatments you are up to you. The course taken by COPD is different with every one of us; because a doctor thinks you're going to die in three months, six months, a year does not make it so.

Many with severe COPD are put on hospice because they're maxed out on all available medications/treatments and their doctor can't do anything else for us so they refer us to hospice. Always remain proactive in all decisions concerning your COPD and health. The doctors, nurses, therapists, any other medical professional you've dealt with, listen to their opinion, advice, and what medications/treatments they feel are best for you. Then use what you've learned over the years about the different medications and treatments and choose the ones that are best for you because you're the only one that really knows how they make you feel - which medications/treatments work for you, and which do not. Once you find the combination that works for you stick to it and don't let anyone try to give you or change any medication or treatment that works for you for a medication or treatment you know is going to have a negative affect on your COPD.

You are the master of your own body and your own health, so eat right, exercise, take the best medications available, and never given up hope for a cure. Breathe deep and easy.

Editor’s Note: We are extremely saddened to say that on March 2, 2018, Mary Ultes passed away. Mary was an engaged advocate for the COPD community who strived to help people live fulfilling lives. She is deeply missed.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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