Category: Caregivers

What resources are available for caregivers?

2/2/2015

Question:
I'm a caregiver for my husband who has MS and I'm struggling and need help. When I search the web, they say "accept help, get enough rest, make time for leisure, be good to myself, share my feelings with others, etc." This type of advice doesn't help because of course I know I should do these things, but that is easier said than done! Are there any classes or real help for caregivers?

Answer:
We checked with Matthew Farr, who is a physical therapist and manager at the Mandell Center for MS in Hartford, CT. He is a trainer for a program called POWERFUL TOOLS FOR CAREGIVERS which is a great program for caregivers of those with MS.

This 6-week class (they are offered all around the country) focuses on:

Self-Care Behaviors: (increased exercise, use of relaxation techniques and medical check ups.)
Management of Emotions: (reduced guilt, anger, and depression.)
Self-efficacy (increased confidence in coping with caregiving demands.)
Use of Community Resources: (increased utilization of community services.)

The class is only once a week to make it manageable. You can call 1 (508) 719-6980 or email them to find out when classes will be held in your area.

Here is another link for caregiver resources: CAREGIVER RESOURCES

Why Do Some People With MS Stop Following Their Doctor's Recommendations?

1/30/2014

Adherence
People often ask me how to get their friends and family to follow their doctor’s recommendations and we, as doctors, often wonder if our patients, particularly those who come in alone for visits, are taking their medications as directed and following other non medicinal recommendations. There is an entire field of research devoted to this topic and some general recommendations that are useful. The most important thing to remember is that this is an ongoing process. Even if a person follows a recommendation initially this rarely lasts without persistent follow-up and attention to the process outlined in this blog.

Let’s first consider the concept of adherence and the process anyone goes through when making a decision. This will help you see where things can break down.

A person must be educated or convinced of a need to do something and believe that they are capable of carrying out this activity (Click here to read a blog about self efficacy - http://bit.ly/1cy0Tpu ). Simply being told to do something will never work unless there is a heavy punitive price to pay for non-adherence, such as going to jail or being sent to your room without dinner. Even when punitive measures are employed, they rarely work without good role models, education and addressing other unmet needs. Clearly, becoming angry or upset with friends or family for not adhering to medical advice will not work. It is far better to try to understand their reasons for non-adherence and address them through multiple sources of education. You also are better served by using motivational interviewing to help modify behavior. Be understanding and accept that they at least believe there is a valid reason for non-adherence. Do not be dismissive. Instead, try to reinforce any good decisions they have made in the past such as, “ you know I am so proud of you going to the doctor ”, even if that is the only recommendation they followed. Some people just require more time and education from someone skilled at this process such as nurse educator or social worker. I find it is far better if the doctor is able to devote an entire session to this process at a separate visit instead of the usual visit where all the patients and doctors concerns are addressed. Often there are barriers to individuals getting started that are valid; “I’m too busy”, “it costs too much”, “my best friend told me that drug is dangerous”, or “nothing has worked in the past, why should this work”. Try to be a good role model yourself. Family members complaining about loved ones who refuse to quit smoking even though the same family members continue to smoke themselves always amaze me. No matter what the concern or the reason, these problems with adherence can emerge at any time during the process of following the treatment recommendation; so you need to be vigilant even after an individual has followed the recommendation for years.
Depression, anxiety and mood disorders are a main reason for failure to adhere to advice. People become paralyzed by these disorders and unable to act. They have little motivation and their inability to see a “light at the end of the tunnel” makes the entire process of change far too difficult. To have any hope of making progress in this situation requires effective management of the mood disorder. You must address this first and then move to other important issues, even if the patient does not believe this is the main problem. This is part of the art of medicine.
Cognitive problems also require a separate section; often family or health care providers do not recognize the problems with cognition even though these problems most commonly interfere with learning, planning and executing a recommended plan of treatment. If this is a possible issue, and it often is, you should address this with the health care provider.

The same process described above applies to compliance with treatment. This is defined as not only following the doctor’s advice but doing it correctly, such as taking the right dose at the right time. Often this is easier to address because there are easily modified barriers interfering with compliance such as the cost of taking the medication daily, the pain of the injection, the side effect of the medication, injection fatigue, the complexity of the dosing schedule or a change in the persons schedule that makes it more difficult. Try to find out what those barriers are and work on them. Again, use motivational interviewing and continually look for ways to reinforce all the good things the person is doing.

Lastly, the ability to continue following a doctor’s recommendations after several months requires one additional factor; the patient needs to see results. This can be difficult with a condition that is continuing to get worse despite following the recommended treatment. The argument that you would be worse off if you weren’t on a particular treatment is often a bitter and unacceptable pill to follow. This is where it is so important to educate people about what a treatment can and can not accomplish so they can make informed decisions. Getting through this process also requires you to establish explicit goals of treatment with your doctor (see prior blog on platform therapy...http://bit.ly/1dQvqvR) and understanding that accomplishing these goals may require you to do multiple things besides taking a drug. In the long run, stopping a treatment may be the correct decision but in reality people often make the decision to stop a treatment too quickly. Setting explicit goals helps alleviate this problem.

Dr. Kinkel

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What resources are available for caregivers?

Why Do Some People With MS Stop Following Their Doctor's Recommendations?

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Welcome to the Virtual MS Center!﻿

What resources are available for caregivers?

Why Do Some People With MS Stop Following Their Doctor's Recommendations?

Archives

Categories

Welcome to the Virtual MS Center!