Wednesday, April 15, 2009

More on Advocacy

I have written numerous times on being your own advocate, or getting someone to advocate for you if you are chronically ill. Recently I posted an article by Dr. Laurie Ferguson of Creaky Joints about the same topic. Judging by the response I got in comments and e-mails I certainly hit upon something that is a hot topic for all of us!

Because I am so ill myself right now, I have had to do a lot of advocating for myself with doctors. My mother is also ill, and because she is older and isn't able to be confrontational with doctors, I have to do most of the advocating for her as well. It is exhausting, but so necessary. No matter how much you may like your doctor, you have to look out for your own health. I am not saying that doctors are trying give us bad care, but they are overworked and fighting through the same broken medical health system we are!

I have a dear friend who has an elderly mom who has multiple medical problems. He has been trying to sort out what is going on with her. Some doctors will work with him easily, others are not responsive. She has been WAY over medicated since a recent hospitalization. Had he not continued to advocate for her, and fight for someone to listen, I have no doubt that results would have been deadly.

My mother will be needing surgery soon, and I will be in the position of making sure that things get taken care of properly for her. I am still trying to get my own surgery scheduled and sorted out.

Some of you wrote that you have wonderful spouses and family members who are willing to take on this role. Others wrote that they, like me, are not only their own advocate, but in many cases are caring for a sick spouse or parent as well. Not everyone has family close by or friends who are willing to step up and help out in this way. Believe me I understand this, because my own situation is like that as well. However, I have found that if you can be creative you can find ways of getting some of the help you need.

We all have to fill out those wonderful "privacy forms" each time we start at a new doctors office. Make sure that you know who IS willing to help, even if they aren't local, and make sure they are listed as contacts on those forms. I have had friends and family members who spoke to doctors in other states for me via phone or e-mail when I needed help. As long as I have given permission, most doctors are willing to speak with someone about my care. So if you have adult children or friends who would help, but aren't able to come to doctor's visits with you, this is a way they can be involved in your care if you need them.

I know for me the level of help I need waxes and wanes with the degree of illness I am suffering. I try not to involve people in all the little daily things, but I do call them in when I feel I need help.

Another way you might find of getting others to help is in researching medications or conditions for you. Sometimes just sitting at the computer or making a call to the insurance company can be overwhelming. This is another area where someone else can step in.

I know a lot of you resist the idea of letting people know you need help. Many people don't want everyone knowing the degree of their illness or disability. That is your right and your choice, however, if you want or need help, perhaps you have to look at who you are protecting by not asking for help when you need it. Again, over and over I have found that most of my friends and family WANT to help, they simply have no idea what to do. They are grateful when I give them a concrete task that helps me out. It makes them feel like they are doing something, and takes away some of the feelings of helplessness that they have having to sit and watch me suffer. It helps me because it is one less thing I need to do. It is a win-win situation.

I am not saying you need to share everything about your illness with every person you know. But you know who you can trust and count on, so start thinking about how you can get some much needed support without burdening or over-taxing your friends and loved ones!

You are worth taking care of and you deserve the support and advocacy you need!


One Mom said...

Everything you say is ture, Maureen. As the caregiver in the family, everyone perceives me as the "strong and capable" one. They really don't have a clue as to what goes on nor do I think they really want to; they are more comfortable letting me deal with the realities of daily life.

When my husband had his stroke they circled around for moral support but they could not handle dealing with the doctors, the rehab, the medications, etc. I think it frightened them on many levels.

The fact that I now have a chronic disease is simply not discussed. I think that often friends and family do not want to acknowledge illness or disability in a loved one and in ignoring it, can deny its existence, even if only for a while longer.

Finding an advocate under these circumstances is challenging. Sometimes we just have to wait to find out who is willing and able to assist when the need arises!

Renee said...

Such good information for all of us. I have Joel take notes all the time for me because I miss so much info given to me when at the doctor. In years past he has been an advocate for me, but now I can make my own needs met too.
It has to be so hard when you are ill too and must advocate for your mom...
This is such a good post for all of us to think about.

ConnieFoggles said...

I hope that you have someone that can help you out a bit. Even if it's it to drive you to the doctor's office, or pick up a prescription. Just to take a little bit of the load off of you would be so helpful. That is my prayer for you.

Barbara K. said...

Great post. Sometimes it takes a village to help care for someone with a serious illness. Good luck with your mom's and your own surgery.

Shauna said...

Hi Maureen,

Come on by and pick up an award, a 'Premio Dardos' that I have given you!!

Take care honey,


One Mom said...

thinking of you, missing you and saying a prayer that you're getting stronger and healthier every day

Kerry said...

Maureen, Miss you and hope you are doing okay. Kerry