Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Miscellaneous - Help for Caregivers

Question:

Dear Kathy M.,

I have a 35 year old daughter that has been severely brain injured for almost 16 years. Two years ago my doctor put me on Prozac; diagnosing me as clinically depressed! After about 3 months I realezed that I was not functioning as myself and stopped taking the medication. I felt better after taking it because I could fall asleep and not hear my daughter who sleeps right next to me in her hospital bed.

Besides the sleep deprivation, we need other things to help her (and us). It seems that if you have nothing there is all kinds of programs out there to help you, but if you have over $1000.00 monthly income you fall through the cracks. I want to take care of her at home, but it is almost impossible to do so without help! My husband and I need a break from the 24 hour routine.

I get very frustrated also, because after formal "rehabilitation" is completed, all interest in helping the prson or their family is lost. What do you do when you everything "the system" has to offer is exhaused and you are left to take care of your loved one and the doctors and the rehabilitation hospitals tell you there is nothing more the medical community can do? She is my 35 year old baby and I am not about to give up on her!

Is there any legislation in the works to provide moneys or grants for respite care for caretakers? If not I would like information on how to initiate such legislation. Thanks for any help you can provide.

Sheryl


Kathy's Response:

Dear Sheryl,

Respite is extremely important for caregivers. So is support from others who are "walking the walk" -- not to mention being armed with information about how to get needed services.

Let's start with the issue of support and what to do after rehab. is over.

How "rehab" works

First, you are not alone in your experience. The fact of the matter is that families and "patients" get attentinon and services when service providers are paid to give them. In most cases, after funding has run out, service providers need to move on to caring for other patients who are funded. This is not an indictment of the people who are employed by "the system," though it does tell us that the services "the system" provides are lacking in many important ways.

Until we, as a community of persons with brain injury and people who care about how we are treated and cared for, figure out how to extend services beyond "formal rehab," you and others will continue to struggle with these issues.

The only interim solution I have been able to come up with is to network with others. Several years ago I started facilitating e- mail support lists -- one for persons with brain injury (called TBI-WORKING), one for families and friends of the person (called ASSIST-TBI) and one for educators and parents of children in school (called BRAIN-EDU). This is a grass-roots self-help approach that allows people to network internationally. It does not solve all the problems, but does provide support and ideas about resources or strategies. Others in the brain-injury community are working on the legislative end too, and I'll get to that in a minute.

For more information about these e-mail lists (mine and others), please go the the following URL, which is part of this site: http://www.tbimo.org/groups.asp#internet

Sleep

On the issue of sleep, I'd like to share a strategy with you that I have used and have seen used successfully by my students too.

You may know that persons with brain injury often suffer from something called auditory overload. This means we are overstimulated by noise -- and in some cases it can be extreme -- the the point where "normal" noise like background conversations or other "noises" in ordinary day-to-day life, make us very uncomfortable and agitated. Sleeping can be difficult too -- things like a ticking clock or a refrigerator motor can interfer with sleep as much as having to listen to a subway train might bother others.

A possible solution to wear ear plugs inside the ears, with "ear protectors" over the ears. Ear protectors are those big spongy things jackhammer operators (and other workers who deal with extreme noise) wear on their heads when they work. Turns out that this combination works well when those of us who have auditory overload problems need to protect ourself from "normal" noises.

Turns out you can sleep in them too. I know because I've done it. A student of mine also used this strategy when she had to share a room with someone whose oxygen tank kept her up.

Programs for caregivers

I don't know of specific programs, but I do know that some states allow families to set up their homes as "family foster care" homes, which enables the family to pay for services for their loved one -- also respite. Oregon allows this. Perhaps your state does too. Have you contacted your local social services agency to help you with this( in Oregon, people can get a social worker who can help them access services through "Senior and Disabled Services"). Note that the financial situation of the adults in the family should be considered separate from the disabled adult person, if that helps.

This is one of those things that the e-mail support lists help with. Some of the lists are large (with hundreds of members all over the country, and the world, for that matter). You can often "post" a message to find others in your state, or even your town, and they will often know how to access services -- even private grants.

Legislation

The state association and your local state chapter for the Brain Injury Association, Inc. will probably have the best infomration about this -- both what is in the works and how you can participate. See the following URL for the national association: http://www.biausa.org/

When you go to this web site, you can also find your state on the map, click on it, and get to your state's association.

Information about current legislative efforts is often posted on the lists too. There are quite a few activists in the brain injury community (as there should be, given the depth of need).

Hope this helps! Do sign up on some support lists. Also, if you have not yet joined a local support group, this can be helpful too.

Kathy M.

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