Gathering the Tools for the Tool Box

Hello, gentle readers!  Today I'd like to address the tool box.  The tool box is an accumulation of resources that you can tap in to when you have a loved one with C.T.E.  In the beginning, no one told me a darn thing about how to handle this, where you can find information, where you can find help and where you can find respite.  This will be a multi-part post.  It might be dull for those of you who don't have a loved with C.T.E. but part of the reason for this blog is to help those who have to navigate these waters.

1.  Calling it C.T.E.  Most people will look at you blankly.  You can also call it T.B.I., traumatic brain injury.  People seem to be able to wrap their brain around that term.  So, my husband as T.B.I. with dementia.  I say that, people get it.

2.  Applying for Social Security.  There is Social Security Disability, which is based off of how much one has paid into the system by working.  If your loved one doesn't have a long work history, you pretty much don't have a prayer getting this.  I know, I know "but Terry, drug addicts get Social Security, all kinds of deadbeats get it." Yup, that's why my husband, who doesn't have a long work history, can't get it today.  Apply yourself the first time.  You will get turned down, Social Security Admin (SSA) always does that.  After you are turned down, get an attorney who specializes in SSD, they are worth it (or at least so I am told).  SSI is Supplemental Security Income is the elderly, blind or disabled that have little or no income; same procedure as applying for SSD.  Go to www.ssa.gov for more information.  BTW, after 3 attorneys and over 25 years, I am still trying to get SSD for my husband.  Yeah, I'm stubborn.

3.  Check out the Alzheimer's Association at www.alz.org.  They even discuss C.T.E. under their "What is dementia?" page.  Also, the Alzheimer's Association has forums you can participate in, which are very helpful.  There is a 24/7 number to call and talk to a live person.  The Alzheimer's Association has partners with Medic Alert (the bracelet people) and offer the Safe Return program.  If your loved one has dementia and wanders, this program is well worth the money.  Be sure to check it out.  There might be support groups in your area for caregivers.  I am checking out the ones in my city in August.

4.  If you are a person who worships regularly, be sure to talk with your clergy person about how your house of worship can help. This is not a resource we often think about but it is well worth exploring.

5.  Consider the Family and Medical Leave Act if you need a lot of time off work to care for your loved one.  This is unpaid leave but at least your job is kept open for you.  A Google search of Family and Medical Leave Act (FMLA) is helpful.

6.  Start checking out the in home care services that are available in your city.  If you have insurance, take the time to call your insurance carrier to find out what they cover for in home care services and residential care (nursing homes).  For in home care, there is skilled nursing care and companion care (this might go by other names).  Companion care is a non-nursing person who comes into the home and helps with personal hygiene, meal preparation, companionship, light housework and perhaps even transportation to appointments.  Find out about what is available before you need it.

6.  The Home Environment.  I found that keeping the house quiet in the evening helps with sundowning.  I also try to keep my husband on a regular schedule so he has some stability, which is calming for him.  Also, even if you can't go out as much because you need to be with your loved one, keep contact with family and friends through phone, e-mail and social media.  Be sure to do things for yourself.  I find it VERY difficult to take care of myself.  I frequently run myself ragged taking care of my husband, working my full time job, working my part time job and researching his C.T.E.  I have my crochet and my genealogy work, which relaxes me.

7.  Do things to make your life easier.  Don't have time to write checks for bills?  Use your bank's bill pay system.  Are there things that need done around the house (small repairs, etc.) get them taken care of now if your loved one isn't too far along.  By anticipating your future needs, you can hopefully eliminate stress further down the road.

8.  Check out Teepa Snow.  Teepa Snow has been working with dementia patients for over 30 years.  I went to an all day seminar with Teepa and found the experience eye-opening on dementia and how I can care for my husband better.  Teepa's website is www.teepasnow.com and she also has a number of You-Tube videos out there if there isn't a seminar near you.

Wow!  I've listed quite a bit here!!  If you have questions, please post a comment.  I do read each comment and I will respond as best as I can.

Blessings to you all!