Whats in your Caregiving Toolbox?

Whats in your Caregiving Toolbox?  First off, what is a Caregivers Toolbox?  That sounds like an easy question to answer but in realty it’s not so easy.  For every caregiver who has a caree there is a toolbox designed and filled with tools to best help them with that one particular caree.  Now of course pretty much all caregiving toolbox’s will have some of the same tools, but not all tools fit all carees issues.  Starting to get the picture?  I’m going to use myself as the example here, if you know my story put in your ear buds and listen to a Caregiving.com Blog Talk Radio show for a few then come back and we’ll pick up right here.  For those who don’t, in early 1993 I was rear ended at a high rate of speed, which in turn caused some disc damage and major nerve damage to the lower 3/5 ths of my back.  This in turn has caused chronic pain which persists 24/7.  The pain is around 5-6 out of 10 even with an internal pain management pump, a narcotic and several other medications, the issue is that unless some new treatment is found, this is where I will be or will continue to worsen from here on. Okay in my Caregiving Toolbox and a very big toolbox it is, are the standard tools, some specialty tools and several specialty mechanics (doctors).  The first few items are those that everyone has in their caregiving toolbox and hopefully use, in my case a daily basis.

My Caregiving Toolbox 

Spouse – I put my spouse separate from parents, siblings and children because they are the “Go To” when it comes to ones medical issues, or the one you call first when the issue is major.  They are the ones that listen to you grunt, groan, when you visit the white porcelain god at 3 am, or you wake up with the Charlie Horse from hell at 3:34 am and then can not get back to sleep so stays up with you.  They are the ones who site at the hospital bedside when you’re in due to various reasons.  The ones that just having them there takes the edge off (sometimes, Sorry).

Parents, Siblings, Children (Everyone hopefully has someone) – This group is  important because when you go home at night and your done with the hospital appointment, the doctor, end of the workday, lab work or radiology and your nerves are on edge, your tired beyond belief, their the ones who will drop everything to listen to you either in person or over the phone.

Doctors, Surgeons, Specialists (Medical Personnel), Hospital – This group would include your doctor, of course your Primary Care  Physician (PCP), Cardiologist, Neurologist, Audiologist, Pharmacist, Nephrologist, Pulmonary Specialists, Psychologist, Psychiatrist, Physical Therapist, __________ (enter your specialists here).  Many hospitals have an information department where you can pick up flyers, booklets, some have DVD’s and more on the more common ailments.  In the main hospital here their resource, library department is located in a room about 20′ x 40′ and its filled with information

Friends, Co-Workers (We all have at least one of these) – These are the secondary team members to our spouses, moms, dads, etc. If their true friends, their still right beside you for moral support if their not they are most likely the first to have stopped calling.  They bring by the beer and watch sports with you when your laid up, you know all the good stuff.

Online Family and Fellow Bloggers – The difference here is the first of these are with you through thick and thin because hey all they have to do is close the tab and your gone.  The latter of the two are there, they talk now and then but just not enough contact to call them, Online Family.  Just kidding, I have found that my online family and I say this with all my heart, they sometimes know what going on with you before your own family does by reading your blogs.  I would not give up my online family for anything.

Internet, Apps, Books, Research Material – I placed the Internet and apps first here only because that is where society is headed, into an information technology based society.  The internet is highly useful, if you get to the right site.  Some sites are riddled with invalid information.  Here are a few ways to confirm a site is valid, check to see when the site was last updated.  How old is the information contained in the site?  Go to the “Contact Us Here” link, click on it and the return address should have the company name in the title (ex. Your on Bayer Aspirin’s web page, you go to send them a message and the return address if something like, “middleage.xxl.net” DO NOT TRUST IT!!  Some sites will have the companies logo, slogan, maybe even product images then you send them a question to which they respond and are asking for your debit or credit information. Get the idea?  I get 2-3 of these every week.  Be Careful.  Apps – This should almost be by itself, don’t believe it?  In the platform I use, “iTunes” under search apps, I found that if you’re searching the work “Medical” there are 2,200 apps for that, “Research” 2,199 apps, “Epilepsy” has 48 apps and under “Brain” another 2,200 apps.  Use these apps as information or a place to gather questions for you next PCP appointment, do not take anything you read or hear as fact, check out all information obtained with your doctor’s office first before trying something new.  Finally, don’t forget about the old-fashioned library, thousands of books on thousands of subjects all on loan for free.  You also have your local book store, if you don’t see a title or subject you’re looking for ask an employee and they can look it up on their computers and have it shipped in if they find one you like.

Groups, Foundations, Insurance Companies – Agencies such as The Red Cross, AARP, AAA, and groups like MADD (Mothers Against Drunk Drivers), foundations being The Epilepsy Foundation, The Heart Association and so forth all have contacts and knowledge of where to go to get help in their specific realm.  Guarantee The Heart Association can tell you what’s the best hospital to have brain surgery is. They all also carry literature on their specific disabilities or causes and will point you in the right direction to get it if they don’t.

Physical Activity – The following is a short list of physical activities that can be used for medical issues to help relax, restore and renew ones body and to help in the recovery process. These activities include but are not limited to, Yoga, Meditation, Massage, Exercise, Walking, Biking, Hiking, Acupuncture, Acupressure, Physical Therapy, Swimming, Tai Chi, Treadmill, with the majority of these requiring no special equipment.

Lawyers – I really hate to add this one but I must say your lawyer can in fact be of benefit to you.  My lawyer and my pain specialist referred me to a psychologist when my depression started getting really bad.  It so happen that he was in my book one of the top in his field.  He not only worked with me alone, but also with myself and my wife and myself and my son.  The word lawyer may have a negative sound to it, but most of them know where to go to get something done.  Which doctor(s) to see? where to go to get therapy? etc. and mine knew just where to go.  You also have the court system, Workers Compensation system, Social Security or disability to deal with believe me you’ll want someone who knows what their do to help here.

     All of these tools and I’m sure there are many more that I have not touched on can be used either alone or together to give the best possible recovery available.  If you feel you or your caree is not getting the proper treatment, please step up and say something.  You are in control of the project your building and you are responsible to put the right tools into your toolbox and to make sure that if a tool is not working right to either return it, or say something to get the tool working the way it should be.  Some Caregiver Toolbox’s are small and need only a few of the items listed and from only one or two of the categories.  As for me and my medical issue,  I use several items from all but one of the categories mentioned.  What about you, whats in your Caregiver Toolbox?  What should be in it that I left out? something happened or is going to happen before my own family.  I get done with an appointment and I need to vent, I’m sorry            sometimes it just can not wait the hour or so it take to get home and I know my online family is there and they know real well what’s been going on and how best to help.  Through my wife I found Caregiving.com a site that treats you like your the only one talking even if there are 10-15 people in the group.  There are so many similarities between medical issues that even if the primary issue is not the same, the underlying side effects are.  So there you have a place to start talking with others, a lot of others.  We have people from Georgia, Florida, Kansas, Chicago, Texas and California (North and South) and that’s just some            of my family members in one group.

Online Sites and Illness Related Applications (Apps) – This sounds like a pretty straight forward group, yet it can have one of the largest descriptions.  This group includes medical, personnel, your hospitals any and all webpages you go to to obtain information about your carees health issues and how to help them.  An example her is on my insurance/providers (Kaiser) website you are able to communicate with you PCP,  which I did recently when my edema was out of control and I sent 6-7 emails to my PCP and received answers withing 24 hours, this saved me considerable time by not having to go into the office for appointments and I received all departments in the facility within a 24 hour period.

As you can see by the tools I use, your toolbox can be a large industrial size mega toolbox with a AM/FM stereo, mini fridge, bottle opener, the works or it can be as small as a lunch box, this all depends on the disability and the severity of it.  So take a look at the tools you use, I’m sure there are more than you thought and compare it to the list above.  What tools do you use that I don’t?  Are there tools listed you had not thought of and will be looking into?  Feel free to send a comment and let me know if I missed anything.

“Pain without Humor is just Painful”

– kreisler