Wednesday, June 29, 2011

Tools for Your Caregiving Tool Belt – Navigating Government Programs

We’ve added Education and Navigating Care Facilities & In Home Care to your caregiving tool belt (again, thanks to Denise Brown who gives many caregivers plenty of tools for their caregiving tool belt and is the kind soul behind – a wonderful online support community).

At some point in the caregiving experience, you will most likely need to step into a government office. Before doing so, take a deep breath (or a few) and throw all expectations of common sense out the window.

This is not said out of mean-spiritedness or because I am perpetuating stereotypes without basis. There are many, many helpful people who work at the various government agencies who I cannot blame for the difficulty in navigating these agencies. It is my personal experience that the policies and procedures are so convoluted that two people from the same agency, working in the same office may give you two different answers to the same question!

I’m not here to change the government (although it is on my to-do list) but will help you navigate through a few government agencies as painlessly as possible. (If you’d like to read an admittedly long, yet honest personal experience of dealing with a government agency, my first ever blog post details it here).

The reason contacting a government agency may be necessary is for help in covering the extraordinary expense of caregiving. Depending on personal circumstances, this may or may not be necessary and your loved one may not qualify but it is worth looking into. Caregiving is expensive!

Monday, June 27, 2011

Tools for Your Caregiving Tool Belt – Navigating Care Facilities and In-Home Care

Yesterday, we added education to your caregiving tool belt (and I’d like to thank Denise Brown of for coming up with the awesome concept of a “caregiver’s tool belt”). It’s reassuring to know when caring for your loved one you are not alone and there are resources out there to educate you about the particular disease or condition your loved one is living with. Knowing as much as possible about what you and your loved one is dealing with will help so much when talking to medical professionals – throw intimidation out the window!

The focus today is on resources available when searching for additional care for your loved one. This can include either in-home care or a care facility.

But first comes the decision . . .

The Decision.

The first decision to be made is the type of care needed at this time. It’s important to remember the phrase “at this time” because carees will have different needs as their disease or condition progresses and our ability to help may change over time as well. It’s okay to admit this. All you can do is manage what is happening “at this time.”

Family Support. Although you, as the primary caregiver, are the one making the decisions regarding care it is important to seek out others to help make the best possible decision. If feasible, enlist the support of other family members to help decide if additional in-home care is needed or if it’s time to move your parent (or sibling or grandparent or other caree) into a care facility.

Each family is different but keep in mind offers of help may not come streaming in. As the primary caregiver, it may be necessary to set forth specific tasks each family member can help with. Many people will make vague offers of assistance but unless given a specific task (“please call three care facilities by Wednesday”) it won’t get done.

Sunday, June 26, 2011

Tools for Your Caregiving Tool Belt -- Education

As a follow up to my series about finding a care facility for your loved one (“Where to Start,” “Always with the Checklists!” and “It’s Time to Tour”), I’ve compiled a comprehensive list of resources that may be of help during all stages of caregiving. The process of learning about the condition your loved one is living with to decisions about care either in or outside the home to figuring out government and other agency resources can be daunting. Finding much needed support for the overwhelmed caregiver tends to drop to the bottom of the priority list but cannot be overlooked so I have included support resources for the caregiver as well. Taking care of yourself will ultimately help make you a better caregiver.

Today we will focus on Education.  (Before we get much further, I'd like to thank Denise Brown of for coming up with the awesome concept of a "caregiver's tool belt!")

Being educated about the disease your loved one is living with is a powerful tool. Knowing what to expect from the condition and how it will affect your loved one takes away a lot of the worry when confronted with a new symptom or behavior (as a precaution, anything new should be discussed with your doctor). Education will empower you when talking with medical professionals which can be intimidating for anyone!

Wednesday, June 22, 2011

Potato. Table. Green.

Potato. Table. Green.

Remember those words (there’s a quiz later!).

The countdown is over! Robert saw his fabulous neurologist with the awesome Canadian accent today and the results are in (although so are a lot more questions).

The MRI showed no stroke (yay!!) and actually indicated no change whatsoever since his MRI of two years ago (there goes my medical career). The “large area of encephalomalacia” that sounded so concerning was due to his brain surgeries of several years ago so wasn’t anything new.


So am I nuts for thinking Robert has declined? (For those who do think I am nuts, sorry to disappoint you but this isn’t your proof). Lady Neuro notices the change, too, when Robert can’t walk across the room to get to the examination table without a great deal of assistance. She puts Robert through a battery of physical and mental tests with me hovering, ready to jump out of my skin to help (but somehow restraining myself).

I’ve moved from Helicopter Parent to Helicopter Sister.

Friday, June 17, 2011

The Unknown

“Large area of encephalomalacia” says Robert’s recent MRI report.

Well, of course! How obvious! That explains so much!


Even the wonderful world wide web doesn’t give me much more of a definition than “softening of brain tissue.” I don’t have Robert’s previous MRI report so don’t even know if this is something new and won’t know until we see his neurologist on Wednesday. I just know I wouldn’t want my brain to soften and am doing mental exercises as we speak (not that I even have the foggiest idea if that helps prevent softening).

Because we want to rule out the possibility of a stroke, Robert had an MRI last week. He is having more memory problems, dragging his right foot more than usual and also having trouble using his right hand to button his shirts. (Oh my god. Please tell me I don’t have to learn to sew. Sewing large buttons on each of his shirts would take me so long I’d have to quit my job and hire a small army of seamstresses to accomplish the task. Add to my to-do list: search the internet for large buttoned shirts.)

Monday, June 13, 2011


It’s been a while since I posted but I was letting The Meeting simmer for a while. (These feelings probably also contributed to being a bit too harsh on my wayward son). After a week of reflection, I have decided it is in Robert’s best interest to move him.


You might be thinking there is just no pleasing me (which, if you ask New Home – or Old Home for that matter – that might be their answer). Personally, I think I’m pretty easily pleased as long as my brother is well cared for and thrives in his environment (and I don’t think that’s too much to ask).

Since 2009, Robert has lived in three facilities. The first was a Skilled Nursing Facility because he had a raging staph infection and needed intravenous antibiotics for six weeks. This SNF had caring staff, knowledgeable medical personnel as well as physical and occupational therapists who helped Robert with exercises and provided him the medical equipment and devices he needed.

The most useful of these devices? Shoelaces that cannot untie! For something so simple, these magical shoelaces have contributed to maintaining Robert’s independence more than anything else I can think of at the moment (Robert likes regular lace up shoes instead of Velcro and should be able to have that option wear them if possible).

(See? I was pleased with this facility!)

Tuesday, June 7, 2011


Sometimes I can be a little preachy – just ask my kids. Or my husband, for that matter. Okay, ask anyone who knows me. Today, wonderful readers (and I do think you’re wonderful because I am just amazed I have readers!), you will find this out about me too.

It bothers me beyond belief when people don’t put their full effort into whatever it is they are working on. Why not put in 100% (or more) effort? What makes people just do enough to get by? Why waste talent and energy and intelligence? Why give up just because something might be a little (or a lot) challenging? My favorite quotes are those dealing with persistence, tenacity and never giving up.

“Failure is falling down nine times and getting up ten.” -- Jon Bon Jovi

“Success consists of getting up one more time than you fall.” -- Oliver Goldsmith

As a part-time freelance writer with a goal of doing so full-time, quotes like these have to be my mantras or I would never get anything published.

The topic of effort has been on my mind lately because I find myself comparing the effort Robert puts in to every day activities to an Unnamed Son’s attitude of skating through school (and life). It takes Robert almost two hours to shave, change and brush his hair in the morning (and that’s without a shower!). It takes Unnamed Son thirty minutes to get ready in the morning (one minute to shower, change, brush his teeth, do his hair and put in his contacts and 29 minutes to let the shower run for no reason).

Thursday, June 2, 2011

The Meeting

The post today is brought to you by the letter “C.”

Care Home. Conflict. Communication. Crying (ugh!). Cautiously optimistic.

New Home called me earlier this week to schedule a meeting. Those involved in the meeting would be the Nurse, House Manager, supervisor of house manager, supervisor of the supervisor of the house manager. And me. (Four against one? Is that all you got?) I actually called to invite the counselor from the Regional Center and he, thankfully, was able to attend a portion of the meeting. I think he’s on my side but it’s hard to tell.

Their objective: to “clarify” communication. Gee, brilliant idea.

My one slight irritation is that they beat me to the punch and called the meeting first. I got over that fairly quickly and next went to “bring it on” mode.

The meeting was held today and lasted two hours. Whoa! Two hours of . . . communicating! It started with them stating their objective of providing good care for Robert.

I said that would be great! How about we start with not ever trying to take him to the ER to have a needle stuck in his you-know-what in order to get a urine sample when he can PEE IN A CUP AND WHICH YOU WOULD HAVE KNOWN IF YOU ASKED HIM OR ME?

I felt better about getting that out but it may have led to a rocky start of the meeting.