I intended to do 2011 reflections on December 31. A reasonable date for such things. However, between hubby’s surgery, bringing Robert to our house for the long New Year’s weekend and being just a tad tired, reflections  got moved to 2012.  Reflections at the end of 2012 just may get moved to 2014. It’s hard to predict but be prepared.

I was a little apprehensive going into 2011. Just days before, I had turned 50 and I was disappointed I hadn’t yet published the book I was working on for so long. Don’t get me wrong, I enjoyed my 50th birthday with a family celebration in my favorite place – Disneyland (too bad I didn’t know G-J then!) but  I was being hard on myself for not finishing the book.

Heck, I had worked on it for only ten years, maybe I should have been easier on myself. 

I wasn’t sure what the new decade would have in store for me but I knew I was happy with my family, I was committed to caring for Robert, and I was employed. I am thoroughly grateful for all of that.

To my delight, 2011 brought so much goodness that I almost feel guilty about it! It also brought some difficulties but that is to be expected (this is life, after all).

The good stuff first (in no particular order):

1. I met some amazing caregivers through caregiving.com (you guys!). I accidentally found this site at the beginning of the year when I was trying in earnest to link my blog to related sites in order to grow my readership. Caregiving.com isn’t a site to link personal blogs but instead offers opportunities to write about our caregiving situations and to develop friendships and gain strength and inspiration. I also got a few tips on incontinence. It’s pretty awesome.

2. My blog was picked up by Sacramento Connect which is a network of local bloggers through the local paper, The Sacramento Bee. Heidi (Atticus Uncensored) kept reading my posts and leaving me comments. She loved reading the blog and she wasn’t even a relative!  We became online friends (and then realized, hey, we’re in the same city, we could become actual real-life friends). So we did.

3. Heidi introduced me to a group of inspirational people who are entrepreneurs, artists, moms and bloggers and asked me to join their Facebook blogging group. I learn something from this group of talented people every time I read their blogs and am grateful to have them as readers of my blog. (If any of you have your own personal blog, please let me know if you’re interested in joining the group and I’ll have them add you).

4. I published my book!!!  Much love and gratitude goes to my hubby, my daughter, Joelle Stone and our very own Denise for their undying support and gentle (well, sometimes not so gentle – you know who you are) nudging for me to get this done. And, it only took me ten years instead of eleven .  .  .

5. I learned about epilepsy. Being the older sister of my 46-year-old brother who has lived with epilepsy his entire life, you’d think that would be impossible. It wasn’t! I had a lot to learn and met some remarkable people (and organizations) along the way. My own personal challenge to complete 30 days of epilepsy awareness was something I was extremely proud to complete and am already looking forward to doing it again this November.

6. Robert moved from a Residential Care Facility for the Elderly to a smaller, more age appropriate group home. (As you all know, it turned out to hardly be a perfect fit but we’re working on that).

7. I became a Staff Writer for a caregiver magazine and branched out to another website to write as well (getting paid to write – wow!  A dream come true). It’s a small start but I am thrilled to have to list some writing income on my taxes! (Note to the IRS: it’s a very small start).

8. I was interviewed a few times by Denise on Blog Talk Radio and was so nervous the first time I wouldn’t let anyone tell me if they would be listening (not even my own family who secretly listened in another room). I sat in my home office, closed the door and talked with Denise, pretending it was just me and her on the phone. I was so nervous I actually thought there was a good possibility I would pass out during the 30 minute interview (I didn’t; thanks for asking). I was grateful I couldn’t be seen because I’m pretty sure my proclivity to blush when nervous would have been quite evident.

9. 2011 was also full of reminders of what a wonderful, beautiful family I am blessed with. We laugh, we enjoy time with each other (most of the time) and, most of all, love each other no matter what.

2011 had its difficulties (the big ones were extraordinarily heart-wrenching work decisions and health problems for my beloved mother-in-law) but I would like to let those difficulties stay in 2011 and focus on the positive moving into 2012.

Wishing all of you a very happy and joyous new year filled with great possibilities for love, friendships and success (and many laughs along the way). I’m happy to have all of you as part of my family.

During the show, Claire answered a question from our chat room about managing incontinence care and two questions emailed to me from a listener.

Claire will join me on Your Caregiving Journey on the fourth Tuesday of every month at 11:30 a.m. ET. If you have a question you’d like Claire to answer, send me an email. Or, join us in the chat room during a live show.

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What is his life expectancy? (Yes, I worry about this.)

Where’s the silver lining?  Where are the positives that I can hold on to? He remembered his roommate’s name last night but needed confirmation that he was correct. He was! That’s progress but still disconcerting. We’ll put that in the “plus” column anyway.

Robert’s incontinence is getting worse (more frequent accidents in the daytime) but, on the plus side we may have found a solution for the nighttime incontinence. See? Silver lining! I am having him try out nighttime briefs that are kept closed with adhesive instead of the pull-up type. One Aide has reported that the sheets were dry the following morning. Yay! Another one for the plus column.

(I don’t have any more reports since that first one because why would the New Home want to inform me about anything like that? After I’ve asked them a hundred times to communicate with me? Me and my crazy expectations. Enough of that snarkiness – trying to stay positive here).

Back to the positives: Day Program called today to discuss the increased incontinence and leaking onto his clothes. (In case you missed it, the plus in that sentence is that they called me.) Day Program suggests regularly reminding Robert to use the restroom. This is a great idea but (as they kindly put it) Robert can be “pretty head strong about his independence.” What a nice way to say he’s a stubborn hard head! After talking with Robert tonight, he seemed to be on board with the idea which is heartening. Robert gets really embarrassed when he has accidents so I am willing to try anything to prevent them. I greatly appreciate the Day Program being proactive about this (plus, plus, plus!).

(The New Home hasn’t been proactive about anything except they did install that “bell” for Robert after his latest fall. He’s supposed to use it before he gets out of bed. As I suspected, he uses it when he’s in bed and wondering where his medication is. And when he needs to throw something in the garbage. And when the television remote was lost he used it to ask the Aide to change the channel. He’s never used it before he gets out of bed. Gee, I wonder who told them that would happen??)

Oops, slipped away from the plus column for a minute. . .

In spite of the increased memory and incontinence issues, Robert continues to tell jokes. He makes himself (and others around him) giggle several times a day. The smirk he gets on his face when he says “just joking, just joking” tells me he delights in making other people laugh.

It doesn’t get much more positive than that.

Wait a minute . . . sounds like me on a bad day. (Shhh! Don’t tell my hubby I admitted that!) 

Today I received a call from Day Program telling me Robert had an “accident” and since they didn’t finish the sentence with “and we called 911” I knew they meant he had wet through his protective brief. The only reason I was called was they couldn’t find his bag with the spare clothes and briefs I had left on his first day. Eventually, they found them and Robert was back to being dry. It didn’t come without a struggle, however.

New House Manager (who isn’t so new anymore but is still fabulous) called five minutes after I hung up with Day Program. See what I mean about fabulous? She communicates!!

“Sorry to call you at work, Trish.”

That’s okay. Call me anytime. What’s going on?

“I need your help with Robert.  He wasn’t cooperating with Day Program about changing his clothes but he finally did. He’s also been yelling at the House staff and not letting them help him out when he’s messy in the bathroom.”

Ugh. When Robert is “messy” in the bathroom this isn’t just a matter of him wetting his protective brief. This is Robert trying to wipe himself (and his brief) after you-know-what with one square of toilet paper. I didn’t say roll. One square.  There are times to be thrifty but this isn’t it (nor is it when shopping for shoes. Just for the record.).

I’ve been with Robert when this happens and usually have to shower him to get him completely cleaned up and germ free. I pull on disposable gloves, imagine myself walking on a sunny beach and ignore any unpleasant odors trying to make their way into my brain. This is a nasty job and what makes it worse is having to convince a stubborn Robert that he needs a shower or at least needs to be wiped clean with a lot of wet wipes. Robert is resistant with me but eventually relents. I think being the older sister has some clout (although Other Brother seems to have more clout with Robert than even I do!).

With the New House staff, Robert gets mad and refuses to accept their help. He has started to yell at them and call them names. I’m pretty sure the conversation goes something like this:

“Robert, let me help get you cleaned up.”

“I don’t need help.”

“Robert, you do need some help. Let’s get you in the shower.”

“GO TO HELL, STUPID HEAD!”

“Robert, I’m going to leave to let you calm down.”

“Okay. God Bless You.”

Now, I’m no religious expert but I’m pretty sure “Stupid Head” and “God Bless You” shouldn’t be in the same conversation.

New House Manager is calling me for help because she knows Robert will listen to me. Usually. Unfortunately, I had to work late tonight and won’t be able to see him until tomorrow but I will talk to him. I will have to put my “mean mom” hat on and be very stern and tell him he can’t yell at the people trying to help him and he needs to let them help him get clean and germ free.

He will probably tell me that he didn’t say those things; he only thought them. Well, hon, people can hear you thinking.

I do suspect he’s embarrassed about the accidents which is why he acts out. His impulse control is worse than my teenage son’s so there isn’t a permanent fix to the yelling problem (that I’ve figured out anyway). I’m sure once I talk to Robert, the situation will get better in the short term but then Robert will need another reminder in a month or two. Hopefully, New House and Day Program can understand this and not threaten to evict him.

If my talks don’t work, I may have to pull out the big guns and have Other Brother talk to him!

Lots of people use “protective underwear” or “briefs” (aka, diapers for adults). Incontinence is a huge problem for many people whether it is an ongoing disability, a temporary health problem, age-related or something else.  Anyone who has shopped in a drugstore knows there is a large amount of space dedicated to “protective underwear.”

In Robert’s case, he is 45 years old, has uncontrollable epilepsy, has had a couple of brain surgeries and is on several anti-seizure medications. Because of the surgeries and medication and seizures, Robert’s intellectual capacity has diminished over the years. He was able to attend a two-year college after high school, which took him several years to get through but he did attend and we were very proud of him for doing so. Now he is considered “mentally disabled.”

Robert can have conversations (you have to wait patiently for his responses, though), he understands what is expected of him, he plays a great card game but there are certain limitations to what he comprehends. Within the past two years, he has become incontinent on a regular basis. Robert wears “protective underwear” day and night. Extra large, extra absorbent.

What the makers of these disposable garments do not tell you is that there is not a 100% leak proof product (if there is, I’d love to know about it). Robert still has accidents. Usually at night, but sometimes during the day.

Robert sometimes wets himself enough to spill out of his “protective underwear” and leak onto his jeans or his pajamas. Usually, this is because he can’t make it in time to the bathroom (by the time his brain has caught up to the “oh gosh, I gotta go” message, he’s already gone) or he was concentrating too hard on a bingo game or he was sound asleep.

Robert knows he needs to change when this happens. However, no matter how many times I tell him to put these wet jeans or pajamas in the hamper, he folds them up and sets them out to wear the next day.

I finally was so frustrated with him when I found yet another pair of wet jeans neatly folded onto a chair while he was putting on his pajamas that I asked him why he did that. The hamper is just as close as the chair! Why are you putting wet (let’s be blunt: not just wet – urine soaked) clothes on the chair to wear tomorrow? Why??

“They’ll be dry by morning.”

Oh.

Of course, that makes sense to him. Patience, Trish, patience!

So, again, we have the conversation about putting clothes in the hamper everyday. If you wore it, put it in the hamper. Dry or wet. Don’t put pajama bottoms back in the drawer (a few times of refolding pajamas only to realize they were soaking wet taught me to smell before touching). Don’t set out the shirt you wore today (and have a bit of breakfast, lunch and dinner on), for tomorrow.

“Okay, Trish.  Can we play cards?” Hmmm. Now he’s just humoring me. Oh, well.

I realize Robert will probably not ever fully grasp the idea of wearing a clean set of clothes everyday. My solution has been to wait until he’s busy in the bathroom, then to go through his closet and check his shirts that he has neatly re-hung after wearing and, if they have the tell-tale sign of wear (the wrinkle in his pocket where he keeps his glasses or evidence of a stain), I quietly place them in his hamper for washing. I sniff his jeans and the clothes in his dresser and remove as needed. The sweet laundry lady at this Care Facility does the same and, between us, Robert wears clean clothes.

Most of the time. 

I can remember managing her incontinence like it was yesterday. Incontinence has a way of staying with you. She wore Depends during the day, which she hated. The dressing-for-the-day ritual included her throwing the Depends against the wall and stating, “I hate that thing.”

Getting her to wear the Depends was nothing compared to changing the Depends. I remember one unfortunate episode when she began disrobing because of an incontinence episode that, unfortunately, was still occurring. As she walked across the bathroom and left, well, a trail of incontinence, I followed behind with paper towels and wash cloth.

Evie was a very proud woman. But, the Depends and incontinence humbled her. It humbled me, as well.

Managing the incontinence is not for the faint of heart or for those with the sensitive stomach. It’s kinda smelly, pretty gross and awfully embarrassing.

It’s also not something that you can really speak about. So, you go about your day, doing what needs to be done. Today, let’s talk about it.

So, tell us: How do you deal with your caree’s incontinence?

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Donna W., one of bloggers, sent the two photos, below, of a Caregiving Étagère, the hub of her mom’s room for her supplies and care. She also sent a photo of the communication board she created for the respite caregivers to use while she was away on a trip in December.

So… what’s in your caregiving closet? We’d love to see!

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The purpose of your caregiving closet is to organize personal care items that you use daily, regularly and/or may need at some point in the future. If you and you caree live in separate households, you may want to create two closets–one for each household.

While the initial set-up may take time, you’ll find that having an organized closet that has just what you need, when you need it, is a life-saver. The closet also will come in handy when you take a break; your back-up will be able to step in more easily because the necessarily supplies are organized and handy.

So, here’s the list of products and supplies for your Caregiving Closet:

Over the Counter Medications
Acetaminophen – chewable tablet, liquid and suppository
Anti-inflammatory (ibuprofen/naproxen sodium)
Antibiotic ointment
Stool softener
Gastrointestinal medication (client preference or diagnosis driven)
Antihistamine
Anti-diarrheal
Weekly pill reminder box

Diabetic supplies
Glucose tablets
Blood sugar monitor and supplies
Extra insulin and syringes

Oxygen supplies
Extra portable oxygen tank

First Aid supplies
Instant hot/cold packs
Band-Aids
4X4 gauze pads
Tape
Kerlix
Ace wraps
Normal saline rinse
Sling with safety pins
Scissors/tweezers
Sun screen
Insect repellent
Lip balm
Body lotion
Hat/umbrella
Digital scale
Digital thermometer
Automated blood pressure system

Incontinence supplies
Washable bed protectors
Briefs
Perineal care wipes
Protective/barrier cream/ointment

Emergency supplies
Flashlight with extra batteries
Battery powered radio
Blankets
Change of clothes
Extra 2 day supply of prescription medication
Bottled water/Gatorade
Snacks like protein bars/nutritional drink supplement

Safety preparation
Medical Alert system (pendant)
Phone programmed with 911
Emergency numbers placed by phone
Hand held shower head
Shower chair
Non-skid mat for shower/tub
Toilet frame/riser
Grab bars
Soap on a rope
Double sided tape to secure throw rugs

Cognitive safety preparation
Door, bed, chair alarms
Special door locks
Lock up – medication, alcohol, cleaning supplies, guns, etc.
Alzheimer’s safe return system
Alerting police of senior situation

Vial of Life (Ready Reference card)
Medication list
Allergies
Physician list/phone numbers
Diagnoses
Contacts/phone numbers

To ease in re-stocking, hang a list of the products and supplies in your closet on the closet door. And, for your convenience you can download the list of supplies and products to save and print.

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You can listen to the show via the player below. Some highlights:

1. Keep a journal about your care recipient’s care needs, including how often they use the bathroom.

2. A change in your care recipient’s toileting could indicate a problem. Call your doctor if your previously-regular care recipient goes 24 hours without a bowel movement.

3. Visit this website for more information: www.aboutincontinence.org/

Our show closed with tips from Jeannie on which products to use to manage incontinence. I hope you find the show helpful; please feel free to share your questions and stories in our comment section.

Image via Wikipedia

by Gary Hirsch, adviser to online incontinence care products provider SecurePersonalCare.com. The following article, Go Green & Save Money on Adult Diapers in One Simple Step, originally appeared on Gilbert Guide and is re-printed courtesy of Gilbert Guide, Inc. Copyright © 2009, Gilbert Guide, Inc.

The economy isn’t the only thing that could use a boost: so could your diaper. Past topics in this column have discussed reducing your carbon footprint with adult diapers and ways to try incontinence products before you buy. But did you know you can save money and reduce your consumption of adult incontinence products by making one simple change?

Adult Diaper Doublers
In this post, I want to discuss the benefits and uses of booster pads, which are commonly referred to as “diaper doublers.” In a nutshell, a booster is an absorbent rectangular pad that is constructed without a plastic barrier so that liquid can easily pass through it. Often it is wrapped or covered in the same type of non-woven material that is used as cover material for the diaper.

The absorbent material is usually a blend of fluff pulp (same as in the diaper) and may have some polyaculate or superabsorbent polymers mixed in with the fluff—it is that absorbent stuff in the middle that really can help make a difference in both the performance of your incontinence product, and thereby your rate of consumption and the amount of money you spend on incontinence care overall.

These booster pads come in different lengths and widths sized to fit comfortably within the diaper or undergarment. When purchasing, check for the words “maxi” or “extra-length” and the accompanying sizing description to better understand how they’ll work with the product you currently use. It can be difficult to find boosters in some retail or mass-market stores. Your best bet for finding diaper doublers is an online store, preferably one which offers a sample so you can try before you buy.

Diaper Boosters Stretch Your Dollar
Everyone’s talking about economics these days, and as I mentioned earlier, using boosters can be a very cost-effective way to manage incontinence, since they can often help you cut down on the number of diapers you use by providing extra absorbency for urge and stress incontinence.

Additionally, using a booster pad at night can help extend the total absorbent capacity and comfort of the wearer depending on the individual level of incontinence. I have found for most store-bought diapers, including brands from Tena and Kimberly Clark as well as private-label brands, that a booster inside their diapers and protective underwear (e.g., Pull Ups) can greatly improve the longevity of the product and reduce cost. A good booster is far less expensive than double diapering (putting one diaper on top of another while cutting holes in the plastic of the diaper on top), not to mention much more comfortable, with less bulk.

Booster pads are available from Secure Personal Care and other sites that offer Attends Health Care products. Look for a category named “booster” or “diaper doublers.”

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