Where Did This Come From?

I'm doing something a little different today. 

I'm winging it.

Usually, I try to write about a current situation or something inspirational or something amusing (like slipping Robert a veggie burger). 

Tonight . . . I don't know what's wrong with me so I'm just writing.  I was reading some posts from other caregivers and feeling very sappy and then started to cry.  I haven't cried in ages and actually started to think there might be something wrong with me.  I mean, when my dad died I thought I would eventually have a day of crying at some random, inopportune time, but that never happened.  Had I somehow hardened myself so much that I can no longer cry?  What happens to a person's tear ducts if they don't cry every now and then?  Do they seal up from lack of use? 

So, what's going on with me?  I had a productive weekend working on a project near and dear to my heart but I was pretty frustrated with Robert this weekend.   I want to make his life a bit easier but I don't want him to be so dependent on me and my husband that it's harmful to him.  He's used to stopping by Starbucks with me after I pick him for the weekend and we get a Chai tea for me, a regular ice tea for hubby and chocolate creme Frappuccino for him.  Before we even made it to the car this weekend, he asked if we were getting a chocolate shake.  It kind of bugged me because what started out as a "treat" is now something he's come to expect.  I told him we can't get that every single time I pick him up. 

"Why not?" he asked.  Well . . . because, we just can't, that's why.

Later in the weekend, he wanted me to hand him his pajama bottoms.   They were in the hallway on his walker, just outside the bathroom.  I was in a whole other room but close enough to listen for him if he had a problem. 

He asked me to hand him his pj bottoms. 

I'm in the other room.

I told him he could get them and he said, "but I'm sitting down."  Well, so am I and I'M IN THE OTHER ROOM! (Don't worry, I didn't actually yell at him).  He pondered this dilemma and then got his own pj bottoms but I don't think he was very happy about it.  I want to make his life easier (like by helping make sure he wears clean clothes or buying him shirts that close with Velcro instead of buttons) but I don't want him to be too dependent if it's not necessary.

I don't want to be taken advantage of, I guess.

Today, I had a crappy day at work.  It's been stressful at work because this is my busy season (reviews, budget, etc.) and there are just days that are tougher than others (or maybe it's just they all build up or maybe it's because I enjoyed the writing project so much this weekend and "day job" was a stark contrast to that). 

Aside from that, my mother-in-law went in for a heart procedure today (she's fine) and didn't think I was stressed about that but its possible thinking about her may have added to my doldrums.

Plus, Wayward Son is leaving in one week for Air Force boot camp.  His going away party is this weekend but then he's leaving next Monday.  He's certainly not doing anything lately to make me miss him (staying up all night playing video games, waking me up in the middle of the night as he forages in the kitchen, grunting greetings instead of using actual words).  As irritated as I am with him, maybe the thought of him leaving is bugging me too (although I'm really looking forward to using his closet).

Who knows.

All I know is I'm just down in the dumps and find myself with wet eyes at my keyboard.

I guess my tear ducts work after all.

Caregiving Solutions: It's the Little Things

There are big challenges in caregiving.  Making sure your caree gets the right medications, fighting with insurance companies to get these medications or necessary medical procedures, completing disability paperwork (ugh!), or finding a suitable living facility for your loved one.

It’s great when help is available for these big challenges but I have a special love for those little things that make life a little easier (aside from the obvious, like coffee and our lovable pets).

A few years ago when Robert was in a Skilled Nursing Facility, the occupational therapist changed Robert’s regular shoelaces with shoelaces that never untie. 

Oh my god, I was so happy you’d think he handed me a basket full of Starbucks gift cards (I do like my coffee).

Robert loves plain black tennis shoes.  He’s worn the same brand and style for years and years (don’t worry, he gets new shoes every now and then but they are the same style and brand – hopefully, they never discontinue that style)!  These shoes lace up and Robert had increasing difficulty bending over and having the dexterity to tie the laces. Of course, they were always coming untied (you would think the job of shoelaces would be to stay tied). 

The occupational therapist came along and, without fanfare, changed the shoelaces to what I call “magic shoelaces.”  Woohoo!  Happy dance!  Robert gets to keep the style of the shoe he likes and doesn’t have to worry about tying and untying the shoes (or having someone else tie them for him). 

It was love at first sight for Robert too and he actually became irritated with a doctor at a recent neurology visit because the doctor untied these laces without a thought.  (We got them tied back up and Robert was happy once again while the doctor apologized for his mistake once he saw how important these were to Robert). 

Another recent find that has brought just as much thrill to us: button up shirts with Velcro.  I’ve written about Robert no longer being able to button one of his sleeves.  Robert’s preference is button down shirts (pulling a t-shirt over his head is an impossible task for him) but the buttons take quite a lot of concentration and it takes him a long while to dress.  I began to wonder if bigger buttons were going to be necessary meaning my worst fear would be realized:

I would have to learn to sew!

Thankfully, I found Buck and Buck Clothing Company based in Seattle (yes, that’s free advertising!).  They make all sorts of handy clothing for the disabled and elderly but the dress shirts for men caught my eye.  Buttons on the outside; Velcro on the inside!  Bonus: they come in Robert’s favorite colors – blue and white.

Robert tried on his first new shirt last weekend and, aside from not being able to see the white Velcro on a white shirt (an easy fix with a permanent marker), he loved them!  Dressing took much less time than normal and he was even able to button both his sleeves. 

Robert declared the shirt “excellent” and I ordered him four more. 

Finding help for the little things make tackling the big things so much easier, doesn't it?

Have you found anything that is so simple yet makes such a huge impact on your or your caree’s life?  Please share in the comment section below while I keep doing my happy dance!

What is it like to be a “Care Receiver” instead of the Caregiver?

Last night I had a dream about caring for Robert. 

In my dream, Robert had a seizure and ruptured a disk in his back.  This was his last straw. 

The dream had Robert at my house for his weekend visit and he was uncooperative and surly.  He was angry about his condition. 

Robert refused to wear his helmet and threw it across the room.

Robert refused to use his walker and walked without it but with great difficulty and continued to fall into (and knock over) everything.  He knocked over the piano (I love how dreams put odd things into our minds – we don’t even have a piano).

Robert wouldn’t do anything I asked him to do.  He questioned why he had to have all of these problems.

Robert angrily asked why he couldn’t be normal.  

It was a nightmare.

Thankfully, in “real life” Robert is a good care receiver.   I often wonder what it is like for Robert to be so dependent on others (I know I would have a hard time depending on others: kids be warned!).  Robert really doesn’t seem to mind.  He knows he needs assistance in buttoning his shirts (although I recently bought him shirts with Velcro on the inside and buttons on the outside.  It looks like a normal shirt but he won’t have to mess with buttons!  I can’t wait for him to try them out this weekend). 

Robert relies on others to make him a good meal, keep him stocked in his favorite drink of 7-Up and, occasionally, treat him to ice cream. 

Robert never complains that he has to have a sink bath when he’s at our house or if I have to help him get cleaned up after an accident. 

Robert never asks “why me” because he believes in his heart and soul that God put him here for a reason and his purpose is to educate others about epilepsy.   His faith never waivers and, in fact, says grace for the rest of my family if we happen to be eating something and didn’t say grace first. 

Only when he says things like “I was trying to make you laugh” do I realize the face I must sometimes have on when doing things for him.  Very focused and trying to get as much done as possible (can I get Robert bathed and wash the sheets and get the sofa bed turned back into a sofa — all at once?), but without a smile.

Robert has accepted that he needs others to help him and tries to lighten the load for his caregivers with a little humor.

It’s amazing how a little acceptance, faith and humor can change a nightmare into just another way of life.  

Robert isn't only a good care receiver but a pretty good teacher too. 

I think I’m ready for more smiles today.

Chocolate Shake or Bowl of Rocky Road Ice Cream? Choices in Caregiving

Tonight, we’re treating Robert to a cheeseburger and fries.  I figured since I have already slipped him vegetarian sausages and a fake burger this weekend, I’d get him the real deal before he realizes what I’ve been feeding him.

Or passes out from meat withdrawal. 

On my way out the door to the local fast food restaurant, Robert called out, “Can I get a chocolate shake too?” 

Hmm.   Well, do you want a shake with your burger or a bowl of Rocky Road Ice Cream for dessert?  You can’t have both (I’ve been down this road before and I’m on to him).

Robert gave me his best “I’m not going to say anything and will just stare at you hoping you’ll change your mind” stare.

While he mulled over his choices and I stood my ground, I thought about caregiving in general and how it is full of choices.  All the time.

Caregivers make choices every day.  Heck, sometimes choices even have to be made moment to moment.  What briefs do I choose for Robert to keep him dry?  Do we use the transport chair for an outing or let him use his walker?  How can I satisfy his taste buds but keep him healthy?  Do I follow him as he walks to the bathroom in case he has a seizure and I have to catch him or do I stop hovering and hope for the best?

Sometimes the choices are between living with dust bunnies or having a spotless house or deciding between cooking a great meal or running out for fast food.  (It’s usually a toss up around here on both counts).

I had my own choices to make this weekend.   Since I was feeling overwhelmed this week, a friend asked if I could shorten Robert’s weekend visit.  What if he came over for just one night instead of two or three? 

For some reason, this option hadn’t occurred to me but just knowing I could make that choice made me feel better.  I don’t have to be “all in” every weekend.  Why not leave my options open?  I knew I had several writing projects to work on and a couple to finish, I was feeling extremely disorganized and I needed some relaxation time too.   

I need to make some choices but I do have options (of course, some people have a different caregiving situation and do not have many options to choose from).

I asked New Home for enough meds for a three day visit but told them I may bring Robert back early.  I chose to pick up Robert later on Saturday than normal (which was made more challenging when he made the unusual move to call me that morning to ask if I could pick him up earlier than I had planned).  I told him “no” and kept to my plan to pick him up later in the afternoon.  He reluctantly accepted my answer but was perfectly happy when I arrived to pick him up later that day. 

As far as keeping the visit short, we chose to keep him at our house over the long weekend but it was nice having an option to cut the visit short. 

I explained to Robert this morning that I had to work on my projects and he would have to watch television or work on his word search puzzle.  Robert didn’t mind those options at all (he loves both activities) and was pleased just to be at our house surrounded by family and our animals that he’s come to enjoy. 

In fact, Robert became so hooked on a “Bonanza” marathon this afternoon he asked if he could eat the burger and fries in front of the TV!  So much for my thinking he needs to be entertained.

As far as Robert’s choice: once he realized I wasn’t going to change my mind, he chose Rocky Road Ice Cream for dessert. 

Good choice.  I may have to choose some of that myself!