Tuesday, March 7, 2017

What Would You Do Without Taking Care of Robert?

We all say things that come out different than we had intended. “I’m worried about you” sometimes comes out as “Boy, do you look tired!” Everyone does it but caregivers probably hear more than their fair share of ill-advised comments from good-intentioned people.

Trish, Robert and Richard
Robert is sick right now and, like many caregivers, I keep family and friends up to date on how he’s doing through this blog but also on Facebook, Twitter and Instagram. Robert always gives me a big smile when I take his picture and then loves it when I tell him everyone on the computer is wishing him well and thinking about him.

He’s a big ham that way.

I love the comments and support, too. It is comforting to know so many people love Robert and want him to be his excellent self all of the time.

Every now and then, though, a comment slips through that is well-intentioned but makes me bristle. One of my most favorite extended relatives made such a comment and I know he didn’t mean anything by it. He’s got a huge heart and kind of took us three “kids” under his wing once our dad passed away a few years ago. I love him to pieces.

I really think his question deserves an answer, though.  

“What Would You Do Without Taking Care of Robert?”

I know I am not the only caregiver to be asked this question so let me take a minute to tell you.

I couldn’t respond right away because I was giving Robert his medications and starting his nebulizer so his airway would open up a bit tonight and, oh yeah, I had to put his oxygen on him since his wheezing is loud enough to hear in the next room, but here’s your answer:

If I wasn’t caring for Robert, I would get a good night’s sleep. I wouldn’t need to wake up every four hours to take his vitals when he is sick. I don’t even need an alarm to wake up through the night – the worry about sepsis is enough to keep me in a light sleep until it is time to check his temperature and pulse rate. Even when he is “well” I have to wake up at 5:30 a.m. to give him his medications. A good night’s sleep is a luxury for caregivers.

If I wasn’t caring for Robert, I would be able to work a full week without taking time off for doctor’s appointments, physical therapy appointments and meetings at his Day Program or with his social worker.  

If I wasn’t caring for Robert, I would have a lot more money. The briefs we get through his Medicaid? They’re fine for an hour or so but Robert needs more protection than that. We buy him heavy duty briefs so he doesn’t leak through to his clothes when we go out or at Day Program. We buy wipes for bathroom clean-up and gloves for the same purpose. We go through laundry soap like it’s water and, speaking of water, we go through a lot of that too because of the five or so loads of laundry we do every day. He is on a lot of over-the-counter medications which are not paid for by insurance or Medicaid but they are essential to his well-being. Regular dental visits keep pneumonia at bay so we pay for those too. Robert’s social security helps pay for some things but, believe me, I am not coming out ahead when it comes to his expenses.

If I wasn’t caring for Robert, I would visit the ocean with my husband! Sure, we can take Robert on vacation with us (and have – our Disneyland trips are amazing and memorable and I wouldn’t trade them for anything). Occasionally, it would be nice to go away with just my husband though. Respite care for someone that needs as much care as Robert is tough to come by.

If I wasn’t caring for Robert, I probably wouldn’t feel like Norm from Cheers every time I walk into the pharmacy. Between prescriptions and over-the-counter meds, Robert takes 41 pills a day. Forty. One. That’s sixteen different medications that I keep track of because he cannot go one day without any of them.

If I wasn’t caring for Robert, I might have more intimacy with my husband. Sorry to get personal but sheesh, you asked the question. It is not easy to have the energy for extracurricular activities when I am exhausted by the end of the day. I’m lucky to stay awake for a mindless crime drama or two. Sometimes I cannot even watch shows that require a little brain power because my mind just can’t think about one more thing.

If I wasn’t caring for Robert, I would write more! The topics I write about are usually related to caregiving so I would probably have to start writing about cats or something but at least I would be writing. Writing feeds my soul so I know I would definitely write.

Don’t misunderstand me. I love caring for Robert and I know this is a choice Richard and I made. We do not regret it for a minute. I am grateful that I have been able to get to know Robert more than I ever did when we were younger. I am grateful for Robert for teaching me to enjoy simple things in life and to laugh about silly things. I am grateful for Robert’s smile and his ability to declare everything excellent and my food delicious (even when I know better).

I am honored to care for Robert.

But is there anything that I would do if I wasn’t caring for Robert?

You better believe it.

Wednesday, February 22, 2017

Home Alone

Thursday night: Richard finishes packing for his trip to see Airforce Son before his deployment. Taz sniffs the suitcase, tries to get into the suitcase then paces around the house.

He then pees in my office. (Hey, I’m not the one leaving! Pee in Richard’s office!)

I decide to lose five pounds while Richard is gone. It’ll be easy: stop eating junk.

Field trip! 
Friday morning: I take a vacation day from work and Robert is off to program. Richard doesn’t have to leave until early afternoon so we run to Walgreens to get more supplies for Richard’s leg which is not healing and I get a few things for the house. We watch a couple of our recorded shows once we get back home.  

We both eat a small bag of chips while watching the shows.

Hmm. Apparently, I’ll “stop eating junk” later today.  

Friday afternoon: Matt, our future son-in-law (wow – still practicing that one!), comes over to take Richard to the airport.

I have about 90 minutes before Robert comes home.

First, I turn off the television and can’t believe how quiet it is.  

It is glorious!

I go through my to-do list in my head and start with cleaning my office. First, I tackle the filing that has piled up.

By the time Robert gets home, I have most of it done! Who knew filing would make me so happy!  

Robert is home so I break from filing and go through the usual routine when he arrives home (give him treats to give to the dogs, take him to the restroom, put away his lunch box, refill his travel bag with briefs, get him settled in his recliner to relax and watch Family Feud.)

Back to the filing! To my delight, I get it done before dinner time. Woohoo!

Friday evening: I make mini burritos for Robert and decide I will skip dinner since I had a sandwich during my filing frenzy.

Eventually, I break down and eat a bowl of cereal.

Note to self: work on planning better dinners for us.

Friday night: I get Robert in bed after his dessert of Rocky Road ice cream (he’s not the one trying to lose five pounds!). The dogs and I snuggle and watch television. How is it they can still hog the entire bed even when there is one less person in it?

I set my alarm for 6:00 a.m. instead of the usual 5:30. Robert’s first morning medication is at 6:00 so I can just get up and give him meds.

I’m going to sleep in!!

Saturday morning: I wake up at 5:15. Sigh.

I let the dogs out, make some decaf coffee, feed the dogs and, at 6:00, give Robert his meds. He goes back to sleep; I pay bills and work on our taxes.

This paperwork puts me behind on my cleaning goals but I get some cleaning done before Robert wakes up.

The house is quiet except for the noise of the washer which is constantly running in this house.

Robert wakes up before I can get much cleaning done but at least I finish two rooms.

Saturday afternoon: After I giving Robert his bath and settled in to eat his breakfast, Rachel comes over to deliver an Iced Chai! Taz, Oz and even Taffy go crazy with happiness seeing her. Robert lights up when she comes over, too. We discuss wedding plans for a while then she leaves to meet a friend.

Robert, the dogs and I say our goodbyes and I close the door. Robert says, “What is her name again?”


“That’s what I was going to say.”

He enjoys her visits even if he doesn’t always remember her name.

Robert watches some Family Feud and works on his puzzle book for a bit. I get back to cleaning!

Saturday late afternoon: I take advantage of the break in the rain and take Robert to CVS. He has meds that are ready and I need more furniture polish.

On the way home, I pick up dinner: salad for me; turkey and mac & cheese for Robert.

That should make up for the mini Cadburys I couldn’t resist while at CVS . . .

Saturday night: Robert gets Rocky Road ice cream two nights in a row! We do his usual bedtime routine. I print my “bucket list” spreadsheet of every single Best Picture winner to see which one I should watch tonight.

I text Rach that I really want frozen yogurt. She offers to get it for me but I decide I better not since I remember those mini Cadburys I ate earlier.

I’m hoping I can lose at least one pound at this point.

Back to my spreadsheet. I pick “Ordinary People.”

Good thing I didn’t have FroYo. I have a pit in the bottom of my stomach throughout the entire movie. I realize it is best I watched it now instead of when it came out in 1980 since my family was going through its own dark period at that time and it really would have been too much. 

Sunday morning: I wake up at 5:15 again. Seriously?!

Back to cleaning.

Richard texts me: “I think I may have to change the leg wrap. I keep getting a scent of infection. But it could be the hotel room.”

I bust out laughing but eventually call him to be sure he is okay. I know he is a little panicky about his leg so we talk and decide the smell actually is the hotel room – probably from all the wet, snowy clothes people track in from the North Dakota winters.

I turn on the Sunday news shows while doing laundry and cleaning.

The house is getting a bit too quiet.

Sunday afternoon: Robert sleeps late again so I am making progress on the cleaning! The dogs track in mud after I mop and since it appears the rain won’t stop until July, it’s a futile attempt to actually keep it clean. The floors are at least clean for five minutes – I’ll take it!

I make Robert an omelet for his breakfast/lunch. Usually, he gets oatmeal but thought I’d give him something special today.

Rach offers to pick up anything I need from Target! Wonderful! This saves me from having to take Robert out in the rain. I mobile order drinks from Starbucks for us so she delivers groceries and a mocha (decaf, of course). That’s my girl!

Richard texts me that he is at the Minot, North Dakota “12 store mall” with Christopher and his girlfriend. Richard is sitting while the “kids” check out the stores.

I polish off the mini-Cadbury eggs. It’ll be a miracle if I don’t gain weight this weekend.

Sunday evening: The wind is picking up and I am getting a little concerned about the “atmospheric river” making its way toward us tomorrow. I’m going through an evacuation plan in my head. I have Robert’s meds all ready to put into a bag if needed. Important docs are all in one place which will be easy to grab if we have to leave. It’s a very remote chance but we do live in a flood zone so I need to plan for worst case scenario. It’s my specialty! J

I finish the laundry, feed the dogs and make Robert a sandwich for dinner. I have no inspiration for dinner at all! I am still full from those darn delicious Cadbury eggs so I didn’t eat.

I keep the streak alive and let Robert have ice cream again tonight! He’s not going to know what to do once we get back on the every other day schedule.

For some reason, I am very tired tonight. (Probably from my lack of good nutrition.)

I plan to watch another Best Picture winner but haven’t decided which one yet. Maybe the Godfather!

Richard texts that his leg is “in bee hive pain.” That’s no good.

Monday morning: I wake up at 5:45, probably because I stayed up so late watching The Godfather. I can’t believe I’ve never seen that movie. I am excited to watch Godfather Two!

Robert sleeps in again so I finish all the cleaning. The house is completely clean (well, except for the paw prints from the mud)!

I keep the news on to keep an eye on the approaching storm but also because the house is way too quiet.

Monday afternoon: Rach offers to go to the store for me. It’s raining outside but I am determined to take Robert out anyway. I load him in the car and he doesn’t complain at all about the rain. Probably because I promise him a chocolate shake on the way home. That’ll do it every time! I see Rach and Matt at the grocery store. How fun!

Monday evening: It’s pouring outside so I give Robert soup and salad for dinner and I eat a salad. Finally! Real food!

Monday night: Robert is in bed and I rent Godfather Two. Good grief! It’s three and half hours long?! I make it through an hour and then have to go to sleep.

Tuesday morning: Robert has program today and I have to go to work. Richard is due home later tonight. The dogs will be so lonely today without any of us!

Tuesday afternoon: I leave work early in order to be home for Robert. I make him a salad and pasta for dinner. Matt is kind enough to pick up Richard from the airport.

They get back home and Taz and Oz go crazy! They are excited to see Richard but Taz can’t get enough of Matt. Richard excitedly tells us about his trip and I know this is something both he and Christopher will always remember.

The house is full and noisy and I love it.

As for those five pounds. . . well, let’s just say I’ll try again another time.

Monday, January 16, 2017

Back to Excellent!

Actually, if you ask Robert he never left excellent. Richard and I, on the other hand, saw him go from his usual excellent self to sounding very croupy and congested to running a fever, wheezing, coughing up yukky stuff and barely able to stand.

It all happened very quickly!

Robert had a bad bout of pneumonia in the spring of 2015. We kept him home and treated him with the help (over the phone) of his wonderful pulmonary nurse, Lana. Robert was pretty darn healthy until last October when he had similar symptoms but not as severe.

That’s a really good run for him, considering a few years ago he was hospitalized two to three times a year for pneumonia!

He always has a lot of nasal and chest congestion so I am constantly on “pneumonia-watch.” We do everything we can to keep his lungs healthy – kind of like exercises for the lungs! We have an acapella device which he uses several times a day. We have an inhaler, a nebulizer machine and a humidifier. We encourage him to cough (which he hates to do and will turn red holding in a cough) and have him walk around the house with his walker to get some exercise.

Because of his seizures, he is prone to aspiration pneumonia so I also brush his teeth and take him to the dentist for teeth cleanings three or four times a year.

At his last pulmonary appointment, the doctor asked what I do to prevent aspiration pneumonia. I rattled off all of the above but forgot to mention the extra dental care which I think is probably the most substantial contributor to his reduction in pneumonia. (Typical to forget the most important point when talking to a doctor!)

Richard and I are committed to keeping Robert out of the hospital when he gets sick and his pulmonary team agrees completely. His doctor has prescribed antibiotics for him which I keep at home in case he goes downhill fast (which, of course, invariably happens over a weekend). I am reluctant to use these unless it is absolutely clear that he needs them. Robert is already resistant to several antibiotics and he doesn’t need to add any more to that list.

When Robert is sick we work closely with his pulmonary doctor and that fantastic nurse, Lana, mentioned above. Lana keeps in daily contact with me, listens to my concerns and we discuss, as a team, whether it is time to take him to the hospital. Our goal is to keep him out of the hospital but we have to be on the lookout for sepsis and septic shock which can be fatal. (I watch for a very low blood pressure, high pulse rate, extreme sleepiness and shivering.)

We cannot mess around!  

I know it sounds like I am anti-hospital but I will take Robert in to the hospital if needed. It is just that there is such a decline when he is hospitalized and it takes so long to get back to his regular baseline. Actually, I don’t know that he ever really gets back to his baseline. It’s more like he declines and recovers but only up to a new, lower baseline.

That is why we work so hard to keep him out of the hospital when possible.

Last week, Robert got sick very quickly. He sounded “froggy” for a few days and was a little grumpy at Day Program which is out of character for him. Then the fever hit, the deep, horrific cough and high pulse rate. After consulting with Lana, we put him on the antibiotics which have been known to work in the past for him. His pulmonary doctor is fairly new to Robert and after a day of being on the antibiotic that works for him decided he should be switched to another one that has not worked in the past. I agreed to try it but Lana and I discussed it and I told her I would switch him back if he didn’t improve or if he got worse.

This was Friday. By Saturday evening, he was much worse and I thought if he didn’t improve we would be going to the ER in the middle of the night.

I switched him back to his other antibiotic and checked his vitals through the night.

Thankfully, Robert’s fever went down and on Sunday he seemed better than he did on Saturday but he was still pretty sick. It took both Richard and I to stand him up and we used the transport chair to get from his bedroom to the bathroom (about 10 feet). Robert was foggy-headed and couldn’t get his legs to turn or stand straight so we ended up giving him quick baths while he sat in his shower chair.

Pneumonia is not only the worry when he’s this sick but falls are a real concern.

I worked from home Monday and Tuesday so there would be two of us moving him and getting him out of bed, to the toilet and then back in bed. Robert slept a lot!

Robert may get grumpy when the illness is starting to work on him but once it takes hold he is even more polite and sweet than normal. In fact, he woke up with the fever on Friday but Thursday evening he was extremely polite. Really polite. Richard and I looked at each other and said, “This is not good.”

Sure, we like him to be polite but when his politeness goes to another level we know we are in trouble!

When he was sick and lying in bed and I was taking his vitals, Taz was snuggled next to him in bed. Robert started petting Taz’s head and telling him he was such a good boy and then said, “I love you very much, Taz.”

Ha! We have come a long way from Robert being irritated with Taz and shouting “he is touching me!!”  

We had several days of letting Robert sleep, using the oxygen on him, letting him eat in bed (Taz had to leave for that part) and taking vitals every few hours. By Monday, we got him to the table to eat so he was sitting up and moving around a little. We needed to break up all the junk in his chest.

Robert has had sepsis before and has even been in septic shock. I suppose I shouldn’t be surprised that he miraculously survived every time. The man is a walking a miracle, after all. Because of this experience and subsequent research, I know that mental confusion and low urine output are also signs of sepsis. However, I am also aware these are signs of dehydration as well.

By Tuesday, he couldn’t sit up on the toilet and was leaning either far forward or far to the left. We had to literally hold his body up so he wouldn’t fall over. His briefs weren’t nearly as wet as usual and he was confused – not knowing his basic routine or understanding simple directions.

Is it sepsis or is he dehydrated? I called Lana and we talked. Richard and I talked. We were all concerned. Lana talked to the doctor who advised we should take him to the hospital.

I waited it out for a few hours and pushed a lot of fluids in him. He isn’t supposed to use straws because of his swallow disorder but he could barely hold a glass so we used a straw (you just have to do what you have to do sometimes!).

Thankfully, he improved as the day progressed. He continued to improve through the week but was pretty weak and still a fall risk. I was able to go to work on Wednesday and Richard stayed home with Robert. Richard has his own leg infection he’s dealing with so had a couple of appointments he couldn’t miss. I am very grateful we moved closer to work because it allowed me to drive back and forth the rest of the week.

I actually have a lot to be grateful for!

First and foremost: Richard. If Richard and I were not both able to care for Robert, he would have had to go to the hospital – no question. There is no way either one of us – alone – could physically assist a 220 lb. guy with standing or transferring to his bed.

Next up: Lana, the pulmonary nurse and case manager extraordinaire! Without her care for Robert and confidence in me, as the caregiver, Robert would have been in the hospital.

Honorable mentions: Our daughter, Rachel, who is a wonderful emotional support and knows how to give us some comic relief! My best friend, Joelle, who runs interference at work when I am not in the office all while handling her own challenging job. Richard’s mom who calls to check on Robert and who fervently prays for him to get better. Our fellow caregiving friends who check in on us daily to see how we are and how Robert is doing. In fact, one even sent us a Prayer Angel a while back which we have been using for both Robert and Richard!

I am also grateful for an employer who allows me the flexibility to work from home when it is absolutely necessary. Although, I did realize that I would much rather work from home all the time! I mean, it’s very hard to compete with a home office that comes with Puppy hanging out with me and sleeping on the office couch.

Lastly, I am grateful for Robert. He is a good patient, even when I am frustrated he can’t respond to my directions. He keeps his joking attitude even when my brow is furrowed with worry and I can’t laugh along with him.

There will come a time when he will have to go the hospital and I will be okay with that. I absolutely know that Richard and I have done our very best. We definitely gave this round our all and if this bout of pneumonia is not completely gone then he will have to go to the hospital.

For now, though, after 10 days of Robert being sick I am prepared to say he is pretty much back to normal – okay, let’s say excellent. Robert says he is doing “excellently great” and the plan is to resume our usual schedule in the morning and send him back to Day Program.

Fingers (and toes) crossed!

Tuesday, December 27, 2016

Robert’s Excellent Christmas Spirit

Richard and I were talking recently about Robert and marveling at how he has lived with us for almost four years! When I first started caring for Robert it involved intervening when he had a serious infection and overseeing his care in the hospital, a Skilled Nursing Facility and an Assisted Living Facility.

Carol, Robert and Trish at the Kreis Christmas
At the risk of repeating myself, it never occurred to me that Robert would eventually live with us! I always thought that was either not needed or impossible for me to manage.

As it has turned out, it was both needed and possible.

While Richard and I marveled at this turn of events we also noted that Robert no longer has his angry outbursts either at home or at program. At the various facilities, Robert would act out by yelling or flailing his arm to stop someone from either helping or bothering him. There were the “recliner” episodes at his previous Day Program because there were a lot of people wanting to sit in the most comfortable recliner and, well, only one comfortable recliner.

Neither one of us could remember the last time Robert had an outburst. He has settled into a comfortable routine at home, enjoying his own bedroom and bathroom and not having to fend off other clients taking his stuff. Robert enjoys meals with family and can count on Rocky Road ice cream at least every other night. (Hey, I have to set some limits!)

Robert's Christmas card to Richard
Robert plays ball with the dogs, jokes with Richard and politely asks me how my day was immediately upon my return from work. It’s been months since paramedics have been called to our house and a couple of years since an overnight hospitalization.

I don’t want to boast but it seems living with us has been good for both his mental and physical well-being!

Having Robert live with us has been good for us as well. Richard feels caring for Robert gives him a purpose. Due to Richard’s back pain (and now vascular issues in his legs) he cannot have a “regular” job. However, Richard manages the household and cares for Robert when he gets home from program. They’ve developed a fond, brotherly relationship that is evident in their banter and which brings joy to my heart (when they are not driving me nuts with their silly jokes and teasing.)

This Christmas season has highlighted Robert’s fantastic attitude for me even more than usual and it delights me to share him with others. While caring for him is expensive, stressful and exhausting it is an experience that has enriched my life more than I could have imagined. Not just because of how his attitude directly impacts me and Richard but because I have seen the kids move from seeing Uncle Robert a few times a year when they were growing up and only having a vague understanding of his disability to developing a deeper understanding of what caregiving and being disabled is all about.

Robert's version of picking a Christmas tree
Heck, I’ve seen that in myself!

Robert loves to be involved in all the extended family activities and is content as long as there is food involved. Robert is game to getting a Christmas tree and going to family parties but his word search book is always close at hand.

Robert and his friends at Day Program also participate in an event each year to help raise money for the Make a Wish foundation. All they have to do is write a letter to Santa and then the letters are dropped into a special mailbox and Macy’s makes a donation to the Make a Wish program. The letters range from “Dear Santa, I would like a million dollars” to “Dear Santa, I would like a gift.”

Robert's letter to Santa
Robert and his friends may be disabled but they are kind enough to participate in an activity to help someone else. If that isn’t the spirit of Christmas, I don’t know what is.

Christmas may be over but what I have realized is that Robert has Christmas spirit all year long. I am grateful I didn’t listen to that voice in my head that said caring for Robert would be impossible. It is not only possible but it turns out that it was actually a gift.

Wishing everyone a year of gifts in unexpected places and lots of “excellent” Christmas spirit!

Robert enjoying his Christmas Day gifts and family