The Caregiving Snowball

It’s hard to tell when you’re in what I call the caregiving snowball.

Here’s how it works: you have survived the beginning of caregiving where everything is whirlwind: doctors’ appointments, diagnoses, documents to create, decisions to make but then things get pretty steady. Things are certainly not easy but steady enough to establish routines with only occasional hospitalizations or emergencies.  The length of this period is as varied as there are caregiving situations.  Some skip it altogether and go straight to the snowball. 

The crew happy to be home

The snowball is when things get crazy. 

There are possibly several falls, repeated illnesses and multiple hospitalizations or stays in a Skilled Nursing Facility. The rebounding isn’t quite like it used to be. It takes longer to recover from pneumonia or a fall.

The days of routine look pretty good right about now. 

Sometimes I wonder if we are in the snowball period with both Robert and Carol. I think it’s really impossible to tell when a caregiver is actually in it but, boy, it sure feels like it sometimes.

We have to celebrate with cake!

Robert has gone from getting sick with bronchitis or pneumonia one or two times a year to four to six times a year. It is getting more difficult to treat him at home when he becomes ill because his mobility goes out the window and he goes downhill so quickly. Not to mention the oral antibiotics that his doctors prescribe are losing their efficacy. He requires IV antibiotics when he’s this sick and that’s something we can’t do at home.

Recovery takes much, much longer. He may end up in the hospital for a week but then needs a few weeks in a SNF to get his strength back. Even when he’s back home, there is a noticeable decline.

The snowball to me means longer recovery times and a steady, permanent decline in Robert’s overall health and mobility.

With Carol, she may have more frequent falls and hospitalizations but she seems to bounce back without an additional decline. At least, if she has a decline in mobility it’s more minor than I have witnessed in Robert.

Freedom!

Both Robert and Carol are back home and the caregiving snowball has been on my mind. They both got home on a Thursday and by Friday, Robert couldn’t walk, had a very tight cough and was exhibiting his usual symptoms of getting sick. His vitals were good but I was concerned, especially since he had choked/coughed a lot during the welcome home dinner!

Thankfully, Robert had a scheduled appointment with his pulmonologist who did an ultrasound to see if there was any fluid lurking in his lungs and agreed with me that antibiotics would help stave off any possibility of an infection. A couple of days of rest and the antibiotics as well as his more aggressive nebulizer treatment (three times a day instead of the usual two) seems to be working. Robert is moving around a bit better but we’re not pushing it. He is using the wheelchair more than usual but we are also letting him walk with the walker for short distances so he can build up his strength.

Sleeping but happy

Carol is sleeping quite a bit but Richard is making sure she is taking her medication and drinking water as well as eating a little something. She eats then goes back to sleep. Sometimes this is an indication she has something brewing but we are chalking it up to not getting good sleep in the facility. (Because we are going to think positive!)

So I don’t know if we are in the caregiving snowball yet or not. I’m happy to have Robert and Carol home, just where they belong and whether we are or not in the snowball really doesn’t matter since Richard and I will move along this journey where it leads us.

I am grateful to have Richard beside me during this crazy caregiving experience and, if we are in the snowball, well – we both love a good snowball fight so I guess things will work out just fine.

My co-pilot

Caregivers: We Can Do Hard Things (but Don’t Have to All the Time)

I fell in love with this sign: “I CAN DO HARD THINGS.” Yes! I can do hard things! I am proud of myself for doing hard things!

I found it while organizing an office move. This is one of my specialties – I’ve worked at just a few law firms but have been in charge of at least half a dozen moves. This last big move involved more than 60 people, half of whom are timekeepers – meaning their time is what pays our bills. Getting them to take time out of their already busy and stressful days to prepare for an office move requires a little bit of begging, cheerleading, humor, my best impression of a drill sergeant and a whole lot of rolling up my sleeves to help.

In other words, it is hard work. But I CAN DO HARD THINGS!

Other Brother’s words of wisdom ring in my ears when I am doing these hard things: work smarter, not harder. (To his credit, Other Brother works both smart and hard!) I understand the meaning behind these words: be efficient! Between checklists, spreadsheets, team building and timelines, the moves are stressful but I have earned the trust of partners and staff alike to get us moved and up and running on schedule. So, yeah, I am working smarter but it is still HARD.

Caregiving is like that too.

Caregivers CAN DO HARD THINGS! I work hard every single day at keeping Robert well. I work hard to make sure Robert has the best treatment plan for his epilepsy. I work hard to help him keep as mobile as possible for as long as possible. I make hard decisions about Robert’s health care multiple times a day. When Robert was hospitalized for the gazillionth time for aspiration pneumonia I refused a doctor’s recommendation of a feeding tube for Robert.

Why? Because one of Robert’s greatest joys in life is eating! Even if he can continue to eat a little something with a feeding tube, I just cannot take one of his joys away from him. Hearing the doctor – a doctor who had never met Robert before in his life – explain to me the dire consequences of me declining the feeding tube was HARD. I could tell he thought I was supposed to feel a little guilty about this decision. Maybe even that I should realize what he was saying was “for the best.”

Standing up to the doctor and repeating my refusal of the feeding tube was even harder than the actual decision but I had no problem doing it. I stood up a little straighter, looked him in the eye and told him I knew it was the right choice for Robert. (I had other doctors come in a little later to tell me they supported my decision and, of course, Robert’s regular team of doctors agreed with my decision.) Robert will continue to aspirate and get pneumonia but he can aspirate on saliva during a seizure so a feeding tube will not completely eliminate the risk.  

So, yes, caregivers CAN DO HARD THINGS and we do them every damn day!

This is why I have a love/hate relationship with this sign that alternates between hanging in my closet and sitting on a shelf underneath some scarves.

I can do hard things. I can work smarter. Sometimes, though, I (and probably millions of other caregivers like me) just want to take a little break. Let’s ease up on the hard work that we know needs to be done and that we know we can do. We need to be gentle with ourselves, pat ourselves on the back for a job well done, for working our butts off to keep our loved one alive and happy and joyful for as long as we possibly can.

And we need to work as fiercely hard for ourselves as we do for others. For me, that means taking 20 minutes to walk. That means ordering take-out instead of making dinner. That means getting a pedicure with my daughter or taking a respite with my husband or, sometimes even, just not worrying about my to-do list.

I CAN DO HARD THINGS but I don’t have to do them all the time.

And neither do you.

Take your break. Be gentle with yourself. Do not let the guilt creep in; instead, feel your own joy. Set aside that to-do list. Breathe.

Then go back to doing those hard things that are inevitable but do them with renewed energy and peace.

Confessions of a Caregiver: Accepting Help is as Tough as Finding It

Certainly I don’t need help.

Robert goes to a Day Program while I work so that’s already more help than some of the other 40 million caregivers get. I feel fortunate I have this great resource.

Almost 11 years ago when I started caring for Robert he could walk unassisted and get dressed by himself. He needed help with medications, time management, toileting, and making safe and healthy decisions (like not wearing urine soaked clothes that had dried overnight).  

The decline has been slow and steady but brutal. It is hard to see a steep decline when living it day to day but sometimes it hits me just how significant of a decline it has been.

Robert and Aunt Evelyn

After each bout of pneumonia or the onset of Parkinsonism or the relentless, ongoing seizure clusters, Richard and I picked up the slack with the tasks Robert can no longer manage. Dressing has gone from picking out his clothes and prompting him to pull up his socks to completely dressing him. Walking unassisted transitioned to using a wheelchair just for long distances to using it most of the time. Robert may use the walker at home but he can’t do so unassisted. We walk next to him so he doesn’t fall but he still does fall. Falling (or almost falling) means catching him or picking him up. 

All 210 pounds of him.

Robert has developed other health issues which require additional maintenance and medications to keep him as healthy as possible. I now brush his teeth to reduce the bacteria in his mouth so there’s less of a chance of pneumonia when he aspirates. We put the nebulizer mask on him twice a day to keep his lungs open and healthy. His medications have changed and increased so much that, for fun, I’d like to walk into a pharmaceutical school and take their final exam to see how I do. I may not get an “A” but I think I’d pass.

I have a strange idea of fun.

Incontinence has moved from urinary incontinence to occasional bowel incontinence. Robert’s memory is so inconsistent that sometimes I have to remind him which way to turn out of the bathroom to get to his bedroom or explain that it’s breakfast time and not time for a scoop of Rocky Road ice cream.

Still, I didn’t think we needed help. After all, there were two of us taking care of Robert. The bulk of the physical work fell to me since Richard has his own health issues but I was managing it okay – until I wasn’t.

My stroke last year was a wake-up call and I was determined to make changes. I immediately started walking regularly, taking medications to prevent another stroke and have greatly reduced my carb intake. For good measure, I feel even more guilt than usual when I cave to those sugary cravings. I do better about managing my stress and have no trouble saying “no” to doing too much for too many on any given day.

My longer term goals related to caregiving were to hire a housekeeper, take a respite and hire in-home care for Robert.

These goals took a little bit more work but I hired housekeepers, fired them after not showing or calling and promptly hired another company. I absolutely love this extra help and am grateful to be able to afford such a luxury. Richard and I took a respite within a few months of my stroke.

Two goals down; one to go.

I started my search for in-home care by posting an ad on NextDoor and Care.com, telling friends and family I was looking and calling several agencies. The referrals from friends were already working elsewhere, replies to the ads were minimal at best and the agencies either didn’t show up or were too expensive. (One rep came in and declined my offer to talk with Robert. She wanted to get straight to the services, their cost and even pulled out a contract. Um, thanks but no.) 

The other problem with agencies?  They only do medication “reminders.”  I’m sorry, but no amount of reminding is going to get Robert to take the correct medication. He needs to be handed a cup with two pills at a time and told to take the meds.

Even while looking, I was having trouble nailing down exactly what someone would do but decided a few hours a couple of days a week would be helpful.

One of the hardest parts of providing care to Robert is the constant interruptions and needs. He probably needs something every ten minutes. If it isn’t him asking for something, I am restocking supplies and medications, doing laundry, ordering more supplies and calling medical professionals and health agencies.

It would be nice to have a two hour break a few days a week but because it was proving to be so difficult to find care, my head started the excuses reel:

How can someone help me for just a few hours a week?  Will that really be helpful?  I mean, I can change him myself and let him watch Family Feud and have a few minutes to restock or do laundry or make calls.

Plus, what about our dog?  We have an older dog who doesn’t mind strangers but our “puppy” (who is actually pushing seven years old) takes a while to welcome people into his tribe. I wasn’t sure he would get used to someone.

Puppy and Oz

Other Brother asked me how my search was going and how he could help. I appreciated his offer to help pay for services but I refused to pay an exorbitant amount for a small amount of in home care – no matter whose money I was spending. Especially when Robert has the benefit of IHSS hours (which means we can hire a care provider using these hours and the state pays the person instead of us paying out of pocket).

I suppose that is one more excuse I was coming up with not to hire help but I really tried to find in-home care. It just was not working out – excuses or no excuses.

It became more difficult to find help than any benefit that I could gain even if I did find it. I told myself that all the other changes I had made after my stroke were enough. We were managing just fine, thank you very much.

Over the next several months, the decline in Robert’s mobility and health continued. There are more frequent bouts of pneumonia and his mobility takes a worse hit each time. The last bout of pneumonia really knocked him for a loop and he was in a Skilled Nursing Facility for a few weeks to get intensive physical therapy.

Not showering Robert. Not dressing him. Not sorting his medications. Not doing five loads of laundry a day (no joke). Not helping him stand or keeping him upright while he was walking.

This was nice. I really, really liked having a break from the physical part of caring for Robert.

We saw his mobility neurologist about a week after Robert returned home and she saw just how much trouble he was having even just adjusting himself in the wheelchair.

She looked at me and said, “You need to get in-home help. This is too much.”

I love this doctor. She cares for Robert but also cares about the impact caregiving has on me. She is smart and helpful and kind.

And she validated that what I am doing is a lot.

For some reason, I couldn’t do that for myself so let the reasons for not hiring in-home care pile up.

She told me she hired caregivers for her mom who has dementia and lives in an assisted living facility. She reminded me about Care.com. She gave me a goal of finding a caregiver. Interview caregivers at Starbucks, she said. Find someone you like then bring them into your home.

She gave me the steps to find someone. Her words were what I needed to hear.

I told my best friend. I told Richard. I told Rachel. I told Other Brother. Rachel had been trying to convince me to get help on our nightly walks. My best friend told me she had been very close to calling Rachel and staging an intervention so I would get some help.

They all agreed we needed help. They knew all along. It just took me some time to see the benefit was worth the effort.

I renewed my efforts to find help. I placed another ad on Care.com and got several applicants this time. I took time off work and set up interviews at Starbucks. Some showed up, some were terrible, one was most likely impaired.

None were right.

I continued screening applicants. I did a phone interview and fell in love with someone but she had transportation issues. Then scheduling issues. It didn’t look like this would work out.

Then, a miracle happened.

My son-in-law saw a post on NextDoor from a woman who only wanted to work ten hours a week, was IHSS certified and lived a couple of miles away. He texted me her info and I immediately called her.

She was everything I had thought would be a perfect candidate: IHSS certified and she could work in the afternoons when Robert gets home from Day Program.

She even liked dogs.

Crazy Puppy

She came over and met Robert and Puppy. She loved Robert and didn’t run screaming from the barking Puppy.

I hired her on the spot.

Puppy barked at her the first day and Evelyn took it in stride. She gave him treats and Richard took him in the bedroom after a while so she could work with Robert. I showed Evelyn the routine for after Day Program and before we knew it, two hours had gone by.

Still, after the first day, I wasn’t sure if this was going to work. Puppy and Richard can’t stay in the bedroom for hours every day. Evelyn wanted someone who was mobile and Robert is, well, mostly mobile. I worried about that “mostly” part.

And Puppy.

I felt better after Day Two. Evelyn told me she wanted to do everything. She said I didn’t need to help her. She sweetly called me a mama bear (I can’t argue with her there). I went in the office and worked on a writing project. It was two hours of mostly uninterrupted time and it was glorious.

Puppy was even warming up to her.

By Day Three, we were calling her Auntie Evelyn and Puppy was comfortable enough to hang around her without barking.

Day Four Richard gave her a house key.

On Day Five, Richard had his first post-surgical appointment at the time Robert was due home and I wanted to attend with him. We weren’t sure if Evelyn and Puppy were ready to be alone together but Evelyn said she was ready. Puppy was ready too – he ran circles around her when she came in and then brought her a toy!

Mama Bear leaves them alone now; Auntie Evelyn and Robert watch Family Feud after she gets him into his pajamas and while she folds laundry. They laugh like old friends and are plotting how they can get on Family Feud together.

She is everything I wanted in a caregiver. It took a year but the effort to find help was worth it.

2018: Goodbye Awful, Hello Gratitude

I fully intended to write about the awfulness that was 2018.  For most of the year, I have been saying it has ranked high on the list of “worst years ever.”

After all, 2018 brought us Carol passing out in our dining room and smacking her head – lying unconscious for long enough that I was convinced she had died. 

Robert was hospitalized three times due to a variety of reasons: the flu (even after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory syncytial virus), and a week-long video EEG (which caused yet another bout of pneumonia).  He had his usual episodes of aspiration pneumonia which didn’t get severe enough to get him to the hospital but which knocks him out for at least a week.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. 

I almost forgot!  2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

I was the most overwhelmed I have been in my ten years of caring for Robert last January when both he and Carol were in the hospital at the same time and Richard was still recovering from his first skin graft.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

So, yes, 2018 was just awful but as I was looking through my calendar and photos from the year, I realized it was something else: wonderful!  I was so focused on how stressful it was that I had minimized the beauty of it. 

While Carol and Robert were in the hospital early in the year, our son-in-law spent hours converting our bathroom tub into a walk-in shower. It is not only so much easier for both of them to get in and out of but it is absolutely gorgeous!   

My best friend married the love of her life and one of my other dear friends drove me the five and half hours to the beautiful ocean-side wedding so I could be there for Joelle!  Sarah and I made the trip in one day so we only missed one day of work but we had a blast surprising Joelle and she got us there and back safe and sound (even with me cringing in the passenger seat because of the ridiculous drop-offs on some of the “roads”).  Bonus: I got to see the ocean!!

Richard and I took a trip to Alaska – just the two of us!  It was so relaxing and so much fun to spend time together without having to worry about hospitals, seizures, medications or caregiving. We saw whales and seals and more bald eagles than I thought I would ever see in my life!  The trip fueled my soul and I could feel the stress washing away. 

We had a second wedding later in the year when my step-daughter was also married and which brought an opportunity for family (including the siblings) to be together.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  It feels as if they are always by my side (which they are) but we rarely are able to see each other in person. Hugging them was just what I needed in 2018. 

2018 also led me to a writer’s conference which introduced me to people I probably would have never met if I hadn’t taken the step to attend.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  It was out of my comfort zone but it is possible this will lead to more exposure for our books and some wonderful opportunities (fingers crossed)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

When my mom became sick almost 20 years ago and we knew she only had few months to live, our motto became “there is no time like the present.”  We visited the ocean, we welcomed visitors we hadn’t seen in years, we shopped; we shared recipes, watched movies and played games. If 2018 taught me anything, it was to remember that motto and to live like there is no time like the present – whether we are dying or not. I did not need a terminal illness to remember that lesson (although, apparently, I did need a somewhat dramatic kick in the pants.)

Most importantly, throughout the year, I had the incredible love and support of my family and friends.  I know many caregivers are not as lucky as I am and, unfortunately, have family who abandon them.  I am fortunate – no, I am blessed (and I know that word is overused but I have to use it) – to have a daughter who spends time with me and who makes me laugh; a husband who pushes himself through pain to help alleviate my caregiving load and loves me so much; friends who listen to me rant at any time; a son-in-law who, regardless of how busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who make me laugh and help whenever we need it and a sibling who not only appreciates the care I give to our brother but who is extraordinarily generous (beyond – I mean, he gifted me with a new car for my birthday! Who does that?!?!).  He is not only extremely generous but also emotionally supportive (and even came through in a pinch when I needed someone to stay with Robert during wedding #2).  I am happy to report that he and Taz are now pretty much best friends. 

My year may have been overwhelming and over-the-top stressful but through it all there were always smiles (sometimes through the tears or after them).  2018 ended with gratitude and love and the realization that we came out alive but also with a hope for a quieter 2019.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us!