Wednesday, April 22, 2020

Tips to Help Caregivers Manage during this Pandemic

The COVID-19 pandemic put much of our world on pause. Millions have lost their jobs or have seen a decrease in their work hours. Small businesses are going out of business or, at the very least, struggling to stay afloat. In the US alone, hundreds of thousands have been or are sick and tens of thousands of people have died. Families are caring for sick loved ones and grieving those they have lost.

Life is very, very different.

Life is different for caregivers, too. More than 40 million people in the US provide care for a loved one or friend and a great many of those are also employed. With the stay-at-home orders, loss of income, difficulty getting supplies, and the lock down of many hospitals and care facilities, the stress on caregivers and those they care for is at an all-time high.

Trish, Robert and Richard
What can caregivers do to cope with these situations and reduce their stress? These are a few suggestions to help you get through this extraordinary crisis.

Stay-at-home Orders. The Stay-at-Home orders are critical to keep people safe. Social distancing works. However, caregivers who live with their loved one know it is impossible to keep a distance while also caring for our loved one.

The best we can do is wash our hands frequently, wear gloves and a mask when possible, and keep commonly used surfaces disinfected. Many of us are spending even more time on caregiving duties because the outside caregiver can no longer come over or the day program has closed. This puts an even greater strain on us and adds to the stress of this already stressful time.
            Self-Care Tip. Caregivers cannot leave their home to get a break but we can find ways to take a break and reduce our stress. Spending 24/7 with our loved one means we are going to get on each other’s nerves (it’s okay; that’s normal). Find ways for both of you to have your own time and space. Can you go out in the backyard while your loved one is eating? Can your loved one do a puzzle book while you read in the other room? Even spending time together doing an activity like watching a movie can reduce your stress and keep that connection with your loved one.
Loss of Income. Losing your job or having your hours cut is devastating to someone on a strict budget. A dramatic loss in income creates worry and stress not only for you but your loved one as well.

While this is a terribly depressing time it is also time for action. Apply for unemployment as soon as possible. The CARES Act extends unemployment benefits so even if you didn’t qualify before you might qualify now. If possible, reach out to other family members for financial help. Contact your local food bank or Meals on Wheels for help with food. Reach out to creditors and landlords or mortgage companies to see if they can defer payments for a few months.

            Self-Care Tip. There is nothing more stressful than not knowing how you will pay your bills or feed yourself and those you care for. Taking action will help get you back on your feet but it is also critical for you to do something to reduce that overwhelming stress in the moment.

The best way to do that is to breathe. (Bear with me.) Close your eyes. Take a deep breath. Repeat. You need to reduce your stress if you are going to be able to take that action described above. You need your full energy right now and that means taking care of yourself and allowing yourself a few moments to breathe and tell yourself you will get through this. You will. You will get through this.

Where are the supplies?! The lack of everyday supplies is maddening. Not to mention caregivers needed PPEs before anyone knew what a PPE was! (We need toilet paper, too, and it makes zero sense why there is a shortage of that right now.) How do we get the gloves we need or masks when all the stores are sold out? (And who the heck has all the toilet paper?) Luckily, caregivers are both persistent and creative. A few tips to find those necessary supplies:

·         Call your health care professional. A home health nurse, your doctor, a case worker or pharmacist might be able to at least steer you in the right direction if not order supplies for you. We have personally had luck with a home health nurse getting us gloves and alcohol prep pads. We also had luck with ordering gloves through one of our incontinence supply vendors.
·         Create online orders in the middle of the night. A friend gave me this tip and said product availability and available delivery times were better in the middle of the night.
·         Take advantage of senior hours. If possible, take advantage of the early hours some stores are setting aside for seniors or those with serious health conditions. I do not know if being a caregiver of someone will get you in early but it can’t hurt to try. Supplies seem to be more plentiful during these hours – even for paper products! 
·         Ask friends and neighbors. If there is a positive in this pandemic it is the connection people are creating with others. Neighbors are helping neighbors and friends and family are finding creative ways to help one another. Ask these people (even if you don’t know them!) where to find something you need.
·         Check non-traditional suppliers. Some of the essential businesses are now selling things like toilet paper and paper towels. Check stores like Home Depot or Lowes for disinfectant wipes and toilet paper. There are even restaurants selling not only their to-go food but also rolls of toilet paper!
·         Make your own mask/face covering. Homemade masks and face coverings are springing up. There are a few sites to help you make your own but this one has directions for both a no-sew version and one that requires sewing.

Self-Care Tip. Connect with others! Whether by phone, FaceTime, email, social media or texting, it is important to stay connected with others. Friends, family and strangers alike can not only help you find needed supplies but can also lend support and words of encouragement while you care for your loved one at home.

Lockdown Orders. Not being able to visit our loved one in the hospital or a care facility is not only tough to go through but frightening for caregivers. Just the possibility of having to send our loved ones to a hospital is even more stressful than usual because of the lockdown orders. There is no simple solution for this situation.

As caregivers, we are pros at advocating for our loved ones, keeping in constant communication with the hospital or the care facility caring for our loved one. We are used to being right by their side during a hospitalization and are a frequent visitor when they are in a care facility. Right now, that can be dangerous for us and for our loved one.

The best we can do at this time is get and give information over the phone. This is not ideal since hospitals and care facilities are busier than ever so enlist an advocate within the healthcare system, if possible. Do you have online access to the medical records of your loved one? You can check on blood work and other test results once they are posted online. Enlist your GP to see if they can get additional information from the hospital. Implore a contact at the care facility to keep you posted on your loved one.

If possible, keep in contact with your loved one through phone or text. However, this is not always reliable since our loved one may not be well enough to communicate with us or they may have dementia or otherwise unable to use a phone. Ask the healthcare professionals providing care for other ways you can best be kept apprised of your loved one’s condition.

            Self-Care Tip. This is very stressful situation to go through and you will need to care for yourself so that you do not end up with your own health issues. Make sure you are eating properly, drinking enough water and getting enough sleep. This may seem like obvious advice but every caregiver knows that during stressful times we forget to do all of these things. You have to stay well to prepare for your loved one’s return home so please take care of yourself.

Caregiving is more challenging than ever right now but we will get through this.

Stay safe and stay well. Take care.


Trish Hughes Kreis is co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers book series and works as a full-time Legal Administrator. She is also a freelance writer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for several years and they do their best to keep him in a never-ending supply of Rocky Road ice cream, happy, healthy, and, of course, excellent. 

Sunday, October 27, 2019

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.

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

Sunday, September 29, 2019

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.

Sunday, August 18, 2019

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, 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 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 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.