Looking for Answers

Something is going on with Robert that I haven’t yet figured out. 

During the eleven years Richard and I have cared for Robert, there has been a dramatic decline in his functionality and mobility. It isn’t a straight downward decline but more like going down a staircase. Robert is stable for a while, then gets sick and loses some functionality and goes down to another step. He stays at that step for a while then gets sick again and we repeat the process. 

In the last eleven years we have gone down a lot of steps. 

Keeping Robert at baseline means doing my best to prevent him from getting sick. Seems easy enough but he gets sick not just because he picks up germs from other people but because he has a swallow disorder and easily aspirates which turns into pneumonia (which leads to another step down the staircase). 

Robert’s bouts of decreased mobility are usually explained by three things: the flu, aspiration pneumonia or as an indicator of seizures (the prodromal phase).  

He has very specific symptoms when he is getting sick. Increased pulse rate, decreased blood pressure, lots of confusion and weakness making it difficult to stand, walk or even transfer. If he has the flu or pneumonia he also runs a fever. 

When his seizures are coming he has a high pulse rate and he’s confused. 

Once we figure out what is causing these symptoms we can move on to treatment (rescue meds for seizures and usually the hospital for aspiration pneumonia or the flu since that usually turns into pneumonia). 

I love puzzles but this can get complicated. 

Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick. 

However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness. 

Since March, Robert has left the house only for physical therapy and for his flu shot so I knew it was highly unlikely he picked up COVID-19 or the flu. 

He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia. 

He had seizures one day during all this but not since. 

There is something wrong but it’s not his usual three issues. 

His GP moved back east and Robert was not set up with a new doctor yet so I reached out to his movement neurologist. She keeps an eye on his parkinsonism and knows how fragile he is. She speculated that he may have a urinary tract infection (UTI). This would explain the confusion and the mobility issues! She’s a genius! Robert would be good as new in no time! 

Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test. 

That came back normal. 

Ugh! I was really hoping for a UTI! (I know that probably sounds ludicrous to anyone other than a caregiver but I just wanted an explanation.)  The neurologist said it is possible “this represents progression in his underlying neurodegenerative process.”

No. That’s not what I want to hear. I want to find a problem that we can fix. 

I was so frustrated that we didn’t have any answers that I asked his neurologist to run bloodwork to see if he had an indication of an infection and also asked for another urinalysis. Maybe if I got more urine for the test it would be more accurate. She obliged. 

In the meantime, I set Robert up with a new GP. 

I took him in for the bloodwork. Later that day, I was able to get a full cup of urine! I was never so happy to see so much pee! I rushed to the lab and got there fifteen minutes before they closed. PLEASE let this give us the answers we need! 

The bloodwork came back mostly normal. The urinalysis took longer but came back Friday night. There were quite a few abnormal readings but the neurologist said it wasn’t a UTI and handed me over to the new GP to follow up. 

In the meantime, Richard and I have had some very difficult days trying to get him up and around (Robert is a big guy). Richard and I struggle to move Robert around. It takes both of us to get him out of bed and into a wheelchair then over to the bathroom. I’ve given up on dressing him in anything other than his pjs. (Luckily, we’re in the middle of a pandemic and wearing pjs all day every day actually isn’t all that unusual now.) 

Since we can’t risk hurting ourselves we decided to try new routines and found one that is working! We are changing Robert’s brief in the morning while he’s in bed. We give him breakfast and have him drink water and juice and watch television to wake up a little bit before trying to get out of bed. That is helping! He is definitely stronger and more mobile after eating and drinking. Plus, he has a newfound love of Star Trek and who doesn’t love breakfast in bed?! 

It was such a relief to find something that makes even a little bit of a difference. Just making this one change helps us so we are not hurting ourselves and it helps Robert because not being able to move is getting frustrating for him. 

We still have to find the underlying issue and my hope is that it is something that can be fixed. I worry about kidney damage from all of the medications he is on but hope it’s something simple like dehydration, which we can fix. 

The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase. 

Caregiving Decisions: All Day, Every Day

Decision fatigue can creep up on caregivers. I know when I can’t even decide what to make for dinner that my decision making ability is on overload. (I usually end up choosing breakfast for dinner at that point – easy and comforting!)

The pandemic has added even more decisions for caregivers to make.

Shortly before the stay-at-home order in California, I made the decision to keep Robert home from Day Program. They hadn’t yet closed but he is prone to pneumonia and it is virtually impossible to social distance at Day Program.

I decided it was safest for Robert to keep him home.

There’s no set reopening date for the Day Program but, at this point, I can’t send Robert back. Not any time soon anyway. He loves being with friends but I can’t jeopardize his already precarious health. I am not worried about his lack of socializing since, with the three of us home, Robert is more engaged in our conversations, enjoying watching shows with Richard while I work from the home office and loves petting Taz while telling him “I love ya a lot, Taz” several times a day. He sleeps in when he needs to and can take as long as he wants to eat a meal (now clocking in at close to three hours – per meal!). As an added bonus, my conversations with him involve phrases other than “hurry up, we’re late!”

For over two months, I decided it was best not only to keep him home from Day Program but also his weekly Physical Therapy appointments. However, I thought he would be fine since he walks more at home than he does being in a wheelchair all day at Day Program.

After about two weeks at home, though, he was having more trouble with his balance and with his legs “working.” Things got worse as the weeks went by. It took both Richard and I to get him out of the recliner to stand. It took both of us to help him walk down the hallway, all the while telling him how to walk and sometimes patting his leg to “cue” him. We had to literally tell him how to move.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Robert’s brain was having trouble communicating with his legs. I worried that it was because I didn’t take him to PT; I worried that it was permanent; I worried I would no longer be able to care for him like this.

I talked to his movement specialist and she thought it was a progression of his Parkinsonism. She felt going back to PT might help.

I wasn’t convinced it would be safe to take him so mulled it over a while longer.

Soon thereafter, Robert fell three times within a week. The third time landed him in the ER to get checked out (nothing broken; no concussion).

I called PT to see what their protocols were so I could weigh the risks. They provide everyone with masks, limit the number of people in the waiting room and gym area and thoroughly sanitize after each patient session.

I decided it was time to get him back to PT.

He was happy to return to “work out” and I was happy to learn that he still had muscle strength so I didn’t need to feel guilty about not taking him to PT.

(Guilt is so often an unwelcome companion of decision-making.)

The therapist mentioned that he should be sitting up instead of in a slouched position which makes me think the recliner might have had something to do with exacerbating his decline. I also decided to slightly reduce one of his anti-seizure meds that I know affects his mobility. It had been increased to the current dose in January but maybe a slight reduction would give him the “boost” his brain needed. The risk is that we will see an uptick in his seizures.

I have to decide between mobility and an increase in seizures.

For now, Robert is going to PT weekly again, his problematic medication was slightly reduced and he does not sit in the recliner (thankfully, he hasn’t even asked about it!).

All these decisions have helped. He is still not as mobile as he used to be and I haven’t dared see if he can walk down the hallway yet but he’s better at transferring and standing up.

With all the mobility issues, I decided to let go of his daily showers since he doesn’t have the stamina for that and I let go of the idea of putting him in pants and a shirt every day since I don’t have the stamina for that. Some days he is in pajamas all day and that’s fine for both of us.

These are just a few of the decisions Richard and I grapple with while caring for Robert during the pandemic. There are others, of course. Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go out to eat? (No, that is not a good decision for us right now.) Do we order take-out? (We didn’t for a couple of months but we do occasionally now.) Do I keep Robert’s non-essential medical appointments? (No, it’s only essential appointments for now, of which PT is included.)

Caregivers make decisions every day, all day long. They may not be the decision that other caregivers would make but each caregiver knows what is best for them and their loved one.

What works for someone else may not work for you. Sometimes we might even make a decision and then change our mind! That’s allowed!

And sometimes you can give your brain a break and let someone else decide what is for dinner (let me help you: breakfast for dinner is always a good decision!).

Making Decisions: A Lesson From Dad

The topic of "decisions" has been on my mind lately and I now realize why. 

Dad died ten years ago today and he made his own decisions about treatment for his kidney failure (deciding against it). It was not the decision I would have made for him but, strangely enough, I have to make a similar decision about my puppy, Taz (he's 7 but always my puppy). Taz doesn't have cancer but he has a parathyroid tumor causing hypercalcemia, requiring surgery. Without it, Taz could eventually go in to kidney failure.

Taz is the most temperamental dog (or cat for that matter) that I've ever had. He's picky about his food, doesn't like to be disturbed when he's asleep (but loves to hog the bed), gets grumpy with other dogs when his tummy hurts and absolutely refuses to take medication. Both our vet and dog walker said he is the original social distancer but if you're in his tribe (or eventually lets you in to his tribe), he adores you, cuddles with you and makes you feel like you’re his favorite person in the whole world!

The surgery requires a several day stay in the doggie ICU after surgery and, quite possibly,

medication for life.

I honestly don't know that I want to put my little sensitive guy through all that.

For a long time, I was upset with Dad for choosing not to investigate the cause of his kidney failure (most likely, his cancer had returned) much less treat it. I have come to realize that was the best choice for him.

We all have to make our own decisions.

We haven't decided about Taz yet but I am enjoying each day with him while I mull over the options.

As for Dad, he was an avid individualist full of contradictions which was both maddening and fascinating. He would never listen to reason but he was one of those people who would light up a room with his presence. He adored his kids and grandkids but was married and divorced more than a couple of times. He made and lost a boatload of money and then made it again (and lost it). He didn’t have a lot of friends but people loved to be around him!

He had the bluest eyes I've ever seen and a mischievous grin that he flashed not only throughout his life but at his granddaughter, Rachel, as he was dying.

I used to get so mad at him for a million different things (all absolutely legit, believe me) but I also recognize that I have wonderful memories of him and wouldn’t be the person I am today without his influence (whether it was negative or positive).

Of one thing I am sure and Rachel reminded me of this today: I was his favorite daughter.

(As his only daughter, it was a fun little running joke we had my entire life.)

Make the decisions that are right for you. Enjoy every moment with the people (and animals) in your life and every now and then, flash a mischievous grin – just for the heck of it.

Miss you, Dad. Don't cause too much trouble up there. 

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

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.