When caregiving ends

My journey of being my dad’s caregiver ended at about 10:30 a.m. March 31, 2020.

Though it was expected, I wasn’t ready.

It brought to an end a struggle with Alzheimer’s that officially started in 2013. It happened in the middle of a damn pandemic. It happened during a time of mass confusion and restrictions. It happened when the traditional expressions of sympathy and mourning were in turmoil.

The last 9 months of my dad’s life were a bit of a whirlwind. He was pretty stable and still doing pretty well for the most part until October of last year. We went to his check-up and his doctor noted he had aged quite a bit since she’d seen him in April. She noted his cognitive ability had declined noticeably and she warned me that I would begin seeing a lot of changes in him and it would happen fast. She also warned me that the time would come where I wouldn’t be able to handle it anymore. I knew I wanted him to be at home for as long as possible.

Over the next few months, dad became less independent and less able to do things for himself. He began falling and he needed more assistance daily. He struggled to do more things and my sister and I tried to get him to use his walker more. He, of course, refused and said he didn’t need it.

Valentine’s weekend I watched him go outside to get the newspaper and as he walked up the sidewalk I knew in my heart he was going to fall and I didn’t make it outside before his legs stopped working and he fell, striking his head on the sidewalk, I couldn’t believe how much blood there was. I had to call paramedics for help and it was strongly recommended that he go to the hospital. The paramedics said they could take him but, said he might be more comfortable going in my car over the ambulance. They told me I was doing everything right for him and helped me load him in the car. They stayed at the house and cleaned up the blood from the sidewalk so I wouldn’t come home to that.

When we got to the emergency room the staff was not overly concerned with the cut on his head but were extremely concerned with his heart. After several hours we found out his heart was only functioning at 25% and that was the cause of the falls. I knew we had all the paperwork in place to ensure he would be allowed to pass if it came to that, but all he wanted was to go home. After 4 days in the hospital my sister and I declined to send him to a rehab facility in favor of taking him to the familiarity of home. I had spent every night with him at the hospital helping to calm him down when he woke in an unfamiliar environment. I spoke to his doctor and she agreed the best choice was to take him home, but that he would need hospice care soon.

We hired a caretaker to come in during the mornings so I could go to work, my sister moved in with us and made arrangements to work from the house in the afternoons to allow me to work my afternoon shift since I work a split shift at my school. Then the lockdowns happened. My school furloughed all the preschool teachers and before and after school care staff. We arranged for his caretaker to come in two days a week so I could have some time and so dad could get showers. But, suddenly, I was in a world where even having a pastor come to the house to pray with dad and give him communion seemed to require Herculean hoop-jumping. Suddenly, physical touch was forbidden. As March ended, we needed hospice care.

We called his doctor and said it was time for home hospice and we were set up with a wonderful company called Compasus. They provided so much information to us and on March 26th dad was placed in hospice care. He would tell me about the people coming into his room at night. There were some nights the only way I could get him to sleep was if I stayed with him.

Sunday night (March 30th) when my sister and I tried to get him to bed he was unable to breathe when we laid him down, so we brought him to his chair in the living room. My sister laid on the couch and I slept in another chair. We kept him comfortable through the night. When John, his caretaker, arrived at 8 I told him I was going to try to get a couple hours of sleep while he was there and asked him to just sit with dad. John came to get me at 10:30 and told me he had just passed. He was in hospice care for 4 days.

We contacted the hospice people and they came out and handled everything for us. They took care of notifying the correct people and made it easier for us.. We haven’t been able to have a funeral yet but it can wait until things settle and it’s safe to gather. The hardest thing has been the inability to receive physical comfort from friends due to the pandemic and distancing requirements. Right now the thing I need the most is to be held and allowed to cry. The tears have flowed freely, but, the lack of having anybody to hold me and support me is killing me. I remind myself that when it’s possible I have a line of people ready to offer me the physical support, but it sucks to not be able to get it now.

If there is one thing I can be proud of, I kept my promise to dad that I would keep him home to the end. When his doctor called to express her condolences she told me I could be proud of myself for giving him the best possible care and loving him to the end. She said he did as well as he did for as long as he did because of me and my sister and the love we gave him.

 

Lessons learned while sick

I’ve spent the last twelve days feeling pretty miserable.  I was sicker than I’ve been in a long time and, frankly, it scared me.

I went through a period where I couldn’t eat anything and used some sick days at work.  I didn’t bother to call the doctor since I already had an appointment scheduled for a routine check-up at the end of the week and already knew the blood work results I’d had the previous week had some concerning numbers and wanted to avoid the inevitable as long as possible.  I figured I’d be better by the time the appointment rolled around.  I was wrong.

I got to the appointment and when the nurse had me step on the scale I realized I had lost 17 pounds in four days.  I was asked the usual question, “why are you here to see the doctor?” and I answered that I’d scheduled a routine check-up but I had been sick all week.  When I told her what I had lost the appointment took a bit of a turn.

My doctor came in and asked what had happened and I told him I didn’t know but I felt horrible and couldn’t keep anything down.  He had to put the other results on hold had tried to figure out what was wrong.  So more blood work and tests determined I had a very severe UTI and possible pancreatitis.  I ended up on a liquid diet for a week.

I did determine a few things during the whole mess.

• Losing 17 pounds in 4 days is no fun.
• Chicken broth gets very boring.
• Homemade Jell-O tastes better than the prepackaged kind.
• Strawberry Lemonade Gatorade isn’t bad.
• I don’t need soda.
• I was alright without caffeine.
• It is possible to obsess about food and not eat it.
• I’m not as hungry as I think I am, eating small meals was actually pretty satisfying.

I think the realization about obsessing over foods was the most important.  So often I watch TV and a food commercial will send me running to the fridge to eat or I find myself adding unnecessary items to my grocery list.  I’ve also spent way too much time the past few months eating fast food instead of cooking a healthy meal and this experience has helped me get away from that.  I actually enjoyed making a meal tonight, the first meal I was able to eat in nearly two weeks.

I still have to deal with the follow up for the doctor that was originally scheduled and I’m still nervous about that.  But I think I’ve had a bit of a wake-up call about taking care of myself.  I am so focused on taking care of dad that I lose myself in the process.  For that reminder, I’m thankful I got sick.

 

 

 

Dancing through the maze called life

Performing at an Earth Day celebration this spring.

I discovered dance almost four years ago.  More specifically I stumbled into dance.

I did not grow up taking dance lessons.  I wasn’t interested in gymnastics or athletics.  I tried piano lessons but wasn’t very successful at it.  Most of my friends who took lessons with the same teacher all say the same thing, our teacher was NOT interested in teaching and we don’t think she really liked us or wanted anything to do with us.  We were a way for a bored housewife to make some extra money, a means to an end.

Truth be told I tried to play softball but I was awkward and not very coordinated.  I was also painfully shy and tried to remain as invisible as possible.  I would go to school dances and try to avoid eye contact with everyone there.  When my friends and I were old enough to go to the clubs I remained at the table and reminded myself I was the designated driver.  I actively avoided the dance floor convinced my ineptitude in elementary school gym class would bring about the death of anyone unlucky enough to become my dance partner.  Then there was that shy thing.  I just didn’t want to possibly draw any attention to myself.

Then it happened.  In the spring of 2014, I had a catastrophic accident.  It snowed Mother’s Day weekend that year and to protect plants in the garden I went out to cover them.  I slipped on a board in the garden that served as a sidewalk of sorts and injured my thigh.  I figured I’d pulled a muscle and everything would work itself out after a few days.  It didn’t.  It got worse and I didn’t have a Primary Care Physician since I had just gotten insurance after not having any for a couple years.  So after sucking it up and dealing with the pain for a couple of weeks, my leg was looking like I had a baseball embedded in my right thigh.  I finally found a PCP accepting new patients who accepted my insurance plan and found out the injury was bad.  I had torn the muscle and it had become infected.  She sent me to the ER and they determined I had sepsis and was in need of immediate surgery to save the leg and ultimately my life.  What followed next was a 13-day hospital stay followed by several months of recovery.

The ordeal had wrecked my health and my sense of balance.  I lived the next year constantly fearing another fall and injuring my leg again.  As I flipped through a catalog of recreation classes from the city’s parks department a class jumped out at me, Beginning Belly Dance.  The description was right up my alley.  It emphasized stretching and basic movement and the word “balance” drew my attention.  I signed up for the class, the first night I explained my injury to the instructor and she had ideas of how to work with me.  I committed to the class for 5 weeks and at the end of the time, I was in love with dance.  I couldn’t believe that I was 42 years old and finally finding a physical activity where I felt I belonged.

As Dad’s Alzheimer’s has progressed over the past few years belly dance has been my outlet.  I arranged a space in my basement to be able to practice at home.  I still take that beginner class every week but I’m also taking a continuing class as well.  The shy girl who always wanted to blend into the wall started to perform a couple times a year.  I made belly dance a priority in my self-care routine.  I am more confident in my own skin than I have ever been.  Never in a million years did I imagine myself saying “I am a dancer.”  Belly dance has kept me grounded when I thought I was falling apart.

I was recently reading about caregiver burnout and over and over again physical activity is mentioned as a major component of self-care.  Getting enough sleep and eating a proper diet are also highly touted ways for the caregiver to practice self-care.  I’m not so good in those areas but it’s a work in progress.  In the meantime, there is always dance.

 

Backstage at my recent performance.

 

A date with my dad

I don’t get Dad out of the house as much as I would like to.  I feel very guilty about this.

I know he’s desperate to do things.  He’s not the type of person who can just sit around the house and be satisfied.  He is a doer.  He was always doing things when I was younger.  He enjoyed his job at the grocery store, all the people who worked with him commented on what a hard worker he was.  He had to keep his hands busy when watching TV, he made so many latch hook rugs during the winter and did word searches in the summer.  He loved gardening, loved golf.  After he retired he volunteered at various senior centers and a local hospital.  He and Mom went on numerous guided tours and had a great time.  It just isn’t his nature to sit at home and do nothing.

I live with him and try to do things with him, but it’s so hard at times.  I work full time outside the home but it’s a split shift.  During the school year, I work in my school’s before and aftercare program.  I also teach preschool there.  I have to be there at 6:30 in the morning to run the before care which I do until 8:00.  At 8:00 I transfer to my Pre-K room and help teach 4 and 5-year-olds until lunch.  I get a 3-hour break and go back in at 3:00 for the after-care program and I’m there until 6:00.  Summer has me working 7:00-5:00 Monday – Thursday with 1st and 2nd graders.  When I’m home I feel it’s a never-ending parade of laundry, meal prep, cleaning, and doing chores around the house.  When we go somewhere it’s to the grocery store or a doctor’s appointment.  We don’t go and do things for enjoyment.  It breaks my heart.

Fortunately, my sister is a master at taking him places.  They go walk the mall, they drive around town and find things to look at.  As his mobility has decreased she has been the one to help him get used to using the walker.  She found a companion to come in to be with him a couple days a week.  So he’s not stuck at home all the time.  But, I feel like I should do more for him.

About a month ago I decided to act and get him out of the house for a while.  I really wanted to drive to Estes Park where my family has spent countless hours over the years.  I haven’t been able to make it work.  So one day I decided to take him on a drive to Georgetown, CO just so I could buy some fudge from a candy store I remembered from when I was growing up.  We drove the 45 minutes to the town, went through the Hotel de Paris museum which was a challenge for him but you could see on his face how much he enjoyed it.  I decided another trip to Georgetown needed to happen before summer’s end so we could ride the Georgetown Loop Railroad.

I bought tickets for us to ride today.  We drove up this morning and he enjoyed the scenery.  He made it with almost no effort to the train and he enjoyed the train ride.  He spoke with other people on the train.  One of the passengers was wearing a U.S. Navy hat and he mentioned his Navy days so they struck up a conversation.  Then a couple other people sitting near us mentioned they are with the Coast Guard so the group had fun talking about their service and the places they’ve been.  It was a wonderful experience for him.  He felt important to people.  For a few moments I had my daddy back.  I even bought the package of the photo that was taken of us prior to boarding the train.  I also captured the moment in a selfie, which is highly unusual since I hate taking pictures of myself.  It’s Dad’s first selfie and my fourth ever.

I know my schedule doesn’t allow me to do this as often as I would like.  I really need to figure out how to work with the insanity of my life, and the need to have clean underwear, to be able to take him places while we still have time.  I don’t want my memories of his final years to be him sitting home bored, I want them to be filled with life.  It’s a more fitting tribute to him.

So if anyone has suggestions of things to do that can be done in small blocks of time, please let me know.

Dad’s first selfie.  He looks pretty good.

Pssst! Hey caregiver! Listen up!

Pssst! Hey caregiver!

Come here.

We need to talk.

I know you’re busy. I know you’re stressed. I know you feel alone. I know you are stretched thin. How do I know? I’m there too. I’m in the trenches with you. I’m a caregiver too.

It’s the hardest most thankless job we never asked for. We never pictured ourselves caring for a chronically ill parent. We never imagined a life where our children would require extra care. Never pictured how isolating that diagnosis would be.

We’ve learned to balance our work lives with the needs of the one we care for. How to save vacation time so we can go to the doctor’s appointments, various therapies, and drop everything to care for our loved one in an emergency. We’ve learned to navigate the lists of services available only to find they are few and far between or have months-long waiting lists. And, holy Hell, why are they so expensive?! How can anyone afford this? We walk that line between finding service and trying to get payment assistance only to be informed we don’t meet a qualification. Income is too high, insurance doesn’t cover that, you don’t live in the right zip code, the list seems never-ending. So we sacrifice. We skip a much-needed home repair so we can pay for a couple hours of respite care. We sacrifice our own needs to meet those of our loved ones. We struggle in silence and cry alone in the bathroom. We are stretched thin and continue to give.

There are people around us telling us we are angels and that they couldn’t do what we do. But the sad reality is there are even more who don’t even notice what we’re doing or resent it when we ask for their help. They are the ones who are “too busy” to call and see how things are going. They are quick to offer “suggestions” of ways to “improve” what we do, or criticize our every move. They drain the little bit of energy you have left.

I’m not telling you anything new or particularly shocking. You’re there and you know it.

I’m here to tell you great job. Thank you for caring so much. You are killing it.

But don’t kill yourself in the process. Stand firm for what you need. Give yourself a break. Eat healthy food even though the fast-food joint on the corner is easier. Allow yourself to sleep even if the laundry isn’t folded. Love yourself enough to make yourself matter. You matter to the one you care for and you can’t give care if you don’t care for yourself.

I know you’re busy and I’ve taken enough of your time but at the end of the day, we need to know some people care about us. I care and want to take a moment to say well done and keep up the good work.

 

 

Pity? Party of one.

Yeah, I admit it. My last two posts have been a couple of rambling messes that can best be described as a pity party. The thing about pity parties? They aren’t much fun. They’re lonely. They are draining. But most of all they don’t help the situation.

A pity party accomplishes nothing other than making you focus on everything wrong in life. Every single negative thing that occurs when you are in the middle of throwing a pity party is magnified until it becomes the only focus. It’s the guest of honor at a party of one. It blinds you to all the positives around you. It robs you of the joy in the little things.

I’ve realized that I’ve been throwing a fairly big pity party for myself for most of the last year. There have been so many factors that have played into it. Each one by itself would have been manageable but when all these smaller events started piling up on each other it became overwhelming and paralyzing.

Dad’s Alzheimer’s is a pretty big chunk of my life and it does limit what I can do. It alters my ability to have a social life. I can’t just decide at the last minute to buy a concert ticket and have an evening out. Arrangements need to be made to keep him safe and comfortable. It’s not just my life that gets affected, it’s the whole family. It’s not that different from arranging an evening out when you have kids except most caregivers for adults charge at least $25 an hour.

Don’t get me wrong. I know that it’s an ordeal to plan a night out when you have kids but I don’t think the level of confusion is there when you hire a sitter for the kids. They have a recognition level about the sitter, half the time Dad no longer knows who I am and I live here. So I rely on my sister to come to the rescue. He doesn’t always know who she is either but there is something familiar about her when he’s confused that keeps him calmer. But she has to arrange her schedule to give me the occasional break.

I knew this when I took on caring for him and made the commitment to keep him at home as long as I possibly can. It’s not a complaint, but it certainly opens the door to a pity party. Once that door is opened, the feeling of “I never get to do anything for myself” can get pretty strong and it becomes hard to ignore. It becomes an excuse to justify “bad” behaviors.

An example? Since I feel I have no time for myself I often stop for fast food at lunchtime. After all, who can deny that I need to eat and deserve a little time to myself? This is great until I look at my budget and realize for the third straight month I don’t have enough money to get my car fixed. The door to the pity party opens a little wider.

Then there’s the detail that what I’m eating isn’t exactly the healthiest and my waistline is still suffering. I’ve been trying to lose this weight for ages now and nothing changes. In my mind, this means I’m a total failure at eating and should, therefore, buy a bag of chocolate. There goes that budget again. Let’s open that door a little more.

Now I feel guilty because not only am I a horrible daughter who fails to devote enough time to dad because I’m working full time, I went out to lunch, I’m broke and can’t drive my car, and I’ve gained five pounds but I’ve been so tired I now have no clean clothes to wear. So, I drag myself to the laundry room, throw a load in to wash and go take a nap. The clothes wind up in the wash too long and end up smelling not so wonderful so they need another wash or they’ve sat in the dryer for days and turned into a wrinkled mess. Oh, look the pity party now has mylar balloons that remind me how big a failure I am.

As each event piles on and the pity party gets into full swing it becomes harder to see all the positives that are still in my life. All the stressors act as though they are lit with enough neon to rival the Vegas Strip while the positives are fireflies in the dark. They are there but you have to look for them. The positives try to get your attention but they sometimes seem so small and insignificant it’s hard to see them for what they are. Plus, the pity party is now in full swing and demanding your full attention until you’ve had enough. It’s time for the pity party to end.

I’ve had to invite the compassion from my sister in. She’s willing to help and reminds me often. She comes and spends the night at the house a couple of nights a week so I can go to my dance classes. She makes sure I get time to devote to myself. She’s the one who reminds me that we are a team even if most of the day to day stuff falls to me. She tells me I can take a weekend away if I want. The pity party tells me it’s impossible but the reality is I have the option. My brain sometimes says I’m the only one who can meet Dad’s needs but we have a caregiver who comes in three days a week and he does a fantastic job. It’s not up to me alone.

I have my dance classes. I have two hours of me-time where I’m doing what I want and need to stay sane. I can have a meal out on occasion, I just need to move my focus to home and not rely on restaurants. The car will get fixed, the budget will work itself out, and even the laundry gets done. When I’m not focused on throwing the pity party it turns out that life is pretty good. It may even be great.

Two truths and a lie

There is an ice breaker game that I’ve played several times in between my time as a middle school youth volunteer with my church and in team building activities at work called “two truths and a lie”.  The basic premise is you either write down three things about you, two of them are true and one is a lie, or say them out loud.  Then the other people in the group try to guess the lie.  I tend to use some variation of the same three statements each time I play.

I have given all the cars I’ve ever owned a first name beginning with the letter B.

I love pizza.

I’ve given an Emmy Award acceptance speech.

I play around with them and change the wording depending on the group.  They do provide some interesting getting to know you conversation starters. They do let people get to know me a little bit and for me that is a very hard thing with people I don’t know well.  It’s hard for me to let others see behind the walls I’ve erected around my life.  I don’t open myself up easily to others and maybe that’s why I think I’m the world’s most boring person.  Maybe I’ve even hidden me from myself.

It’s certainly a way to hide the parts of me I’m not proud of like my depression, my frustrations about dealing with my dad’s Alzheimer’s, my insecurities.  I like to think I present myself as more put together than I am.  Most days I think it works.  But life also feels a bit like a never ending game of two truths and a lie and someone is eventually going to uncover the lie.  In the ice breaker game the lie is pretty harmless but the risk of exposing the insecurities and deep stresses of life can be pretty frightening.  So the walls stay up and I try to keep people at a safe distance all the while knowing that the person who gets hurt the most in the process is myself.

While I do think the majority of my life and the persona I present is truthful I think it’s the amount of time I struggle and don’t feel put together is where I will disappoint people.  Of course I’m probably overthinking everything since I logically know that most people probably have the some of the same doubts and insecurities I do.  After all, people don’t think about me as much as I think they think about me.  Maybe I should just relax and know that in the grand scheme of things I’m pretty ok and can be ok with that.

By the way, in case you were wondering about my two truths and a lie (which you probably weren’t) the statement “I love pizza” is the lie.  I eat it if nothing else if available but I don’t really like it.

As for the other two my cars have been named Baby (1976 Nova), Beast (1977 Skylark), Belle (1994 Corsica), Bridget (2004 Malibu),  Bob (2008 Cobalt – that is actually my dad’s car).  The Emmy Award speech was given with my cousin’s award when I was a kid and saw it on his TV and asked him if it was heavy.  He told me to pick it up and then once I had it in my hand told me I had to give an acceptance speech.  It makes for a fun story.

Where did I go?

It’s been a long time since I’ve written anything.  Almost two years to be exact.  Where did I go?  To be honest, I’m not entirely sure.

Maybe I thought I had nothing to say.

Maybe I’ve had writer’s block.

Well, whatever the reason I’m dipping my toe back into the proverbial waters.  But it’s hard when you don’t trust yourself to say anything particularly interesting.

I’ve always wanted to be on Jeopardy but then I see the contestant interviews and I think “well, they wouldn’t want me because I might only be able to come up with something interesting about myself on the first day.  If I won it would prove I’m the world’s most boring person.”  I’ve tried to come up with the elevator speech and I’ve failed miserably each time.  So what can I do to remedy this?  I figure I have a couple options, both have drawbacks.

Lie.

Put myself out there more.

Lying is a bad idea because I’ve maintained close ties with a lot of childhood friends who would be able to prove things that didn’t happen.  So that method wouldn’t work other than taking events I wish I had happened and putting them into a work of fiction.

Putting myself out there more isn’t a bad idea there’s a courage factor involved though.  I mean I admit I do have a dream about trying skydiving but it’s a bit problematic.  I’m afraid of heights.  I’m also afraid of flying.  So maybe this is not the way to put myself out there more.  However, there is indoor skydiving.  That might be a way to add a bit of adventure to my life.

So there’s a little glimpse into how my brain attempts to function.  Maybe a challenge to myself is in order.  I think maybe I should challenge myself to try three things between now and the end of the year to break out of my bubble and begin to develop a few things I could use in a Jeopardy contestant interview.  It’s a thought.

Challenge Day 7: Like Your Reflection

I’ve been slacking. It would be fair to say that Day 7 wasn’t an easy one.  The challenge was to look in the mirror and remind yourself that you’re more than a number on the scale. Actually talk to your reflection. I did not do well with this.

I have a hard time with my reflection and lately I’ve spent a lot of time thinking that I look pretty beaten up.  In truth the main thing I see in the mirror is a person in desperate need of rest.  I’m not talking sleep, although that would help.  I’m talking the rest that only comes from the soul.  The mirror shows someone who is worn out.  I’m on the verge of total exhaustion and it shows.

I had to approach this one slowly.  I had to take some time to work past the exhaustion and general poor view of myself.  I ended up looking in the mirror and saying saying it’s time to take care of me.  It’s a long time coming.

I think this one is going to take a while.

 

Challenge Day 6: Clear the Clutter

Today the challenge was to clear the clutter from a desk or table top. I did not do this. Instead I opted to clear the clutter from my refrigerator. I searched through the condiments and tossed the ones that were so old they needed to be tossed. I pulled out some containers that just needed to go. You know those things that get shoved to the back of the fridge and forgotten about until you are sure you’ve created a new life form? I sometimes wonder if I should name them or at least give them a proper burial.

From there I moved to the recycle bin. Since it’s a recycling week I made sure I got the recycling out.  Dad still takes the newspaper, it helps him know what day it is.  I sometime think I should dump it but the constant questions about what day of the week it is would get worse. But, I’ve allowed them to stack up a bit the past few weeks.  So I put those into paper bags and got them ready to go out.

Finally, I decided to go through the pile of papers that need to be shredded and put next to the shredder for dad to do.  It is one chore that dad can do.  I want him to feel useful but there is so much he has forgotten that its hard to let him.  For example his definition of washing the dishes is to either run them under water and put them away or wash them but forget to rinse them.  Needless to say I’m always inspecting the dishes and loading the ones he’s “washed” into the dishwasher.

It did feel good to get some of those items I’m always pushing off taken care of. I always think there are more pressing things like laundry or cleaning the bathroom that need to be done first. I think I needed the reminder that the little things need to be done as well.

And I must admit, it felt good to get them out of the way.