Taking a Break from Caring

“People tell you to keep your ‘courage’ up. But the time for courage is when she was sick, when I took care of her and saw her suffering, her sadness, and when I had to conceal my tears. Constantly one had to make a decision, put on a mask and that was courage.” -Roland Barthes 

It can be overwhelming and even a little scary to leave your loved ones in the hands of complete strangers. Even leaving a person with PSP (or any debilitating illness), in the hands of family or loved ones who do not provide daily care can be somewhat nerve-wracking. But, without breaks caregivers are at risk for burnout, increased stress, and fatigue.  In fact, when caregivers are studies determined that they experience a 23% higher level of stress hormones than non caregivers.

Negative Impact of Stress on the Caregiver

Stress negatively impacts our thoughts, feelings, and behaviors. For example, WebMD notes that increased stress is linked to higher incidents of alcohol use and abuse, sleep disturbances, obesity, high blood pressure, heart disease, and diabetes. Even though we can feel guilty leaving our loved one in someone else’s care, it is critical to take breaks when we are able to.  Without these breaks not only are we at risk for the above-mentioned health impacts but also, caregiver burnout can lead to increased impatience with our loved one.

Taking a Break from Caregiving

Respite care is an invaluable resource which caregivers can utilize for a break. While some people find that twenty-four hour or week-long respite care in a facility is the best choice for a loved one- even finding one afternoon a week can be enough to reduce some of the fatigue and stress associated with being a caregiver. There are several options for respite care. First, family and friends are often willing to provide a few hours of care. Second, Medicaid, Medicare, and other insurances will usually cover a few hours of in-home care time.  The ARCH National Respite Network offers a comprehensive list of resources for finding for, paying for, and utilizing respite.

Walking Away

Once an alternative care provider is in place, the challenge becomes walking away. When you are the primary or even secondary caregiver, it can be very challenging to let go and give yourself the time away. I still remember the feelings of powerlessness I felt whenever I had to arrange for someone else to provide care for Mom. I constantly wondered how it was going?  Was Mom happy? Was she getting her needs met? After Mom asked for and went to the nursing home, my sister and I called the facility way more often than we needed to.

The first morning Mom was in the nursing home I had extreme difficulty letting go, I didn’t know if they were helping her in the way she preferred, I was anxious about her inability to communicate her preferences, I was scared that the staff wouldn’t be patient or nice to her. Eventually, I made a binder of Mom’s preferences and needs that she can use to communicate with people on the days where she is not able to clearly talk. The binder combined with other assisted communication devices and the fact that they now know her has helped me to let go. When Mom was home, talking with and explaining her care to new caregivers allowed me to feel more confident in their ability to assist her.

Resource

One of the things that helped me to let go and take breaks was the knowledge that the person taking care of mom knew her routines and preferences. During the years of in-home care, my Dad would leave notes for the aides, and we would call at times. I talked about creating a worksheet and document about Mom’s needs, but, time was never on my side. The following is a worksheet that I wish I had developed for us to use when we left Mom in someone’s care: Caregiving Break- Worksheet  (PDF Printable Version). 

Caregiving Break- Worksheet

 

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Hold On Pain Ends

“Hope is the thing with feathers That perches in the Soul” -Emily Dickinson 

When faced with hopeless situations it can be tempting to give up. In those moments, an acronym for hope comes to my mind: Hang On Pain Ends. When I was growing up one of the pieces of advice, my Mom often gave me was, “don’t make a permanent choice in response to a temporary situation.” In moments of despair, profound grief, and well hopelessness it can be tempting to throw in the towel and give up. But, it is precisely in those moments when sometimes all one has to do is hold on.

Hold On

Holding on for me means doing the best I can with the situation in front of me. Some days, the best I can is merely showering, eating three meals, and not entirely losing my shit. Other days, the best I can is being present for the people in my life and giving back to the universe around me. When life happens, and I have to confront a hopeless situation it is the latter, not the former that sets in. But, in the confrontation of hopelessness, simply putting one foot in the front of the other can be enough.

There is a reason the saying, “it is always darkest before dawn” is a cliche. From states of hopelessness can come great joy and beauty. But, in our journey to the other side of pain, we have to hold on and face the pain.

Pain Ends

Think back to the last time your heart was broken, eventually with time, distance, and contemplation the pain left. Pain heals, ends, and changes. The worst pain we are experiencing today will eventually end. One of my favorite stories comes from an alcoholic in recovery that I know. For this person, we will call him Joe, every day for over a year he was miserable sober. Not unhappy, not discontent, straight-up miserable. Then suddenly, one day, he wasn’t miserable. He was so shocked he called both his twelve-step sponsor and his professional therapist, he just had to check and ask what he was feeling. Joe had no idea when his misery would end. All he knew was that every day he was absolutely miserable. But, he had hope that someday maybe it would get better, so he held on and eventually after months of not giving up Joe was no longer miserable. This is not to say that some misery came back from time to time. But, as Joe recounts those time became less and less and less until eventually one day he simply couldn’t remember the last time he had felt miserable.

For me, HOPE is the acknowledgment that eventually pain ends (even if just for a moment), and healing is possible.

HOPE

Fatigue and I

“When we are tired, everything seems so very much worse” -Jane Green

The other day I woke up with negative spoons. For some Crohn’s patients, my reference to spoons is an all too clear reminder of Christine Miserandino’s article, “The Spoon Theory” written about her journey with Lupus. Miserandino’s story of spoons is her attempt to explain to her non-sick friend what living with Lupus is like. In the story, Miserandino compares her daily journey to spoons. In this compelling story, Miserandino says that people without illness have unlimited spoons to do whatever they wish with while those of us who have illness have a limited amount of spoons with which to navigate daily life. I absolutely hate, detest, loathe, and can’t stand when I have limited or negative spoons. For me, it is the absolute worse part of managing illness and one that I would much rather do without.

In completing research for this post and reading about fatigue and IBD, I became increasingly agitated and pissed off the best solutions to deal with fatigue are 1. Manage IBD, 2. Check for Anemia, 3. Manage psychological symptoms, 4. Improve the quality of sleep, and 5. Investigate medication side-effects as a potential for causing fatigue. While it is important that people with IBD pay attention to all four of the aforementioned recommendations, as someone who deals with persistent and at times debilitating fatigue, I will say that none of them have done much to alleviate mine.

The reason why fatigue makes me so angry is that it is the one Crohn’s symptom that I cannot push through. It is the one Crohn’s symptom that stops me in my tracks. I live in with daily pain, and I have learned how to work through the pain. I can have a partial bowel obstruction and still function as a participating member of society. However, when fatigue hits there is absolutely nothing I can do to make it go away besides stop, and the last thing I want to do is stop. For me, having to cancel plans, not do something I am looking forward to, and having to choose how to spend my limited energy is mentally and physically exhausting. I equate fatigue with my body failing me, and I hate how I feel when I want to do something but just can’t. I also hate that for me I have to make choices every day about the tasks that I want to complete- do I want to do laundry today or shower? Do I want to spend time with my family today or work? Do I want to cook dinner and save money or do I order out so I can clean my bathroom? Sometimes, my house is a mess, and there is a daunting tower of laundry staring me down, and I don’t want it to be that way, but, I had to make choices to either work, see family, clean the house, do laundry, get groceries, etc. and I just didn’t have anything left over to put into the mess or the laundry. When I cannot do something because my body has decided that it has reached its limit I just want to scream. Especially, when that something I want to do is at 10 am, and I cannot believe that I am already so exhausted.

I highly doubt anyone likes having limitations and I know my general detest for fatigue does not help me cope well with this symptom. I know that my own emotional process with fatigue makes me more likely to be cranky when I have it, and I also know that for me, some days will be easier than others and I must allow myself to throw the fatigue-related hissy fit so that I can then manage it. I am a big believer in stomping my feet and just getting the anger out.

I do not have to like dealing with fatigue, but I also have zero choices in the matter. So, I spread my energy out through the course of the day, take a nap in the afternoon, and consume copious amounts of coffee (I know coffee is bad for IBD and fatigue is bad for paying my bills!). I also manage my fatigue through letting others in my life know when my spoons are running a bit low. Even though I (like most people) do not always like asking for help, I also know that asking for help allows me to live my best life. When I alone do not have to manage it all by myself life becomes better.

And They Lived Happily Ever After

“’So what’s the point, then, if we can’t be happy? Why are we doing any of this?’ ‘Oh, there’s definitely happiness,’ Jack said, turning his back on the ocean and looking at her. ‘But it’s just about moments, not ever-afters.” He grinned. “Like when you’re right in the middle of the ocean with your friends, with no one trying to kill you in any kind of horrifying way. You have to appreciate these moments when they happen, ’cause obviously we don’t get many of them.’” -James Riley

I recently had the opportunity to reflect on the idea of “happy ever after” as it applies to my families’ future. At times during this experience, it has been easy to get lost in the hopeless, living one crisis to another. In my reflection on this I wrote, “For months, I had been in a state of survival. Living one crisis to the next and waiting for the damn phone to ring for the next one. From medication reactions to aides getting lost and Mom having to be trapped for hours without any assistance to falls that brought Kate and I to the ER…from suctioning food out of mom’s throat after a really bad choking incident to learning how to humbly with grace help my mom to use the toilet…watching someone die of this horrendously cruel illness has been the single most hardest thing that we have ever done.” In all of this suffering, it can be hard to find time to breath let alone hope or optimism for the future.

Crisis

As I reflected further on the past several years of crisis, I found myself writing, “Every step of this journey, has been one thing after another and those things have been huge, time-consuming, painful, and have resulted in all of us having memories which we would prefer not to. But, in all of this suffering, there is joy. After almost losing Mom last weekend, I saw her on Wednesday and she spoke seven words in a row to me- something I did not think that I would ever hear from her again. That was a good day. This entire process has taught me valuable life lessons- for example, to be there for Mom I have given up a significant portion of my income. I would rather be living paycheck to paycheck and be there for Mom than have all the wealth in the world. But, anyway when that notice came as a family we were trying to figure out how to continue providing care for Mom with my illness getting worse, Dad’s financial situation which we all knew was not good, my brother’s grief related poor choices which were leading him down the wrong life path, plus our usual life stuff- Kate being the mom of a toddler, Emily living in NYC and dealing with guilt of not being closer, etc. That notice changed everything for me- I stopped surviving and starting focusing on other things.” From this low point in the journey, I made a conscious choice to prioritize. I found myself with two mantras which have served me well: 1. Not my monkey and 2. This is a marathon, not a sprint.

Not my Monkey

Managing mom dying has taken considerable resources. We are lucky. There are five of us. For the first year, I wanted to be an active participant with all of it. From applying for benefits to funeral planning every part of it, I wanted to be involved in and helping with. But, we didn’t need five people on all of the tasks. Since my existential crisis and loss of faith, I have separate my monkeys from everyone else’s monkeys. For example, we recently had a situation that needed copious amounts of emails and phone calls. In this situation, there was not much I could offer to it. Rather than calling into conference calls and being an active part, I allowed my sisters to take the lead and had them merely CC me on the emails. In this way, I knew what was going on, but I freed up the time that I would otherwise have had to spend on the phone or participating actively. While they managed that, I spent time with Mom at the nursing home and helped with developing a new plan for eating. In another example, I am the weekday nursing home person. I am available during the week, so I visit on weekdays. On the weekend, I stay home and manage my own life. Sometimes I miss out on seeing extended family or visiting with my brother, but, I am able to have time at home to rest, work, grocery shop, etc. when I otherwise would not.

This is a Marathon Not a Sprint

We have limited time with Mom. In knowing that she is dying, it is tempting to spend every resource and every ounce of energy being with her. But, if I give ALL of my resources right now, I won’t have any for next month or next week. So, I have to prioritize and allow myself the ability to say “no.” Back when Mom was at home, I didn’t have many choices. The times and days I said I would be there she and Dad were counting on me. If I didn’t go then, Dad had to call out of work, or we would have had to deal with the agency and beg them to find someone to step in. Mom’s days were always harder with the agency, and there was enormous pressure to make sure that no matter what I was there. Now, even though Mom has skilled nursing care at the nursing home, I still feel these pressures. When I tell Mom I am going to be there; I show up. No matter what. But, it is on me to manage when I am going to show up and what I tell her. It is also on me to recognize and forgive myself when I can’t. It is a constant readjustment of boundaries, schedules, and knowing that if I have nothing left over, then I am no good to anyone.

Finding Myself

I can’t describe it accurately, but after losing my faith over the summer, I regained it. From that low point, I found a calm core inside of myself which I had thought I had lost- the “everything happens for a reason, and it will all work out” core. I like you try my best to find optimism in these dark places, and I must believe that 1.) everything happens for a reason, and 2.) suffering has meaning (a great life lesson from Viktor Frankl and “Man’s Search for Meaning

I do believe we get a happy ever after- we just have to redefine it. Happy every after in a new chapter without this most recent crisis lingering over our heads. Happy every after to enjoy those seven words in a row. Happy every after to make meaning from all of this. I don’t know yet- my higher power did not consult me and ask me for my permission for any of this, and the universe often provides these lessons in retrospect, so the jury is still out on the exact ending. But, I do think we get a happy ever after just not the one we would choose if we were asked.

For today, Dad can spend time with Mom after work, and they can enjoy each other’s company. For today, I can sit on mom’s bed with her, Red Sox playing in the background, and help her to remove her toenail polish and trim her toenails- lost in the comfort of being with my Mom. Ultimately, all we have is today.

In the words of the Beatles, “and in the end, the love you take is equal to the love you make.” We are blessed, as, despite everything, the one thing I know without a doubt is that love remains.

An Introduction to Anticipatory Grief

“He’d lived long enough to know that everyone handled grief in different ways, and little by little, they all seemed to accept their new lives.” -Nicholas Sparks

After Mom was officially diagnosed with PSP, I set about doing what I do- reading and learning everything I could about the topic. While this method works for me, I do not recommend this path to all loved ones who are in the PSP journey. Watching videos of people with late-stage PSP was incredibly hard, I curled up in a ball in my comfy chair, a box of tissues beside me, computer on my lap and tried to wrap my head around what was coming- and it seemed almost impossible. But, those videos haunted me and began to prepare me for the future. They also triggered my anticipatory grief.

What is anticipatory grief?

Anticipatory grief is grieving that begins before someone dies. In my case, the grieving began with the label of PSP and understanding that it is terminal, progressive, and non-curable. The symptoms of anticipatory grief vary from person to person, but, these symptoms are generally the same as those experienced after death. In my case, the feelings of anticipatory grief are complex and interwoven into the grief I feel watching my mom lose various abilities.

What do I need to know about coping with anticipatory grief?

  1. No two people will have the same experiences!  While I have experienced profound anticipatory grief, Medicine Net  points out that not all people have symptoms of anticipatory grief. In other cases, anticipatory grief might have the same symptoms of depression whereas for others the senses of loss might manifest as anger.
  2. Use your support system! I have a diverse and expansive support network of people which have helped me to process Mom’s death. In addition to my friends and family, I found a PSP support group online which has been critical to helping me to both process and learn about PSP. The Cure PSP organization has on online find support tool and Grief.com offers a searchable list of support groups throughout the United States. Finding support can be critical to processing and coping with anticipatory grief.
  3. Be gentle with yourself! When caring for someone with a terminal illness there can be days when it simply does not feel like enough. Between normal life responsibilities, care taking, and grieving it can be easy to slip into destructive behaviors or harmful patterns of negative self-talk. In these moments, learning to recognize the behavior and reminding yourself to stop and breath is critical.
  4. Give yourself the time! It is okay to feel exactly how you are feeling. Take a minute (or longer) and allow yourself to feel. Instead of choking back the tears give yourself the gift of allowing them. If you are feeling angry allow yourself to be angry. Stomp your feet, yell, tell God to “fuck off” if you have to. Then after feeding the feeling for a brief time, get up and get moving! Do something, anything!
  5. Seek professional help if you need to! Anticipatory grief can be overwhelming and can become increasingly complex. Some people find that a professional can best assist them through this time. If you find your grief becoming overwhelming or impairing your ability to function, then it might be helpful for you to see a therapist or join a professional support group.