It’s personal. I’ll accept feedback but not pity or sympathy – just constructive, loving suggestions and ideas.
Someone I care about deeply is not well. They are hurting physically, emotionally and spiritually (let that mean what you will. If it is a bothersome term, as it is for so many of us, let it be your higher self, or the self that does good, or which loves and cares for others, or which has compassion or is at peace with itself– spirituality does not reflect a ‘constant’ to me. It comes and goes as each of us learns to deal with what life sends our way). If you already have a concept of Spirituality, throw all of what I just said away, and use what works for you. I just don’t want anyone to feel left out by a term, it is unnecessary – I mean nothing institutional by it — it is more an ideal for me, never to be fully achieved but always worth striving for and especially worth reflecting on when I significantly miss the mark.
<breathe> We will get through this post, I promise. It took me time to write, to get closer to expressing feelings in words. It still seems not right, but it is as close I can come today.
For several years I have taken care of a loved one in my home, a parent who stood by me through thick and thin, no matter what I did. One of the few people in my life able to do so. She was strong…there was a time I felt she was perfect, but she is human like me – with faults and disparaging thoughts; with great love and a willingness to adopt any lost soul who struggles to find their way. She is a ‘real’ mom – protective, patient and ready to wield a wooden spoon when I put my life and risk and scare the crap out of her.
Everyone who meets her likes her, though she’s not sure why. In her lonely times she does not even believe they should. She is human. She wants to be there for others, but wonders if she really manages to get things right.
Mom has chronic pain and illness too. When mine first set in like a run-away freight train, she rose to the occasion, learning how to set braces, figuring out how to re-organize our home to meet the demands of pain and limitation; of diet and simplification.
She sacrificed her lifestyle for mine. Her pain and disease had not yet arrived.
Over time I felt as if mom stopped listening to me. I thought perhaps my situation was becoming too overwhelming.
Then it felt almost personal. No matter what I said, she forgot. I would share how important something was to me, and then later it was as if I had never shared anything at all. I was so blind and so caught up in ‘my’ situation, I could not see hers approaching.
Today, mom sometimes can’t remember one moment to the next. She will say, “How long should I microwave the popcorn?”
“Two minutes”, I call out as she heads for the kitchen. I hear a cabinet open, a box set on the counter and the wrapper floundered with until it releases a bag of popcorn.
Then she calls out with the frustration of a stern voice, “How long do I microwave the popcorn,” followed by a heavy breath. She does not remember asking just minutes before, but she inherently knows she should know this answer. She is hard on herself, she is unhappy.
She says to me sometimes, “I didn’t want my life to end this way.”
She does not need to say more. I understand. She is a very smart woman. She defied the odds, acquired a degree in her mid-thirties and made it up the ladder in her profession. She was respected and consulted.
I still see her as smart, but something in her brain has changed.
Recently, mom underwent some tests. We were supposed to find nothing unusual. An insurance requirement really, so we could take the next step in addressing the specifics of her increasing loss of memory (we don’t care for the “D” word — we have that right).
She had the brain MRI and we waited…
I have been ill long enough to know such waiting is not so they can prepare to give you good news.
Finally a call came. They saw something — and my mother’s first real experience with repeated poking and prodding began.
We know now what is there. It is not good. There may be a need for significant intervention. She may need surgery on her heart and in her skull.
This terrifies mom. She does not like hospitals – people die in hospitals. She will not want to go, though she may choose to go anyway.
Still, mom is not sure how much more she wishes to undergo. Each new test result requires I consider how to explain it so she can make as autonomous a decision about her care as possible. It takes time to find words which clarify.
When she asks about the prognosis, it is difficult to discuss. Mom tries to assess, tries to contemplate. At moments when she is exasperated she shares through her tears, “I just want to die in my home! Can I just die in my home?”
It is my number one charge. She has been clear on this for decades. But now it is more real. I assure her it is her right and I will defend it with all I have. I tell her there is not enough military might in the world to take this right from her. This is my honest belief, not a lie – I will do everything to ensure it.
I’m not sure how many people with chronic illness and pain find themselves caretakers as well. It’s not easy. I don’t know any caretaker who will say it is easy.
People who think their own road is difficult have no real comprehension – and how could they? They say I need to get to a face-to-face support group. When I explain my situation, they say I should ask for accommodation. I think the accommodation would be forth coming, it is the driving and walking and the discomfort as I will need to lay on the floor or a sofa or something for the hour.
In response they assume I do not want to go – nothing is further from the truth. I have experience with support groups – the have been a lifeline at times for me. Not only support and practical tips, but hugs and listening ears and compassion abound. They are helpful and a ‘safe zone’.
I am looking for one nearby – trying to sort it out – it is not procrastination as much as it is coordination. If it is on a day when I visit a physical therapist, I must move that appointment. I cannot do both the same day.
People with chronic pain and illness have complicated, bureaucratic lives. We are like a clown on a unicycle constantly completing paperwork for some public or private entity with the left hand, and waving to those who are investigating whether we are ‘fakers’ with our right. We are constantly responding to strange questions while attending to our families and pets and, in more instances than the media or politicians would have anyone believe, our full-time jobs.
I have written most of this blog in the wee hours of the morning, when it is quiet and I should be sleeping, but I can’t. My mind is spinning with how to ensure mom’s needs are met while not sacrificing my own so much that my ability to provide for her is diminished, or worse, completely impossible.
If you do not have chronic pain and chronic illness and think you understand now what we go through – trust me – you would fall asleep reading this if I painted the whole picture, it would be so long.
I find people with chronic pain and illness to be quite amazing – the majority do sort these things out on rather minuscule budgets. Trust me, SSDI doesn’t pay enough for them to hire an aide, nor a cook, nor much of anything. So we can’t just ‘farm’ the effort out.
I have gratitude for my neighbors, who freely offer help. Who will come and sit with mom and chat while I take care of other things which would upset her to be present for.
She does not like to hear from doctors about my pain or hers, nor her condition. It is scary for her – but she is the mother. She thinks she must be strong and capable for her daughter who needs care.
It’s not that I’m weak, it’s just she is the ‘mother’. It is hard-wired for her to be motherly – it is as it should be. I love this about her. No matter what happens, be it amazingly good or horribly painful, she rises up as a mom. If asked, she would listen to everything doctors say about my or about her condition and she would hold her head up and acknowledge the news with a pleasant smile.
It is not until the night, until she thinks all are sleeping, that I sometimes hear her cry.
Although we don’t have all the information for a final prognosis, it is not good. Mom is tired of being poked and prodded, to be told she needs another poking and prodding appointment so they can further assess the situation.
Her most recent test was yesterday. I know the results, but I don’t understand them. I know what they think she should do next, but I don’t know why. So I must pick up the report tomorrow, look up the big Latin words and then figure out how best to explain it to her without them.
She told me it was the last test she will do. She is tired. But that was a different day, which she likely does not remember.
I will start from scratch and explain it again for her when the next doctor tells us what tests he wants her to do. I will remind her she has a right to decline and a right to continue, and that no matter what she decides, I will love her with all my heart; I will not abandon her or send her away from her home.
She will ask the most appropriate questions. I must prepare for them; have answers lined up for them. I must be calm and supportive. I must be honest about what I do understand and honest about what I do not; what we need the next specialist to explain to us.
I think this is the most difficult time – knowing there is an issue, but not what can or can’t be done. Even if the final answer isn’t good, it is better than not knowing.
I strive to live in the present, it feels the best, but I understand mom’s concerns during this ‘not knowing’ phase. It leaves you stuck in the future, or at minimum, waiting for the future to become the present. It is an odd place to be.
It reminds me I can always strive for more faith to trust the future will come to pass when it is due, no sooner and no later. This allows me to focus on the present, address what I can in the present and leave the future for when it is finally in front of me. Such nice platitudes if only we could be in that place all the time.
And by ‘faith’, I don’t mean hoping for a miracle – I mean believing I have what it takes to be present for mom; to be supportive and compassionate; to have that peaceful calm in her presence; to be her ‘rock’, the one she can turn to and rely on.
This requires ‘faith’, as my body is not predictable; unreliable. I must have faith in my ability to take the next required action with sensitive diligence.
It reminds me of all the perfectionism I had to let go of in my life. Some folks say it is okay to strive for perfection, we just ought not expect it.
I have no idea what perfection is or looks like, so I don’t want to strive for it anymore. I just work to do better, to take something from my mistakes, and try to find that sweet ‘acceptance’ spot just a bit sooner the next time life decides it is a semi roaring down the highway of ‘me’ or ‘my family’.
I have a friend who believes to be a ‘perfectionist’ is to avoid doing anything, since nothing can possibly be ‘perfect’. It is the ultimate excuse for avoiding action.
If this is so, I’m not a ‘perfectionist’.
But as a daughter, in this time, I am feeling some ‘perfectionist’ feelings. I am still acting, still doing, but there is such a deep desire to get this ‘right’ for mom (and I’m not sure what ‘right’ even is).
So in my quiet time I focus on remembering there is something deep inside me that knows what to do – to trust that still small voice and do my best. To accept guidance however it may present itself.
Sometimes I call these times the ‘awry’ times. When there are strong emotions and no fulfilling or efficient way to be rid of them. When what seems to be happening and fairness collide with such force it hurls faith and confidence all about in millions of directions away from myself and my center. My floundering and missteps seem so magnified – but in my quiet time I can see they are far fewer than they once were.
Still, in my quiet time there is a voice which interrupts rudely and says, “Perhaps you have improved, but you are not where you need to be. You are so, so far from where you need to be.”
I thank it for sharing and remind it this is my quiet time. I visualize a chair in the room it can sit in and wait until I am done. Mostly it complies, and in that moment I am struck with some gratitude, some peace of mind.
I think this is how love is when a loved one is hurting inside and physically. I can assist, provide comfort and warm memories to assure her of my love – but I cannot ‘fix’ her, I can’t make the pains and fears on the inside dissipate completely, I cannot bestow faith and I can’t heal her.
I am not naivé. I know this is how life has always been – it is what makes ‘life’ so powerful, so cherished. It is here for just a brief time – it is driving me now to be more, perhaps even more than I am.
This is not a concern really, this is love.
It is when it is over, however it turns out, be it healing or passing – how do I feel then? Can I forgive my mistakes so I can see mom without feeling regret inside? To think of her and have such pain arise, that is not love. To see someone and think each time of ‘what should have been’ or ‘what I should have done’ is not love. Love such as that is lost to the past.
This is the awry time; the lost time; the fears I have during this time. I want to love her when this time is done, as deeply as I do today, without regret stomping all over it. This is when I must forgive myself and all those involved who may not have been able to rise to the occasion in every moment (or in some cases, in any moment).
This requires faith, one of the strongest forms I know. Faith that all have done the best they could in that moment: Doctors, family, everyone – even me. Could we do better? Absolutely! We can always learn more and do better, but in whatever moment we find ourselves, we are doing the best we can do at the time.
Again, these are nice words. If it sounds good, but also unbelievable, and it did for me for years, here is how I came to it:
1) I am not an evil person,
2) I like to be helpful and supportive,
3) I strive to do a good job most of the time.
Therefore if I could have done better at any given moment, I suspect that would be my inherent tendency, therefore I am likely doing the best I can at any given moment.
Some might see being in too much pain, being tired, or being whatever it is that interferes with me doing something at peak levels or with greater concern, as a flimsy excuse. I don’t.
I challenge myself to be realistic in this regard. My body does not rappel anymore, it does not wiggle though caves, it doesn’t have what it takes to drive 15 hour days to find and chase tornadoes down dirt roads.
My body does not sleep well, it hurts and wakes up; sometimes it doesn’t sleep at all. When I am tired, I do not perform as well as after a good night’s sleep. This is natural and normal and true for most folks.
I am not bad, I am a person, like all people, with challenges. I am doing my best to address what needs to be addressed.
Like all humans, i can get overwhelmed, I can say the dumbest things, I can forget where I am supposed to be at a given moment.
At least, over time, my ability to be where I am supposed to be when I am supposed to be there, prepared to do what I’m supposed to do has improved — but I’m not perfect. That too, is unrealistic.
On little stuff, the concepts ‘everyone is doing the best they can’ and ‘I am doing the best I can’ seems easier; maybe even reasonable.
This experience isn’t little for me, it is big and scary. It’s about family and doing the right thing. It is about respect without manipulation toward my personal wants and desires of the outcome. It is hard. (sigh) Grandma once said, “Love is always hard in this way. <pause> Love is hard.”
In these times, it is so important to stay close to the principals I believe in and not let my brain revert back to old ways and old fears. Discipline is key. Staying in the present is key. Forgiveness is paramount.
When I veer from these ideals, my best bet is to take time to find them again, lest I begin to whirl in and out of reacting instead of realistic assessment and response. It is best for me to take some time to be still, to sit that ‘lesser me’ voice in a chair of its own for a bit, so I have find my higher self.
I do my best. At any given moment we all do our best.
Thank you for listening. What are your challenges? How do you rise up for them? How do you forgive yourself you missteps or others’ when ideals are not achieved?
Pass it on – we could all benefit from sharing out solutions.