by ML, Florida
This is not about hope – because there is none. This is not about self pity – because there is no time for that. This is not about the person that is impaired or sick. This is about the person who cares for someone in their life that they love deeply and who will never get better. It is about the process that you will embark upon that in your wildest dreams could ever imagine – you are stepping out into the unknown. This is about the journey.
My journey is with Joe. A man I couldn’t wait to be with and someone I would never want to be without – until now. We were both at the top of our game, we had great careers, had many friends and colleagues that we interacted with regularly and we traveled extensively for both work and pleasure. All of this stopped a decade ago – I was 43 and Joe was 51. When I knew that a new journey was beginning – we rushed to do as many things as we possibly could before the inevitable incarceration. For you see, I have Joe’s disease too. Not really of course, but whatever has to do be done to manage his situation – I am there every step of the way managing it for him. People call me a “hero” – funny I do not feel “heroic”. Joe’s doctors shake their heads and say “she is doing a Herculean job” – funny I do not feel strong.
When people ask how we are doing – I have found they really do not want to know. Our friends, family and colleagues feel the necessity to ask – it is merely a social convenience and not a real “want to know” question.
One of the more astonishing things I have learned on this journey is just how stupid people can be. Is he going to get better? When is he going to die? I answer with a non-answer….how are you doing? How’s your weather been? It’s been nice here too.
At this stage our journey has led us to audio books, movies & wonderful food – because Joe can no longer do anything else. If I were to judge myself by what I do for Joe – I would be terribly disappointed. Things are becoming more complex and complicated & Joe needs so much more attention every passing day. I have re-purposed myself to derive some sense of achievement with tangible outcomes. Therefore, I derive a sense of self worth by making gourmet meals and gardening. These are tangible. I need to grasp this – because the rest my day is routinized, scheduled, mundane and for lack of a better description – totally lacks creativity. We have turned the house into a small sanctuary where we continue on what will be the rest of the journey.
When people ask me what I do – I say nothing. Nothing could be further from the truth. But, for those of us who defined ourselves by “what we did” I find being on a journey with someone does not fall into any category. Caregiver is a trite and meaningless word to me – because it is so much more than “giving care”.
How Did You Get Here?
This journey is about your lover, partner, husband, wife, child, mother, father, sister, brother, neighbor or someone you care deeply enough for to take care of them in their time of most desperate need. You were not trained for this – there was no course or training to take. This is about becoming your own guide on a path that no one has ever been down before. Your journey is unique. Sure, there have been others before you with similar situations – but no one has taken your path – and no one will ever again. Your journey is all yours – and yours alone.
As you evolve through your journey there are many externalities that will influence the decisions you make. Which fork in the road will you choose? You can only make decisions with the best information you have at any given snap-shot of time. The journey is fluid. The journey is dynamic. As you transition from one set of circumstances to another – you can rarely “go back” and start again. There are no “do-overs”. Unlike a geographic journey – there is no one to ask along the way or to stop and ask for directions.
Cast of Characters
On any journey you will encounter chance meeting with strangers – restaurants, bars, hotels and many others in the service industry. Never before in your life have strangers “directly impacted” your journey – because you were in control. Once you begin the process with doctors, hospice, community services, lawyers, financial people, clergy, pharmacists, insurance companies and so on – strangers start to guide your destiny. It is disorienting. You need these people – yet you do not know them. You will have to interface with them in the most private of spaces and places – your home – and you will have to trust them.
The “One More Thing”
When someone begins the process of needing help due to illness, age, injury or other impairment it may seem benign at first. Some people experience a quick sudden need – such as an injury – while other situations are more insidious. The “system” of care in this country is good at dealing with the acute phase of a person’s problem. Functionally, we are not so good at the management thereafter. [Note: We have long-term care facilities (which usually require substantial financial wherewithal – or the significant lack thereof). The people in the middle either fall through the cracks and die or are cared for in a place you would never see – their home].
As the journey begins – it is impossible to imagine how you will get to the end – there is no road map. It is impossible to comprehend how you will react – because every twist and turn will evoke a different emotion. It is impossible to schedule – because there is no timetable. It is impossible to manage – because every day may bring a new set of issues that even the best of managers could not foresee.
As you embark – simple modification of a “normal” lifestyle may be all that is necessary. Over the course of time it becomes far more complex and daunting. Somehow, it may not seem like much has happened – until a “look back” indicates how much really has. When was the house modified to accommodate the person? When was the wheelchair purchased? When did “normal” schedules go away? When did you stop working at a traditional job to stay at home full-time? When did you stop seeing your friends? When did you lose contact with the outside world? When did all these things happen? How did it happen to me? You promised yourself you wouldn’t do the “one more thing”. And yet, here you are.
Unlike the high profile prisoners that are at home with an ankle monitor, you are nonetheless incarcerated in your home. You can’t leave without coverage. In many cases, you can not bring the person with you. The level of interaction with “outsiders” begins to diminish [the journey tends to do that – not that “outsiders” are uninterested or uncaring – the journey is just too long and they can’t stay until the end]. It takes great mental fortitude to not slip into isolation. Incarceration is one thing – but solitary confinement is quite another………you will have to find the inner strength to keep your own sanity.
The Price Tag
Never before in your life will you be as uneasy financially as you will be on this journey. There is no “price tag”. Who would “buy” a trip where you did not know where the destination was going to be, when the journey would end and how much it would cost. Yet, here you are. The costs that are associated with this journey are incalculable because there is so much uncertainty. The landscape continues to change – you feel as though you are sand dancing.
Quality of Life
How do you make the journey as pleasant as possible? How do you manage your environment to create an illusion of normalcy? Fortunately, we live in a technological age where information, entertainment and resources enter our lives from external sources every minute of every day. As mentioned before, what can you do to give yourself a sense of accomplishment? Choose things you really enjoy doing – that way it will not feel like it is another chore or task. Try not to give yourself a deadline – you have too many of those already. Realize you may be the only one that is deriving pleasure from what you do – the person you care for may not have the ability to say “thank you”. Know in your heart of hearts that it was a good meal and that the person you shared the meal with may not be able to demonstrate their feelings. It is not a slight or being impolite – the person just can not participate in the way they used to.
Why Do You Wish the End Was in Sight?
You have a strong moral compass – otherwise you would not be on the journey. You have great stamina, perseverance and fortitude – but you are now exhausted and can not remember a time when you were not. Sleep deprivation, emotional and mental exhaustion have taken over.
Most people wish or pray that someone will get better. They wish or pray that they will live. How do you get to the antithesis of that? There is a powerful survival instinct for those we love [you would run into a burning building for them] – how does that devolve?
You are not an evil person. You are not mean spirited. You did the best you could for a really long time. There is no end in sight. You continue to do everything you can to help and care for someone you love very much. You are tired. You are spent emotionally, physically and yes even spiritually. You have nothing left to give. You may run the gamut of feeling hatred [you ruined my life] to sadness [I am so sorry this terrible thing is happening to you, me, both of us] to anger [how could you do this to me] to the ultimate emotion – the wish – Please Die. You know that the journey still has a long way to go to get to the end. You can envision what the afflicted person can not – there is more treacherous ground to cover before the destination is in sight. It may seem self serving to wish someone would die – but for the person that has meant the most to you – you do not want them to have to navigate that uncharted path either. You already know it will not be easy – you already know that there are many obstacles yet to overcome. You know that “you” are all they have left.
Where Do You Go From Here?
The burden of the journey may seem overwhelming. You are not sure you can make it to the end. But, you will. You know you will. You will reach as deep down as possible to conjure up the stamina and ability to get to the finish line. When you think about it - you really wouldn’t have it any other way. As frustrated and sad as you are from time to time – you will reach down into your very soul to continue to aid that person that has meant so very much to you. That person may no longer “be” that person that you remember – but that’s what memories are all about.
by ML, Florida