Who Cares About the Carer?

We either know someone, or we ARE someone, who cares for a partner or family member who has been diagnosed with a medical condition, the symptoms of which, prevent them from taking care of themselves as safely or as efficiently as they once could.

I am one of those carers and I’m sitting here at my desk, thinking about the people I know who are caring for their partner or a family member and who are always answering the questions “How is *insert appropriate name here*?”

Rarely do they ask “How are you?” or “How are you coping?” or “Do you need any help?” or “Would you like to talk about it?”

It’s almost always about the person who was diagnosed with the condition.

Of course, it SHOULD be about them, and I can only imagine what it’s like to have a debilitating condition that will never get better. I only know what it’s like as the partner of someone experiencing this.

So here are ‘my’ thoughts and how ‘I’ feel about living with, caring for and loving someone who has been diagnosed with Parkinson’s Disease.

My husband and I have only been together for 14 years, which is a relatively short period of time in the lives of two people rapidly approaching 60 years of age. We were married in 2010, the day after my 50th birthday and the happiness that I felt on that day was pure and overwhelming and perfect. Tears of happiness well in my eyes whenever I think about it or talk about it.

With hindsight, it was also the day when I knew with certainty that my husband’s health was not as it should be.

We were married in our local park on the waterfront, and chose to walk down the aisle towards our Celebrant together, hand in hand, to the sound of “Ain’t No Mountain High Enough” and with 50 of our friends and family in attendance.

     

Adoring Husband was incredibly nervous and as we held hands tightly, I felt the tremor, but as I squeezed it to reassure him that everything was ok, the tremor strengthened and did not abate for the entire service. It was crazy out of control – much worse than a nervous tremble.

In the years prior to this, he had twice been to Doctors to question his, at first, slight tremor. The first time was not long after shoulder surgery and the Dr suggested that it was a pinched nerve from the surgery and it would correct itself. The second time, a year or two later, a different Dr suggested that it was an ‘Essential Tremor’ and that he should learn to live with it.

The third time, in 2012 we were referred to a Neurologist for further tests and possible diagnosis of Parkinson’s Disease. There is no blood test for Parkinson’s – there are physical tests and checks that the Dr can do, as well as requesting a PET Scan to rule out something more sinister.

On the 15th January 2013, the Neurologist confirmed that Adoring Husband had Parkinson’s Disease.

We barely had time to digest this information, when 12 days later, our town was hit by a tornado, courtesy of Cyclone Oswald and our house happened to be in the firing line. In total $140,000 worth of damage and 6 months of our lives filled with repairs on our camper van and car, construction on our house, fights with the insurance company and both of us coping with PTSD.

     

Anyway, I digress, let’s get back to the diagnosis.

The Neurologist, who did not know me from a bar of soap, took one look at me and said “There is nothing you can do for this disease. Changing your diet will not help, so don’t even bother trying that. There are no natural treatments, no cure and no way to treat this disease except for a very few medications, which we will trial to see which works best.”

That was the moment when I knew he was not the Dr for us. He was an arrogant, closed minded man who did not deserve our respect, our money or our time. It was my mission to find a better alternative.

By the end of that year, when life was almost back to normal, Adoring Husband began to experience symptoms that his Dr diagnosed as UTI (urinary tract infection), so he was given antibiotics. He said that this kind of thing was common in Parkinson’s patients. Two more times in the coming months, AH was given antibiotics for the same reason, until l spoke up and said “NO! You need to do some tests. This is not right!”

In August 2014, Adoring Husband was diagnosed with Bladder Cancer and had a low grade malignant tumour removed from the opening of his bladder.

This was when I decided to change our diet and lifestyle. That was the moment I became a voracious researcher into everything Cancer related and Parkinson’s related. Adoring Husband was coming along for the ride whether he wanted to or not.

The truth of the matter was that this was the final straw (I will leave other stories which helped lead me to this decision, for other posts) which took away my faith and trust in Doctors and I knew without a doubt that we had to take our health and wellbeing into our own hands, educate ourselves and make our own changes to become the healthiest version of ourselves possible.

I can’t even describe how stressful this time was for me. I felt the weight of the world on my shoulders and I became obsessed with diet, nutrition and health in a big way. Firstly, after much thought and research, I decided to follow the Paleo lifestyle.

Adoring Husband said “I will completely support you while you make these changes for yourself darling, but please don’t expect me to change my eating habits.”

I agreed, but considering that I was the one in charge of meals, he really had no choice but to eat the same way!

He was overweight and the combination of medication and poor diet left him asleep on the couch for most of the day. He had become depressed and the side effects of the medication were playing havoc with his health. He was constipated (from the meds), had high blood pressure, was diagnosed with GERD and given other medication for that, was sleeping poorly and his tremor left his body and muscles sore, tired and cramping up.

He refused to research his condition for fear of what he would discover and his imagination created a future that put the fear of god into him.

Meanwhile, I was in denial.

If it was the last thing I did, I was going to reverse this condition, or at the very least, stop it in it’s tracks.

The first thing on my agenda was to fix the other conditions (weight, blood pressure, GERD, depression and constipation), and I knew that diet was the first step towards reaching that goal. Through Paleo eating, he lost the weight inside 6 months (17kgs) and this in turn brought his blood pressure under control. I believe that it was a combination of weight loss AND removing certain foods from his diet i.e. gluten, dairy and sugar which contributed to this turn around.

We introduced bone broths, fermented foods (kimchi, kombucha, apple cider vinegar and kefir) into our diets, because I knew that gut health was important for good physical health. Adoring Husband refuses to eat yoghurts or drink kefir, so I added small amounts to his juices and smoothies without him knowing (I guess he knows now lol).

For sweet treats, I made energy balls, cakes and muffins that were gluten free, dairy free and sugar free but had to be delicious because Adoring Husband was fussy! At the beginning we had these sweets often, but over time, once his sugar cravings subsided, we had them less often.

His GERD disappeared completely without him taking any medication (because I threw away the prescription) and his energy levels increased considerably – he was able to fulfil his role within the SES much more effectively and efficiently – all of his conditions, except the Parkinson’s Disease, were cured!

I began studying Nutritional Medicine to help me understand the human body and how it works.

In the midst of all these changes, when Adoring Husband was still not quite convinced of my plan, he was still recovering from the bladder cancer surgery and one of our dogs became seriously ill with pancreatitis, it all became too much for me and I had a mini meltdown. AH had left the house after a minor argument and I picked up a skillet and went to town smashing the ceramic cooktop to pieces. I yelled and screamed and sobbed and cursed and completely fell apart.

Later, as he pulled in the driveway, I hopped on my trike and rode into the night. I pedalled around our quiet little town sobbing my heart out for an hour in the darkness.

By the time I returned home, he had discovered the damage and was horrified and distraught that I could become so upset!

He wrapped his arms around me and I cried into his chest that this was the only way I knew how to help. I loved him, I didn’t want to lose him, that this was my small way of trying to fix things and I believed that it would help him if he would just try my ideas.

I think the shock of seeing me in such an emotional state, when I’m normally so in control and UN-emotional, convinced him that it was worth trying and he said “I’ll do whatever it takes.”

It has been four and a half years since his diagnosis and from my viewpoint, his symptoms have stabilised. There are times when his tremor is more pronounced i.e. when he is stressed, when he is tired, when he eats gluten and when he hasn’t had enough water during the day. He is so good right now, that when he had his yearly visit with the Parkinson’s professor last month, the professor said “What are you doing here? You look great. You don’t need to be here!”

AH’s fine motor skills fluctuate from day to day. On his bad days, he needs help to pull shirts over his head, or do up buttons or belts. Some days he can’t use a knife and fork properly. Sometimes he needs massages on his neck and shoulders to reduce the pain and tension from the tremor. We’ve both adapted pretty well to the changes as they happen and AH is finding it easier to communicate his needs.

Most of the time, I’m ok. I’m proud of what we’ve done and how well we’ve managed such a hideous condition. I feel somewhat in control of our health and aside from the PD, Adoring Husband is probably the healthiest he has ever been in his life. Me too for that matter.

Emotionally, I have my good days and my bad days. I was in denial for so long that the build up of stress and tension inside of me was ripe for either an implosion or explosion. In February this year I attended a couple of ‘Journey’ workshops which allowed me to clear old issues as well as new ones. The tears that flowed and the issues and beliefs that I released created a whole new ‘self’ for me. I felt a deep emotional healing which built some fresh new inner strength that I needed.

If you ever have the chance to attend a Brandon Bays ‘Journey’ workshop, I can’t recommend it highly enough. I was terrified before the first workshop because I don’t like to share or show my emotions – but here, I felt completely safe to do so and I felt like a completely new person at the end. Lighter, freer and more open. It was fabulous.

It’s still much easier for me to NOT think about what may happen in the future. Some might say that it’s better to be prepared and know how our future could end up, but I would rather create our own future – a positive one – we don’t have to follow the same path as every other Parkinson’s family. We play by our own rules and will create a happier, stronger and more distant future than the medical establishment want to give us. We do that by being our own health care advocates and doing everything in our power to be strong, healthy and educated about how amazing the human body’s ability is to heal itself given the resources to do so.

I feel incredibly determined.

I have lived away from home and family since I was 17 yrs of age. While I had the nearby support of my first husband’s family for 2 years of our 8 year marriage, after we separated, I lived without family support for the remainder of my adult life. I lived 2000kms from my parents and siblings. I rarely included them in the goings on of my life and our communication was limited – maybe monthly phone calls, if that. I had a few friends, but only one who I could call on in a real emergency and luckily there were few emergencies in my life that required outside assistance. The male partners in my life were more of a hindrance than a help and I always felt like they were there for the good times only.

The reason I tell you about this part of my life, is to explain that I don’t ask for help. I don’t share my feeling. My primary focus is managing life and it’s ups and downs on my own. It takes everything that I have in my emotional basket to do this. This is where I could go off on a tangent of emotional analysis, bringing along my family for the ride, but my point is that nobody ever knows what is going on in my life, in my head or in my heart because I just don’t share it. The extent of my sharing comes in the form of humour and sarcasm.

What I know and what I can say out loud right here and right now, about being a carer for my Adoring Husband, is that I love him. I get so caught up in all the day to day stuff and all the extra things that I’ve brought into my life, that I forget how much I love him.

I forget that he is everything that I had ever hoped for in a life partner.

I forget that his heart is big and golden and mine.

I forget that he loves and respects me and would do anything for me.

I forget that he accepts me and all of my faults and my demands and my strangeness unconditionally.

I forget that he gives me the space to spread my wings and try anything that my imagination wants to obsess about at any given moment of any given day.

I forget that when life throws tragedies, disasters and emergencies at us, he jumps up to the plate and takes charge, easing the burden and the stress for the rest of us.

I forget that he has been the rock that helped us design this wonderful life that we live, in this wonderful place we call home.

I forget how lucky I am to have found him.

I forget how courageous and strong he is in dealing with what life has dealt him.

I forget all of this because I’m so focussed on keeping him around for as long as possible. I’m so focussed on looking for new ideas, new directions, new paths, new discoveries. I’m so focussed on not only creating a healthful future, but creating this business that will assist in our financial future as well.

I forget that while I’m so focussed on creating a future, I forget what’s most important about the present … letting him know that I love him.

Having said that … it is equally important for me to love myself. Self love and self care – the things that nobody wants to believe in or admit to. How I feel and what I want is important and allowing myself the time for some self care, is vital for my sanity, my health and my wellbeing.

It’s easy to get lost in the caring responsibilities and duties. It’s difficult to find a balance. Sometimes it seesaws too much in the self-care direction and sometimes it seesaws too much in the caring direction. Sometimes I feel resentful because I have to forego some self care and sometimes I feel selfish or guilty for taking time for myself. But they are my issues that I carry from a past life. Sometimes I worry about so many different things that I block it all out by filling my time with trivial unimportant things … like Facebook or mindless TV or just silence in an empty room.

So there you go.

I’m a carer. I care too deeply. I don’t care enough. I don’t share. I don’t ask for help. I wish for a long and happy future with my husband. Today, it’s all about ME.