The caregiver needs care too - Blog 14

 Highlighting the importance of mutual care and support.

The caregiver needs to be Prioritised too….

In the journey of caregiving, we often forget that caregivers need care too.

Our Story, of My Husbands continued Love and Sacrifice!

Living with Muscular dystrophy has brought countless challenges into my life, but thankfully one of my greatest blessings in my life has been my husband, who is not just my partner, best friend, but he also lends himself to the role of being my caregiver. It is a role he has taken on and one he is fully committed to, and honestly only for him I do question where I would be today?

When PJ and I first met I was merely existing in a world where I felt that I did not fit in. All my friends were moving on with their lives getting married and starting families and I was just lost. I did not even like myself at the time so I never imagined meeting anyone and falling in love with somebody who would love me back unconditionally especially with all my medical baggage. The years prior to meeting PJ I had been hit with one disaster after another. My muscular dystrophy diagnosis to being in car accidents to finding out I could not have kids so as you can imagine I had a lot going on in my head while also trying to deal with my physical health. If I am honest, I never really dealt with any of it properly and sadly no one fully noticed that I was indeed struggling. I hid under a veil of pretence and sarcasm for so long, that I had fooled everyone even myself that I was ok, but the harsh reality is I was lost and when I least expected it along came my big knight in shining armour, and he rescued me.

 So, my husband, what can I say really, as nothing I can put on paper will ever truly express the amount of love and gratitude I have for this man. I know I am his number one priority and everything he does is for me. I know the sacrifices he makes on a regular basis not only as my husband, my best friend but him as a person and I want to use this platform to openly acknowledge this.

I know the care and love he gives me is a testament to his love and devotion to me. Sometimes is not about the big stuff It is the simple things he does. The way he anticipates my needs before I even voice them. I especially laugh when he asks me if I have had my toddler nap today as I am one cranky little demon if I am exhausted. I am known to be a different beast when I am tired or in pain, as my body shuts down and I know all too well I am intolerable and the only thing that helps is sleep and complete rest. I go from being small and sweet and all smiles and transform into a gremlin. I also must acknowledge that on several occasions how he pushes through his own exhaustion to make sure I am ok and comfortable. But behind that love and devotion of a loving caring husband is the sacrifices that often go unnoticed. So many missed events or parties and golf holidays as I cannot be left on my own for a prolonged period or sometimes places are just not accessible for me, so we must decline special invites. Nothing within reason is spontaneous anymore as we need to know if it will work for me. So, for me this is the hardest pill of my illness to swallow, the loss of my independence and mobility as its not only me that it affects it is the whole dynamics of our relationship. I know all too well the reason he says no to numerous invitations is because of me.

I know he puts parts of his life on hold, like his love for travelling, social outings, and even his personal dreams – so that he can be there for me. I can only imagine the emotional toll is immense for him, as watching someone you love having to live with a progressive irredeemable disease is heartbreaking. He carries not only the weight of being my partner in life but also my caregiver, but he also must juggle managing his own feelings of helplessness and grief while consoling me and helping me deal with mine. PJ also has the added financial burden to the long list of duties as me being disabled in this world is not cheap as all the modifications to our home and mobility equipment, I will need in the future comes at a massive cost.

Even with all the love in the world we have for one another there also is an ugly side to caregiving that no one prepares you for. It is not just the strain on the caregiver but the strain on the relationship. Being dependant on someone for even the smallest of tasks can lead to feelings of guilt and frustration for me, and sometimes resentment from him even though I know he would never admit it. Never once has he made me feel like a burden, but I am fully aware looking after and caring for me is a full-time gig that is only going to get worse as my disease progresses. The word burden is never spoken aloud in our house as it is not in PJs vocabulary, but I know it exists and I know all too well what it means.

Also, this is a strange one and the unspoken truth is that there is a stigma that people do not talk about when you are part of a couple and one of you is sick. People do not see my husband as a man who is my loving partner they feel like they need to pigeonhole him into one of two categories either as a “hero” or worse “pity him” for the life he is chosen to live with me. If I am honest this is soul destroying for me as his so much more than my hero and at the same time, he nor I want pity. Empathy yes of course that is welcomed but pity no. We took our wedding vows for better and worse in sickness and health and to love and to cherish one another seriously back in 2019 and we meant them. Plus, we already faced my cancer journey together before my nasty Muscular Dystrophy started to progress the way it has over the last 5 years.

Despite the good bad and the ugly though there is an immense joy and beauty in the life we have built together. Our relationship has been tested in ways most couples could never comprehend, but it has also shown us the depths of our love and resilience and sheer devotion we have for one another. Look I am not going to bullshit you, our journey certainly has not been without its problems, but life is not easy, and all relationships need constant work and communication and ours is no different. The only thing now is I cannot storm off anywhere in a huff, but you can bet your arse I will still try slam a door like the best of them. But all jokes aside I do worry about PJ and the stress of him being all and everything to me has on him as a person.

In recent years I have always wondered is why people never ask PJ how he is doing? The thing is everyone always asks him how’s Siobhan. I do not know if people just do not think to ask him or is it that people in general just do not talk openly about stuff like that with men. In all honesty I know there is nights out when all he wants to do is shout – what about me, why not ask me how the fuck I am doing?

I can scream shout cry and feel sorry for myself, and no one would bat an eyelid, but PJ is expected to stand tall and not crumble. I am very vocal about my journey and allowing people in so they can see the harsh reality of what it is like to live with a rare disease, whereas PJ is a typical strong headed Irishman that does not talk about his feelings. This is something I am currently trying to work on, but it is a work in progress as it cannot be rushed it certainly also is not a quick fix. I am also aware it is something he just needs to do in his own time. All I can do for now is just encourage open dialogue and try navigating him down this road at his own pace, and allow him when he is ready to talk about his feelings and not run away and try to hide from them he needs to own them.

So, this is for all the caregivers out there, you are seen, your sacrifices, struggles and moments of doubt do not make you any less credible. It is okay to ask for help, to take a break, and to acknowledge the toll caregiving takes on you. As we hear all the time in social media it Is ok not to be ok, and that is something caregivers sometimes do not want to admit that they do struggle especially the ones where the lines are blurred between partner and caregiver.

So finally, to my husband, simply Thank you. For your patience, kindness, strength, love and devotion. I know all too well this is not an easy journey for us, but just know with you by my side, I feel stronger than I ever thought possible. I now know the true meaning of a good partner is one where they do not just try to fix one anothers problems that as a partnership you stand united by one anothers side and face them together.

 PJ, you are my big Teddy bear who gives the best hugs and there is no better feeling than being wrapped up in the safety of your loving arms.

 From the bottom of my heart, I appreciate all that you do for me and thank you.

Not all superheroes wear capes, mine wears a Donegal supporter jersey.

(but hey no body is perfect right)

Until Next Time,

A proud Mrs McBarron xoxo