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I have a brother with special needs. He has both intellectual and physical disabilities, and has lived in a residential setting since he was in his early teens, but every year he comes to the family home several times for extended holidays.
Our home has been adapted to meet his needs, and as the only other sibling I have always helped to care for him. I have always looked forward to him coming home, and never seen him in any way as a burden. I have been living in an apartment with my fiance for a number of years, and my mother, who is widowed, has cared for my brother during his home stays. She is quite frail and has struggled to provide him with safe care.
It is very important for us as a family to ensure that he is always able to come home, when he needs to or when he wants to. After a lot of deliberation my mother asked if my partner and I would move home to support her.
The house has now been signed over to me, and, in turn, my partner and I made a small investment to build a separate apartment at the back of the house for my mum.
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If we have children (we plan to have at least two) the house will make a great family home: it is large and full of character and in a great location. In any other circumstances we would struggle to buy any property, let alone this great house, which I have lovely memories of.
I have been with my fiance for about seven years, and we have booked our wedding for next spring. He has been a big part of our family and was delighted with the housing situation. He knows my brother and met him at several family occasions, but never stayed in the house while my brother was there and, until now, never had to help care for him.
When our relationship started to become serious I was very clear with him that one day I would be a carer (albeit only during holiday periods), and I explained what that would involve.
Recently, during the global coronavirus outbreak, we decided, along with my mother, to take my brother home temporarily, to reduce his exposure in a congregated setting to the disease. Due to her age my mother had to be cocooned in the adjacent apartment, and I and my fiance, who could no longer leave the house for work, stayed at home to care for my brother. Or at least that was the plan. My partner had a detailed itinerary for each day, consisting of DIY, gardening, watching Netflix and gaming online. Despite being asked, he never once lifted a finger to help me with my brother.
It isn’t always a necessity for my brother to have someone with him, but it is essential during the daytime that there is someone in the vicinity. I have needed to leave the house a few times to buy groceries and to talk to my mother in the garden. Each time I asked my partner to make himself available. He never refused, but when I would return it would be evident that he ignored my request and my brother would appear distressed from being on his own. I have broached this with him in several ways, from gentle to challenging. He tells me not to worry, that it will take time but that he will “row in”, but he hasn’t.
I have made a lifelong promise to my parents and a commitment to my brother. I cannot and do not want to break that. I feel overwhelmed and unsupported.
Trish Murphy writes: You come from a wonderful family where caring for a member who needs help has been done with love and willingness. You have never resented this impact on your life, even as a young person, which shows that you have a resilience and self-discipline that many other people might not have.
It seems that your partner does not have this determination (online gaming during Covid, as an example), and indeed he may feel intimidated by your dedication to your brother.
He may need far more help than he is asking for in order to respond to your brother's care needs. It is encouraging that your partner knows that he has not done enough but says he will improve with time. It might be worth asking what he might do in that time to learn, and what help he might need to learn to be a responsible and compassionate carer. Indeed, he might need to engage with the National Advocacy Service for People with Disabilities, in order to gain knowledge and not just use you as his only informant (email info@advocacy.ie).
One of your big difficulties is that you have now placed care of your brother in opposition to committing to your partner, which means it is a win/lose situation. You have seven years of knowledge of your partner, and in this time you have committed to getting married and spending your life with him. Now is the hard part: how do you positively influence him to be the bigger version of himself?
If you really want to do this, you must first believe he has the capacity. With this faith you will find the right encouragement (both carrot and stick) to create a difference.
If, on the other hand, you continuously measure him as failing to reach your standards, he will feel judged and dismissed, and this will lead to disappointment for you and probably signal the end of the relationship.
You do not have to choose between them: love is big enough to encompass both of your beloveds. Love also stretches you, and now is the time to lean into this and see what kindness, loyalty and conviction can do for you.
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