Avoided and Ignored

I always felt that I got on with C's parents. True, things were a little shaky at first - his mother - M - seemed to think I would be a devout housewife, like she was. His father was clearly unimpressed when we announced my pregnancy with J (less than 3 months after moving in together, and years before we got married). His father - T - gave me a massive red flag even then, without me realising it. We told his parents about it together, at their house. T said nothing. No congratulations or best wishes, but also no words to indicate disapproval either. Instead, he walked out of the room and let his wife do the talking. To her credit, she did share her good wishes and excitement at becoming a grandmother.

This silence continued throughout the pregnancy. T would behave as normal until anything pregnancy or baby related was raised, and he would either stay silent, leave the room, or change the subject. I should have realised even then where C's behaviours were learned from. This family simply couldn't confront to and discuss anything that they were uncomfortable with. Quite the contrast from my own family; we were loud, opinionated, and at any time there was (and is) a conflict between at least 2 siblings. 

Thankfully, when J was born, that all changed. T and M were J's first visitors, and as soon as I wasn't breastfeeding (during which time both found something remarkably interesting about the ceiling), T was mesmerized by J. From that moment, he was a devoted and fun grandfather, and M was a dutiful and generous grandmother. Over the years, we spent a lot of time with his parents, his sister and her family; Saturday evenings eating fish and chips in their dining room, summer evenings having a barbecue in their garden, day trips to the seaside and caravan holidays. I considered them my own family, and I thought they felt the same about me. I became the designated cake maker for birthdays and other celebrations, falling into a role within the family like the ones that everyone else had. 

S (my youngest) was only a few years old when we started to notice some changes in T's behaviour. He was still cheerful and full of life, but he became less willing to help in times of need, and odd incidents kept happening. He would forget directions to places he had driven to hundreds of times. His work colleagues shared concerns about the quality of his work. This became a topic of quite intense discussion with the rest of the family, outside of T's earshot, yet nothing was ever done. It seemed to me that no-one had even asked T about any of these concerns; the subject was avoided and ignored. T was convinced to retire, and C actually hired him to help with his business, knowing he was a very skilled man who didn't like to be inactive. It became very clear very quickly that there was something seriously wrong with him.

When it was evident that despite everyone recognising a problem, nobody was prepared to address it, I decided to take the bull by the horns. I went to see T myself. I told him of our concerns, and he brushed them all off with a wide grin. He was insistent that he was absolutely fine, nothing at all wrong with his memory or his mobility. He even joked about it, which would have been reassuring if I didn't know with absolute certainty that something was wrong. So I stepped up even more. I made him an appointment to see the GP, and I took him myself. I had expected some resistance, but I reminded him that he had already agreed to go (he hadn't), and he didn't question me. 

The GP agreed that there was definite cause for concern, and recommended that he be referred to a specialist. T grinned the whole way through the consultation, clearly oblivious to the severity of the situation. His GP also requested some blood tests, which I offered to take to save having to wait weeks to see the phlebotomist. One was for a fasting glucose, which meant taking it first thing in the morning, before he even got his usual coffee. I arranged to attend on one of the following mornings and he happily let me draw blood from him without complaint. T granted his consent for me to be linked as a contact on his GP records, so that I could make enquiries on his behalf. I ensured the rest of the family were informed at every step. 

When the appointment for the specialist came round, I took him, and M with him too. The doctor performed an extensive assessment on T, and M and I waited patiently for her verdict. Then it came. 

Picks disease. A terminal diagnosis, with progressive dementia and advanced needs. M and I held hands, and we both cried. T, bless him, continued to grin and giggle.

We left, and I called C. I advised him to finish work early, and meet us at his parents' house. I also called his sister and told her the same. When we were all convened in place, I told them what the doctor had told us. It was... indescribable. I gave them their father's death sentence. There were tears, hugging, endless cups of tea and discussions about the next steps. 

Throughout the entire experience, I kept wondering; why am I the one dealing with this?

Sure, I was a nurse so I probably understood the terms a little more. Also, due to shift work, I was more available during office hours. But... I wasn't his blood. I had been in his life for less than a decade. For his sake, surely one of his own 3 children should have been doing all of this? I raised this concern multiple times with C, and he brushed it off. He couldn't take that kind of time off work, he was the main bread-winner for the family, we couldn't afford that. No, it was definitely best that I continue doing this; after all, I only worked part-time. There was definitely some logic to this, so I left it. I didn't begrudge this after all; T was my father-in-law and I loved my extended family. So I continued taking him to various appointments and performing more blood tests. He was re-diagnosed with early onset Alzheimer's; still dementia, but with a predicted longer life span. Eventually, doing all the running around began to take its toll on me - this was on top of work and all my domestic duties. I asked C to take over for his father's sake. He said he would, yet didn't. Finally, I put my foot down and insisted that he take over his father's care. Reluctantly, he did. However, by then - most of that kind of care was done. M was left with the day-to-day struggle of living with a person with dementia. 

I think most people know someone who has had dementia. Providing their care is soul crushing, thankless work. It's lonely, exhausting, frustrating, and comes with very little reward. Imagine caring for a toddler that can actually operate and overcome any baby-proofing equipment you install in the house, car and garden. One that can reach the tall cupboards without having to drag a chair and climb, can't be picked up if they fall over, and knows how to get to the power tools. No adult conversation, no toddler seats in the supermarket trolleys, no help with the general household management tasks that you had never had to do before. I was so worried for M and the emotional and physical strain this must be putting on her. When I could, I would go over for a few hours and let M have a break. 

T passed away a few months after C and I separated last year. I was devastated. I decided to put aside all the squabbles and anger, and just support the family They were grieving, it didn't matter that I hated their son/brother. I even offered him my support, and helped M and my ex-sister-in-law with funeral plans. The funeral was heart breaking, complicated by COVID-19 restrictions. C had made it clear that he didn't think the kids should take up 2 of the limited slots to attend, but they wanted to go and M had agreed. In the end, S chose not to go, but J and I did. The family were welcoming and friendly, but with an icy veneer. It was barely perceptible, but nonetheless, I felt the discomfort of it. I stayed for a while to show my support and let J see the family, then we left.

Soon after T's funeral, the whole family turned their back on me. I'll follow up on the why in another entry, but needless to say, it felt like they had forgotten all I had done for T and M. The family avoided and ignored me, cast me aside as I had seen happen to another ex family member. I had thought I would be exempt from that because of my intense involvement with the family, and the ongoing connection that was my children. They've been openly hostile at times, and clearly believe the party line touted by C; that I'm keeping his children from him and them, and I'm only driven by jealousy of his new partner (ahem... lol) and bitterness. I'm relieved that T died without being exposed to any of this conflict, although I know how he would have avoided and ignored it anyway. Rest in peace, T. You may not have communicated in the healthiest way, but you were a good man and you were loved by many. Myself included.