Once the dust of the initial shock, guilt and emotional uncertainty of Mum’s diagnosis had settled across the entire family, we entered an almost honeymoon-like period. Mum’s symptoms didn’t appear to be getting worse, our guilt was mostly being kept at bay, and the uncertainty no longer felt quite as uncertain.
During this period, we also found support being offered from various organisations, including Dementia UK’s Admiral Nurses. Despite this introducing several positives, it also brought a new dynamic to the family, particularly for Dad. It was our well-known acquaintance, guilt. Who were these ‘outsiders’ coming in and telling him about his wife’s condition and offering him help?
“Asking me does my wife struggle to wash and dress? Why are they asking if she is still managing to use the bathroom on her own? Don’t they know I can do all of this?”
Help that he had never asked for or needed throughout the more than 60 years of their marriage was now being offered by these strangers who “don’t know me or your ‘Mam’”.
Slowly though, some offers of help were accepted, with adaptations to the family home and a weekly day centre placement having a positive impact.
‘The decision to arrange for a personal assistant for Mum was a pivotal moment’
Despite the resistance to offers of external help, there was still a steady flow of questions from Dad and the family. With the changing roles and responsibilities dementia had introduced, I had become a conduit for these questions to be answered, so having the support of an Admiral Nurse was a lifeline I grasped on to with both hands. Getting answers and directions to further information helped me hugely. I just was not being completely transparent with everyone as to where the answers were coming from!
Over time however, and as with any honeymoon period, ours came to an all so sudden and abrupt end.
Mum’s condition started to progress at an accelerated pace, and subtle cracks started to appear across the entire family, with what were previously considered strong bonds beginning to be regularly tested.
Mum’s signs and symptoms – broken sleep, wandering, the lack of care around her personal appearance, emotional and sometimes violent outbursts, a new ‘industrial’ vocabulary, constantly wanting to leave to ‘go home’, coupled with weight loss caused by a lack of appetite – started to take its toll on Dad. So much so that some of his own health problems began to escalate.
The decision to arrange for a personal assistant for Mum was a pivotal moment. It was a step taken with careful consideration, driven by the desire to provide the best possible support. Having someone to take Mum out for a few hours for a cup of tea, allowing Dad time to watch The Great Escape (for the 20th time), to assist the family with the cleaning, washing, shopping and the increasing number of appointments, was invaluable. Mum, who had always been fiercely independent, navigated this change with both grace and trepidation (and some industrial language!).
However, with time, watching Mum’s cognitive abilities decline was both heartrending and frustrating. Then, one evening, Dad – who can just about use a TV remote control – lifted the phone and called me: “I can’t cope anymore, I need help…”
When the former member of the military, the person you watched stand up to a group of Hells Angels in his own pub, your Dad who you have always looked to when you weren’t sure how to face a challenge, says that to you, then it’s time to act.
It was time for Mum to leave the family home and move into residential care.
The decision was laced with a sense of guilt, as we grappled with the knowledge that we could no longer provide the level of care she needed at home. But as with any move, there are so many forms, steps and questions to be answered, and in this instance, the need for us to move quickly. As we navigated these logistical challenges, the emotional toll was palpable – a mix of grief, guilt and a sense of responsibility.
The move itself was met with a complex array of emotions – relief at the prospect of professional round-the-clock care, coupled with the undeniable ache of separation, and of course the omnipresent guilt. Witnessing Mum’s vulnerability during the move hurt me deeply, and the care home itself became a complex symbol – both a place of support for Mum’s needs and a stark representation of the relentless march of dementia.
Our experiences during this next step along our family’s journey would come to test the resilience needed to navigate the challenges of caregiving as well as the impact of love in the face of difficult decisions.
Andrew Swindells is a carer
Commentary from Amy Pepper (Admiral Nurse)
In this blog Andrew shines a light on the impact on the whole family as they get to grips with the changes in his Mum’s care needs, and the difficult decision to introduce care at home, and eventually to move Mum to residential care.
It is not uncommon for family members, as was the case with Andrew’s Dad, to feel anxious about, or even to refuse, offers of support and help. This can be because of guilt at not providing the care themselves, or the worry that ‘strangers’ will not be able to care as well as family can. It is important that as nurses we recognise the complex emotions at play when help and support is needed, and that we are sensitive when people are unwilling to accept support.
This transition in care is often fraught with mixed emotions, and Andrew captures this poignantly when he describes the “relief” but also the “ache of separation” they felt about the move to a home. This jumble of mixed emotions, often with an overarching feeling of guilt, is something we hear regularly from the families we work with as Admiral Nurses. Andrew demonstrates that this is a time when the family may be most in need of support. As nurses who may come into contact with families during their transition to a care home, we must remain sensitive to their needs, and the needs of the person with dementia, as they navigate this huge change.