Dave and Doreen: Our dementia journey with mum Dave and Doreen Butler are the son and daughter-in-law of Patricia Butler, who lives on our Haviland House care home’s Elmer household. They were brave and kind enough to each share their viewpoint of the dementia journey that they have been on with their mum. Dave’s viewpoint With the benefit of 20:20 hindsight our dementia journey with mum started a long while back, even before dad passed away nearly seven years ago. But it was a very slow start to the journey, the odd repeated story, the missed household chore and hobbies no longer done (mum was an avid knitter, gardener and more). Fast forward to 2020 and the pandemic. The previous year mum had gradually stopped making food for herself, so meals on wheels were arranged daily. We noticed mum was neglecting her meals and starting to neglect other aspects of daily life. Just as the pandemic took hold in March and following a medical incident at home, we agreed with the GP that mum needed significantly more in-home care. We were delighted that Guild Care were able to provide twice daily visits to help mum get up and go to bed and with personal care and meals too. However, another milestone on our journey was reached in September when mum had another incident and it became clear that being at home without 24/7 care available was no longer viable. Again, and by good fortune, Guid Care were there to help us and a room in Haviland House was available and mum was able to move in and join a household within a couple of days. This is where mum’s and our journey became a little surreal. The pandemic required mum to quarantine on arrival. And the guidance limited visiting to all care homes. After quarantine and once guidance allowed, mum was able to see just one visitor (who had to be nominated and fixed). I was delighted to be able to visit mum for the first time around a month after mum joined the household in Haviland. Meeting an elderly relative, who has dementia, during a pandemic is a strange experience. It was great to see mum, it was great to have those conversations, albeit over and over. What was strange was doing so wearing PPE – mask, apron and gloves. I am guessing dear mum wondered who I was, although a quick lowering of the mask may have given her a clue. I was fortunate to have been able to visit mum monthly leading up to Christmas (recognising visiting slots had to be rationed due to the pandemic). But the post-Christmas lockdown stopped all visits and as rules were relaxed in the spring we took the opportunity to appoint one of my sisters as the nominated visitor (as due to pandemic incidents my sister had not been able to visit previously). We had been able to speak on the phone and Facetime mum during this period, which was a comfort. As spring progressed, the rules changed again allowing two nominated visitors and the introduction of a visitor pod gave me the opportunity to visit mum with my wife. Pods take visiting to another level of surreal, full PPE, as before meeting with a screen of Perspex between us. It was however lovely to see mum, although she (understandably) was perplexed by the screen. But it was so good to be there with my wife and talk with mum face to masked face. Sadly, the dementia journey for mum has taken her memories of many things, even the day to day. We know, from photos and video sent to us, that mum had a lovely birthday, and has been enjoying joining in with craft sessions and household events like songs of praise. When asked about these, mum cannot recall anything, but we take great comfort from knowing that mum is in a wonderful place, is being cared for 24/7 and watching mum interact with the staff reinforces our knowledge that mum is in a good place. It is indeed a comfort to see mum face to face, I am not sure the PPE helps mum at the moment, but look forward to further rule relaxations when, hopefully, we can see each other genuinely face to face – and perhaps soon a long missed hug might be shared too. In the meantime, I have absolute confidence that the team at Haviland and the household staff are caring for mum on so many levels and enriching her life (even if the enrichment is soon lost to Dementia). Doreen’s viewpoint As mum’s daughter-in-law for over 45 years I feel able to say that mum is a very special second mum to me, as my own beautiful mum passed away nearly 20 years ago. But maybe because I had some working background in nursing and rest home care, and I watched my own grandma who we lived with when I was a teenager declining with Alzheimer’s, I recognised early on that this was not just general absent mindedness for mum, and so maybe had some conversations with my husband and his sisters that they were unable to face. No child wants to accept that their parent may not recover what is being lost, or that they cannot provide all the things mum needed. When the absent mindedness turned to absolute self-neglect it was very distressing for everyone, and Dave and I had then retired and spent increasing time, and days, trying to find solutions to make sure mum would always be safe. The sad thing for us was that we could no longer just visit mum as we had to unravel so much every time we were there. But things progressed rapidly at the end of her time at home, and not only because of the pandemic that was raging through the world. It was with heavy hearts all her family recognised more care was needed and we count our blessings every day that Haviland was able to offer the amazing love and care that you do. As a daughter in law I felt guilt I suppose, and responsibility, as in the end it was Dave and I who brought mum to this lovely house, finally all of us admitting that we could not give mum the undivided care she needed. And then the world locked down again. I don’t think it is possible to imagine how sad this made us as nobody could actually do what we wanted, which was to visit, hug, hold hands and have a cuppa with her. Plastic and PPE aside, I can only say it was lovely for me to see mum again, and I will joyfully repeat every conversation with her just to spend some time with her. And in my heart, I am trusting that one day soon we will all be able to do those contact things with mum again. You have to be an honest person to recognise that not everyone can see the potential sad outcome if mum had not been so lucky, and that not everyone wants to agree with what your instinct and heart is telling you. Simply put I suppose, Dave nor I could offer the constant, professional, round the clock care that mum deserves and that you all give with such dedication, care and love.