So, its carers week 2021. In June 2019 I wrote about the journey of my wife Karen diagnosed with early onset Alzheimer and myself as a carer. We were then more than 2 years since the confirmed diagnosis early in 2017 and I had stopped working at the end of December 2018 to spend more time supporting Karen and dealing with the fallout of this dreadful illness.
So here we are 2 more years on. Who would have predicted just what was going to hit us in the form of a Covid pandemic which we are still grappling with at this time.
The period from Jun 2019 to March 2020 was very much what we would call the pre-covid period. All the supported groups and activities that Karen was able to attend and enjoy on a face to face and very social basis continued. The ADSS Early Onset group, Kindred Spirits, continued to grow in strength. The away day activities organised for members with diagnosis were the participants and, for the carers, provided valuable and precious time periods away from their charges to do what they wanted to do. Karen enjoyed other ADSS organised activity-based sessions open to both persons with diagnosis and their carers/partners, labelled as ABAM (Active Bodies, Active minds). This included yoga, dancing, boxfit, and table tennis.
I along with other carers attended most of the sessions to help ensure our partners were able to get as much as possible from the sessions. But we also had some fun ourselves on the way. All the time this was good and important social contact with a useful variety of skills required, mixed with humour, as well as obligatory tea and coffee not to mention healthy smoothies and fruit at the end of the sessions.
Karen particularly enjoyed being a regular member of the ‘Singing for the memories’ group. This has been invaluable to her. On Monday afternoons I would drop her off and pick her up at the end. She loved being with the others, helping serve teas and coffees and just being there with familiar friends, singing and having fun. The group also sang at the 2019 Christmas concert and other invited events.
Attendance at memory cafes at Meopham and Gravesend continued. Initially Karen would take herself to these groups but then we saw changes. Karen started to lose sense of direction. She left the house one day to walk to Meopham Church rooms and then I had a phone call from her to say she was lost. I had to go out and look for her and found her very confused at a junction just a few hundred yards from the house. Karen used to be able to drive to Parrock Street car park and find her way to the group meeting at the Woodville centre. When this group changed to the St Georges church rooms, she was unable to learn new directions from the car park through the town. And to try to learn a new car route to a different car park by herself was impossible. On both counts it changed the support need to be accompanied to and picked up from the venue. The need for my time changed.
Karen did not actually give up driving completely until September 2019. In truth she drove little after I stopped working at the end of 2018 as whenever we went to places together, I would drive. But she would drive herself to her hairdressers at Istead Rise, or Parrock Street car park to go to the memory café or to Safeharbour. But then we had instances where Karen got lost when driving. And I had to rescue her. She also went out one day to go to the local garden centre she used to go to regularly only to arrive back at the house an hour later because she could not find her way. We should have questioned letting Karen driving on after getting lost more than once. However, this was an important point of independence. It had to be accepted by Karen. I had to take the step of going in the car with Karen and letting her drive while assessing how she was driving with minimum input from me. There were clearly problems with how she drove including use of controls, observation, and potential for accidents. And at the end of the session Karen was unable to manoeuvre the car correctly to park it at the house. I had to swap places and complete the movement. Karen agreed that she would not be driving any more for both her own safety and the safety of others. I was so pleased that she made that decision in her own mind. From that point on I would be the driver of the house. It was a sad moment really. Karen used to be a good driver and drove to many places by herself or taking our girls here, there, and everywhere. She would drive to her mums in Wales without qualms. And now the development of her Alzheimer condition had taken this away from her. Her beloved Jazz had to be sold. And my driver duties increased.
We continued to have an active dancing life through this period with our latin and ballroom dancing. However, it was becoming clear that it was no longer sensible to continue with competition dancing and we danced our last competition at the NATD national championships at the Blackpool Tower in July 2019. What a lovely venue to mark this event, but another sad moment. Knowing that Alzheimer condition would prevent improvement and progression in something we loved. But we continued to follow an active dance life: Individual lessons, class lessons, social practice groups, dance weekends and taking dance exams in 2019. We were also going to regular tea dances. It is more difficult to learn and remember now but our philosophy remains to keep doing it while we still enjoy doing it. On a personal front I would really love to progress further in dance, but I realise that I must temper my ambition and to be aware of Karen’s needs and limits while being sure that she is enjoying the moments and the taking part without pushing or argument.
Karen reached her 60th birthday in September 2019 and we were able to have a good village hall celebration with family and friends. Karen enjoyed herself but it was clear that even then her recall memory was worsening.
We got through the trauma of a new kitchen and bathroom installation in August to September 2019 which only just got completed to use for Karen’s Birthday. Fortunately, Karen and I were able to stay at my daughter’s house in Meopham which made it easier but there was a fair amount of confusion for Karen through this period. But I was glad that we did this then and not later.
We managed to get a holiday in France in October 2019 staying with friends at their house in Quillan. We were able to negotiate the flying and travel without major difficulty and have a thoroughly enjoyable holiday together. This was the last holiday abroad we have had.
In Nov 19 Karen was nominated by ADSS for the Kent Volunteering awards for the assistance she gave in groups and for presenting her profile several times to volunteers and trustees. She won awards for both the top Health and Caring Volunteer in Dartford and Gravesham and the Overall Health and Caring Award for Kent. This was great for her and made me proud. This is tempered by the knowledge that Karen now has no real recall of that. But we have the certificates and the photos for the memory.
Move forward to 2020 and here comes the impact of Covid with the first lockdown in March. At a stroke all the activities and social activities proving so good for Karen were shut down. What a difference.
What was going to happen?
My younger daughter Sarah was still at home and ended up working from home through this pandemic. Our home became her office which was not ideal. We had to ensure that we were not disturbing her frequent and long online work.
We started doing more walking. We found ourselves to be so lucky that we lived in an area of beautiful countryside and good walks. We tried to walk out most days which was helped by good weather. Best of all Karen enjoyed and still enjoys getting out for the regular walks. Getting close to nature and outdoors has been a big positive in one respect.
We had to take on board zoom and on-line conferencing. I was there to be able to ensure Karen could be on board. She would not be able to do it without help. She used to use computers at work and home but that is a skill now long disappeared and is unable to take new learning on board. Probably the most important zoom which has been used is Singing for the Memories. It does not replace the full face to face social contact, but it has kept core members of the group together. We also joined a Saturday singing session with the Kent Virtual Choir which has proved to be popular and enjoyable. We were pleased that ADSS started holding groups on zoom including kindred spirits and memory café groups. We even joined in ADSS induction days on zoom and Karen was able to present her profile. We also joined various family and friends zooms. Common activities on zoom included bingo, quizzes, and just general conversation. We missed the dancing. Karen missed being there in face-to-face groups and doing activities. She struggles with a quiz. Karen and I joined Boxing 4 Dementia sessions on zoom. It was different but provided a fun exercise session rather than just conversation.
In April, my father died of old age at 92 after going rapidly going downhill leaving my mother of 91 at her home on the Cotswolds. I ended up spending 3 weeks with my mother from his death to his cremation. I was so fortunate that my daughter took on the caring and support role for Karen at home while I was supporting my Mum at her home. This was a difficult time for me of not being there for Karen while providing the care and support for Mum. Ever since then my mother has been and is needing ever more support. This is not helped by her dementia and short-term memory worsening. It is sobering that my mothers long term recall at 92 is miles better than Karen’s at 61 and her short-term memory while getting worse is still better than Karen’s. Such is the issue of early onset Alzheimer!
When lockdown eased in July we were pleased. We were able to start individual dance lessons which moved to limited group classes. We struggled with remembering but steps and moves were coming back. We had some outdoor group meetings and picnics. Singing still had to stay on zoom. Haircuts happened, what a relief. Some indoor sessions were started up by ADSS. We visited Kew gardens, we went to the cinema, we went to a lunchtime classical concert, we met friends outside.
Then lockdown came again. Lessons, classes, and meetings stopped again. Zoom remained the primary contact medium. We joined Zest group sessions on zoom run by Lisa and Miriam from Brightshadow which proved to be very entertaining and involving, with a different approach to other group zooms.
Come April 2020 and outside hospitality opened. We were able to have a wedding anniversary meal outside at the local restaurant. Karen, myself, and our daughters were able to have an afternoon tea together.
Karen and I have had both our vaccinations, so we are pleased with that and gives more confidence.
In the middle of all of this our youngest daughter purchased her first house. She received the keys and moved in at the end of October. This brought another dimension to our life. Sarah was no longer in our house but was also needing support to get established. We regained the full freedom of use of our own house. But we also had to manage the impact on Karen of the new arrangements,
Dance lessons have once again restarted for us. Groups are now meeting again inside with increased numbers. The future looks more hopeful, but it still feels there is a long way to go before we can get back to the full social contacts and activities that there were before the first lockdown.
Karen has recently started attending ADSS Beacon day centre activity sessions once a week. She enjoys being there but can never recall what she has done on that day. It is a valuable time for me.
Karen’s condition has worsened over the last 2 years and reflecting on Covid my feeling is that the increased social isolation has been a significant factor in accelerating this over the last year. She requires more help and support in everyday tasks. She no longer reads as she used to. She becomes disorientated easily and has difficulties in understanding information and instructions. Both her short and long term memory have worsened.
Looking to the future our crystal ball is hazy. We are looking forward to less restrictions and getting more variety back to our life. Getting back into more activities and social groups will be important for Karen. We want to see more shows. We need more breaks and moments to provide different experiences. We do not know how and when Karen’s condition will change. We will continue to work with ADSS and their help on our journey.
I must keep on reminding myself the importance of being able to enjoy the here and now moments. I love to hear Karen laugh and see her smile. That is when I know it is working.