Christine has been joining our Mobilise Cuppas. She has been caring for her husband with Alzheimer's for around 12 years although there were symptoms 15 years ago. This is his 6th year in full time care and he is now in the later stages of the disease during in lockdown. So I asked her to share her story - it is full of hope even in difficult times.
Gordon served in the Royal Navy for 38 years completing his service as an Air Engineering Lt Commander. We met in Malta where I was serving in the WRNS. We married in 1964 and have two married daughters. One daughter is 50 with one Grandson who is nine, and our second daughter is 52 with three Grandchildren, twin boys of nine and an 11 year old Granddaughter.
Gordon’s Mother died when he was 10 and his Father died of Alzheimer’s when he was 59 so Gordon always felt he wouldn’t make 60. It was a huge bonus when he celebrated his 60th birthday! He was 80 last year and is still going strong for someone who has lived with this dreadful disease for such a long time.
In the early days with Alzheimer’s, life was challenging to say the least. We never argued so much as we did in those first few years! I often thought I would explode with anger and frustration but it was nothing like the anger and frustration that he must have been feeling. As soon as I accepted that this wasn’t his fault and he had little or no realisation he was behaving any differently – I was able to become a kinder carer to him and kinder to myself.
I was extremely lucky with the help I received from our local NHS Memory Service, Carers Groups, Social Workers, CPNs (Community Psychiatric Nurse) and Gordon’s GP. All these professionals had a wealth of knowledge to impart so I listened and learnt how to approach the situations we encountered. Something I decided myself was to write a letter, to which ever Health Professional we were seeing, stating Gordon’s deterioration since our last visit. I was determined I didn’t want to talk about him, in front of him, I wanted to maintain his dignity and his self worth, both of which were at rock bottom. The Doctors/Specialists were very grateful for these letters as they said “You are our eyes and ears” and it helped them to offer better informed advice.
We joined several groups for the Cared for and Carers, which kept us busy most weeks. These took all forms, but 'Singing for Memory' was our favourite and I still go to this day as a Volunteer. I also valued a Peer Support group where the cared for were kept occupied in one room and we were able to be ‘ourselves’ in another and discuss all our fears, ask advice etc and of course Carers Hub which is run on a similar basis and which I still attend. Monthly speakers, advice, fun, tears and sharing all our experiences through this journey of obstacles.
Within all these groups we bonded together and became firm friends. After the death of one of our friend’s husbands I decided it would be sad if we didn’t see the widow at our groups so I suggested we meet for coffee once a month. We still do this and collect for Dementia related charities. However, now we are a group of 10 with eight of them widows!
Alongside these joint activities, I was still able to carry on with my own interests by paying for Professional Carers, either Agency or Private. They would take Gordon out for a few hours or stay at home. It took some time to find the right person for the job but once found, they were a valuable part in our lives allowing me to attend classes, theatre and carry out the clinics I ran. Some may feel I was selfish trying to continue with the other side of my life but I can assure you, I did it knowing that the time would come, when he would be in care and I would be home alone.
"The hardest decision of my life"
As the journey progressed, Gordon had a couple of stays in homes giving me the respite I desperately needed. However I had been made aware that he really needed to be assessed in a Specialist Dementia unit - but - he may not return home after that. Our daughters could see how totally exhausted I was and so when that decision had to be made they were with me. The hardest decision of my life, I really felt I had let him down and the guilt never leaves you. But we had to do what was best for us both.
He went into the Unit a few weeks after our 50th Wedding Anniversary. He accepted it well, spent the whole time asking for me but never got upset. I was able to visit each day and take him out sometimes. Whilst he was there I was given a list of suitable Care Homes to visit and assess which would be suitable for Gordon. I had the company of a super member of the Carers Hub who had managed a Care Home herself so her input was so helpful.
He left there on 10th December 2014 for a large very modern Dementia friendly care home. It was so modern it looked like a hotel so we all referred to it as Dad’s or Grandad’s Hotel! He settled well and I visited every day and brought him out for visits each week.
I brought him home for Christmas day (the family were staying with me not wanting me to be on my own). He walked into the house and said, “This is a nice house!”. He had been away from it for almost three months. That broke my heart, 35 years of memories – gone!
"Our Residents do not live in our work place, we work in their Home"
As his condition worsened, he had to be moved to a Nursing Home and has been there for four years now. I just knew it was going to be a good place as there is a sentence on their Wipe Board in the dining area saying “Our Residents do not live in our work place, we work in their Home!” It is a smaller home for him and a real family feel to it. The staff are my family too. I visit almost every day to help feed him and support them in all their activities. I would kiss him on his head and face and say hello and he would chuckle and say, either Beautiful or Lovely! I do have time out for a week at a time occasionally to visit our girls, Bucks and Geneva. I am never away for longer than a week though and yes he still knows me!
The home began lockdown two weeks before the Government guidelines but they said they would set up an iPad so that we could Skype our loved ones. I was thrilled to hear this as I knew that if he didn’t see me for – however long - he would certainly forget me! The staff are doing a splendid job ensuring that Covid-19 does not get into the home. Only staff members are allowed in, no agency staff – they are coping with any overtime themselves. I know they are all exhausted. They have their temperatures taken before they begin their shift and wear the most horrendous face masks during their shifts. They go home to isolation, can’t see family or friends just like the rest of us, can’t go to the pub/restaurant to let their hair down! I know, the other family members are eternally grateful for their exceptional care during this epidemic.
The Skyping has been a lifeline for me, I still see him everyday and his interaction has been amazing. Last week, the activities co-ordinator said to him as she walked into his room, “Shall we talk to your Christine” and he shouted “Yes!”, she then said who is Christine – he shouted “My Wife!”. Today I asked if he would like a cup of tea and he said “That would be nice”. For someone in the latter stages of Alzheimer’s this is amazing. We haven’t had this continued interaction for some time. The odd day but not like this. I believe that the routine of the same time each day and just the Carer, me and the IPad with no other distractions is the reason for this.
Thank you Drake (Nursing Home) and Gordon for making my life worth while in this dreadful time.
"Tears are never far away but my family and close friends have been a huge support to me throughout this journey"
Being a Naval wife for many years I am used to long periods on my own. It has made me strong but with a very soft centre. Tears are never far away but my family and close friends have been a huge support to me throughout this journey. It has always been important to me to look the best I can, colour co-ordinated, hair done, make-up on. Since the lockdown I have continued to do this, especially before I speak to Gordon and I always put my perfume on too! This is one thing that helps me be ‘normal’ during this abnormal time.
"I have made some amazing friends, we laugh and cry about our different lives as carers."
Joining Mobilise and the Virtual Cuppas has filled a gap in my life during this ‘strange’ time that I didn’t realise I had. I have made some amazing friends, we laugh and cry about our different lives as carers – and believe me they are all VERY different. If you want to do something for yourself – come on and join us – you won't regret it and it may just be the one thing that helps you get through the day. More importantly – a step in the right direction to seeking help from fellow Carers and Professionals. Thank you James, Suzanne and Chloe!