Alzheimer's and Dementia – A husbands Journey of love
Alzheimer’s and dementia is a diagnosis that impacts an entire family. It is an emotional journey with challenges and implications at every turn. There are moments of despair but most importantly, there’s a constant thread of unfaltering love and kindness.
An honest and emotional journey of a loyal husband and his wife’s diagnosis of Alzheimer’s.
Mo was first diagnosed with Alzheimer's back in 2018 at the young age of 65 however, we had noticed things up to three years prior. I still struggled to get my head around this, how could someone so young, fit and healthy be diagnosed with something like this so early in our lives? Mo had already entered into early retirement with myself making the decision to join her at the age of 53 . We had plans of retiring to Spain and enjoying our older years, together in the sun, just the two of us – it was our beautiful dream. No one could have prepared me for the rollercoaster that lay ahead, but yet here we are, our dream has changed but we’re still doing life together, and for that, I am eternally thankful.
Mo’s dementia diagnosis
I had started to notice a change in some of Mo’s behaviours and communication. She was regularly repeating herself over and over or saying sentences that didn’t quite make sense. She often misplaced personal items and put things away in places that weren’t where they would normally go. I found it frustrating at first but the longer this went on, I realised it wasn’t deliberate and it was in fact, just as frustrating and confusing for Mo as it was for me.
I arranged a doctor's appointment and after a number of meetings, tests and scans, she was given a diagnosis of frontotemporal dementia (FTD). I researched and researched this and became convinced it was a wrong diagnosis, Mo only really displayed one symptom of FTD so I pushed for a second opinion. I made so many trips and phone calls to the doctors, my gut instinct was telling me this was a wrong diagnosis `and I was determined to get this right for Mo.
During all this, I was faced with my own health problems. I suffered a brain haemorrhage and I had to be transferred down to Edinburgh. Yet all I could think about was Mo and how I needed someone to help look after her while I was away. The pressure and stress I felt were great, I needed to keep Mo safe, but I also needed to take care of my own health - thank goodness for family and friends.
After 10 days in the hospital, I returned home - Mo was so distressed, she was all over the place because I wasn’t there and it really impacted her. Her symptoms were progressing and all the while I had to still try to get my own health condition to a stable base while juggling a number of prescribed medications every four hours. I recognised that I needed a support system around us, and so we decided to move house to be closer to family.
In the lead-up to the move, and after six months from the original diagnosis, we received a second opinion – Mo was living with Alzheimer's, not FTD. I am so glad I trusted my gut instinct, if I hadn’t challenged this, Mo would not have received the medication she desperately needed to help manage her symptoms. I can’t help but reflect and wonder had I not challenged this, where would the journey have taken us. Would Mo be much worse or I hate to even think would she still be here.
A major change in the environment
The weeks prior to our house move were challenging, Mo couldn’t understand why we were packing all our stuff up and she found it distressing. One of our friends found her disorientated in the street one day and brought her safely home - I was becoming completely overwhelmed. There was so much to think about, not just from a practical side but a safety aspect now too.
We moved into our new home and from the word go, Mo just didn’t take to it. She didn’t recognise it as our new home and she didn’t settle. It had totally put her over the edge and I was becoming completely lost with the pressures I faced. I was constantly trying to keep an eye on Mo - if not she was out the door and away. I was dealing with Powers of Attorney, medical professionals, social workers, change of address details, and constantly being on the phone or computer. Making sure Mo was eating, drinking and taking her medication; the list goes on.
It was impossible to sleep or rest as Mo was regularly up throughout the night – unsettled and disorientated. After three weeks in our new home, I was exhausted: physically, mentally and emotionally. After talking to the authorities, I made the painstaking decision to put Mo into respite care for a week. I remember talking about what respite looked like and where would be best to have Mo placed for her safety. I picked Cowdray as this was the home social work had recommended to me. I was very much of the frame of mind that this would be the hardest decision I would probably have to make.
A move to respite care at Cowdray Club
The first day of our respite stay at Cowdray Club was one I am unlikely to ever forget. That morning, Mo knew something was different, she could sense it and she became upset and distressed. She didn’t want to go into the home and it was breaking my heart to leave her there. The home manager, Phil, was at the door to welcome us when we arrived but I couldn’t go in. I was gone. Shot to pieces – head, body, heart and soul destroyed for an act of betrayal.
I parked my car down the street and cried a river of tears (it’s killing me writing this now 2.5 years later). What sort of man was I to put my soulmate, and best friend, into a care home? The rest of the day was an emotional blur.
Transitioning to permanent care
Mo’s first night at Cowdray Club was a fairly defining moment in our journey. Mo had decided she didn’t want to stay at Cowdray and therefore packed up her belongings and tried to leave the care home. Due to Mos age and presentation, she was very plausible and had cleverly stated to a new member of staff that she had just finished her care shift - having been a care assistant for over 40 years herself. It became clear to all, that to ensure Mo’s health and safety, she needed professional, full-time care. Cowdray became her new home.
Mo was so confused about why she had to stay there. And I was lost too - she wasn’t here with me and it left a constant emptiness that simply couldn’t be filled. I hit the self-destruct button and began drinking heavily and struggled with my own mental health, even having suicidal thoughts. I missed Mo terribly. One minute she was there and the next, gone. Not dead but just not here as I was grieving the loss and being beside her every day . Not sleeping next to me; waking up beside me; sitting watching TV with me; shopping together or going for walks – she was simply not there and it’s the small things that I missed terribly.
Coming to terms with life and Alzheimer’s
At this point, my heart and head were destroyed. I still went to see Mo though. Sometimes I would get to Cowdray’s door and turn away in tears. I struggled to face her. I was the only one she trusted to take care of her, who she loved wholeheartedly, and I had abandoned her and let her down. My guilt was huge and consuming me daily.
This transition period had really big implications for my own mental health. I ended up being off my work for three and a half months. During this, I had taken a nervous breakdown according to my doctor.
I can only describe this point in time as the worst period of my life and as a result, I owe Phil, and his staff, my life and gratitude - not only for looking after Mo so well but for putting up with me. A rude, aggressive, argumentative idiot. They knew I was in pain, that I was lost and didn’t know what I was doing. I’m glad that they recognised my behaviours as part of the ‘grieving process’ because, at that time, I didn’t. I had nobody to talk to or turn to and I felt so lost and alone.
My reality check
At that point, I remember turning to my friend for support. I told him that I was ready to walk away, that I didn’t sign up for this and I wasn’t sure I could do it anymore. His honest reaction was a turning point for me. He became angry and gave me the reality check I needed: ‘So what did you take your marriage vows for then?’
He was right! I married Mo and promised to love her in the good times and the bad; in sickness and in health. Mo had been there for me when I was at my worst, so now it was my turn. I knew I had to wise up and start acting like the man and husband Mo had married and put all her love and trust in.
It wasn’t easy and still isn’t, but with lots of support from Phil and his caring staff, I started to take control of myself again.
Regaining control
My relationship with Mo now blossoms. I see her most days and the time we spend together is precious - we regularly go on day trips out, especially places with lots of flowers as this is something that Mo loves very much. We also go out for lunch/dinner and outings just like any couple. I know Mo is well looked after at Cowdray Club and that means we get the very best of each other when we’re together.
The relative's Facebook page that the home has is a great benefit to me. I’m so grateful to be able to see happy pictures of Mo; singing, dancing, knitting, painting etc, when I’m not there and I can see all the engagement she’s been enjoying. It’s a relief to see her happy and well cared for. This is why I take the opportunity to post our own pictures to let everyone see our adventures.
The Introduction of Doll Therapy
Mo quite quickly became attached to a therapy doll who she named Amy during her time at Cowdray Club. The introduction of wee Amy, her beautiful wee daughter. The love, care and attention that she has for her is amazing. Amy has settled and calmed Mo down tremendously.
Amy now comes everywhere with us and to be honest, I used to get embarrassed at first: walking down the street with a doll, we would get plenty of looks and stares. However, I soon embraced Amy as part of our family as well as being proud of Mo, I am so proud of the fact she carried Amy everywhere she goes as well as myself. I take pride in carrying Amy down the street as well as everywhere we go, Amy is our daughter now if people stare too long then it's their issue - why would it bother me what other people think? Now if people do look, I take time to explain its purpose and benefit and most people understand completely. Of course, there’s still the odd person that has a negative reaction but I try not to let it bother me.
Our life now
Life is a lot better inside me now. My head and heart have calmed down a bit - yes I still feel guilty, I think I will until the day I die but I have managed to find some calm and understanding which is a much healthier place to be.
I have definitely changed as a person over the last few years, I’ve learned to be more compassionate, patient and understanding. It’s something I never thought I’d do but it’s brought out the best in me. I love my wife so dearly, my love for her is everything and for me that’s all that matters. I’m her voice and I’ll be here till the very end.
My reflection today
Upon looking back at everything I have just said, I felt all alone at times but there is help out there - you have to break a life long habit on not going it alone. The hardest thing for me to do was take the first step and ask for help. I had to !!!! I couldn’t do it by myself.
Accepting help isn’t easy but this isn’t a battle you can fight on your own. As someone said to me before “ I have seen you through highs and lows through out this journey” well there are a lot more to go.
So finally, to Phil, and the Cowdray family, thank you for sticking with me all this time. There have been many challenges but we’ve had some great times too. There are moments that I will hold onto so very dearly. You are my support and I am eternally grateful. Thank you, here’s to making more memories.
