I went to see mum yesterday who’s failing memory it seems we have chosen to turn a blind eye to, came to a point where it could no longer be ignored. My alarm bell turned to jungle drums after a call from Dad. For nearly two years there has been a noticeable change in Mum and after a month of various peculiar phone calls ranging from “hello who are you? I found your phone number in my phone” followed by a phone call from Dad asking me to explain to Mum that she’s at home I had to go and see Mum face to face to try to understand what is happening and how it is being managed.
The catalyst was Dad who telephoned to ask me to explain to Mum where she was. At the time she was sitting in her chair on the phone with her precious cat on her lap and she very emotionally said, “I just want to go home! I don’t want to stay here anymore, I miss all my things at home and John will not let me go home. Why can I not go home to Kingfishers?” In truth at this point I was completely blind-sided. I knew Mum had memory issues post operation (she has recently had open heart surgery) but now 5 months post operation, we were all optimistic that she would return to her old self again. This is clearly not the case and Dad has been quietly keeping this to himself and coping with all of it alone! I know at the time of the call that Mum is phoning me from Kingfishers as Dad has called me from their landline and it doesn’t matter how many times I tell her she is at home she can not comprehend it!! I jump into the car as soon as I have childcare sorted here to go and see her.
When I arrive it all seems normal and we chat, hug and laugh. Dad seems uneasy, perhaps because he does not want me to state the obvious and say, “Mum it is likely you have early onset Dementia” or something along those lines. Dad is protecting Mum or is he protecting them both. I am not sure. We dig out lots of old albums together in the house and pour over lots and lots of old photos laughing and remembering past holidays, laughing at our terrible 80’s clothes!! Through all of this though and regardless of how many photographs we show Mum of us all at Kingfishers and remind her of the many good times we have had there over the last 46 years she can not comprehend that Kingfishers is Kingfishers. Before going to see Mum I had telephoned the Dementia Helpline and talked about Mum’s symptoms to a wonderful nurse and she told me that Mum not knowing she is at home is not a false memory she has it is an emotion. The nurse suggested that Mum has an uneasy feeling of not being at home whilst being at home.
Dad, bless him, looks after her every single day and it’s wearing on him I can see it in his eyes very wearing on him and it must be tough because their dearest friends have long since gone taken by cancer and they seem to be very much alone. Their home, Kingfishers is 2 hours away from me and 4 hours away from my brother and this is the first time I have been to see them for a few months. To me, Mum is lucid and normal 80% of the time but the other 20% it is strikingly obvious to me that there is something wrong. I stayed at the kitchen table where we have spent hundreds if not thousands of family meals together looking at my mum who is so small now, eight stone two, and said “Mum, Dad, you need to go to the doctor, you need to go to specialist, you need to have a diagnosis! Is this (a) memory loss due to the medications you are on due to the recent heart surgery, (b) is this dementia or (c) is it Alzheimer’s. The conversation clearly was very emotional for Mum who had tears in her eyes and the only thing I can do is wrap my arms around her and hold her tight and let and know that I am here to support her and help her through this but we need to know what we are helping her with. Later Mum and I are talking alone upstairs and she recounts the conversation from the morning she had had with Dad, which sounded like it was a heated, angry discussion, but she stopped short of telling me what it was about. This concerns me because a symptom of dementia or Alzheimer’s is just that anger, depression, confusion.
I had to leave soon after arriving to get back for the children here at home so I hug them both goodbye. It was tough in truth to leave them. The next day I call them to see how they are and in comes the denial! Speaking to Mum she says “I’m fine, there’s nothing wrong, everything is okay.” This is after I sent the email with information on the Symptoms of Dementia and suggest when they are at their doctors later that week, they talk to the doctor. Both Mum and Dad are in denial “Oh no everything is going to be fine!” they say! Never before have I felt so angry, upset, confused, disappointed and concerned in all my life with my father and mother because they are not prepared to face up to what is happening to them. All I want to do is offer my hand of support and yet I can see they do not want it.
I’m very worried and very concerned and I don’t know how to help. I am also frustrated that Dad is not ready for us to help and I wonder is he doing the right thing. If it were me I would want to have the proper support, medication, if there is any, and start the correct diet as all of this can make a difference in the early stages. When will we be able to step in or when we can, will it be too little too late. All of this worries me very much indeed but we have to, for now, respect our father’s wishes. He is the carer, he is her husband and as a retired Doctor surely he should know best.
This was written on 9th March 2016. Today is 2nd May 2016 and the situation is still the same!