John Noble's experience is replicated by many other relatives of someone with dementia who are parted from their loved ones during lockdown.
John is an ambassador for the charity Embracing Age. He's been in Christian ministry with his wife Christine for getting on for 60 years. 'Together we were a great team,' he says, 'and spent many years serving the church from simple tribal village fellowships in Asia and Africa to the city churches of the west and beyond.
'In 2011 Christine was diagnosed with an aggressive form of dementia, and we were faced with the greatest challenge of our long and happy relationship. I was devastated.'
So began 'John's Story', told (3 September 2018) as he took on the role of ambassador for the charity which aspires to see every care home adopted by a local church, with trained volunteers spending time and building friendship with care home residents.
In another guest blog (6 April 2020), John explained how Christine is living with dementia in a care home and he would visit regularly - until coronavirus intervened, and one day he was told he could not cross the threshold.
His anguish is replicated among many other relatives during lockdown.
Fear and suffering
'Suddenly, amidst all the news and confusion about the coronavirus and the fear and suffering which some people are experiencing, the situation becomes very personal.
'As my daughter, Sharon, and I were giving Christine her supper one evening around three weeks ago, one of the nurses sat down with us and gave us the news – no more visits until further notice! We were shocked! There was no prior warning, no time to take it in, just the stark reality that we would not see our darling until further notice.
'I could see the wheels in Sharon's brain turning as I struggled to take it in. She immediately went to the office to see if she could negotiate but how could they give us special dispensation when some others also visit their loved ones every day as we do. I had just missed one day due to traffic in in three and a half years.'
No special privilege
'So after being refused special privilege, which we expected, Sharon runs back to the office with plan B forming in her mind. "Can we borrow mum's special bed and take her home?" she asked, "We can hire a hoist and…" I held back the tears and explained that I could not let her do that. The cost to her health and well-being (and that of her husband) in all that would be required day and night would be just too great and, anyway, how would Christine cope being out of the environment which she has known for the past three and a half years? On top of that, if we vacated her room there would be no way we would get it back, with so many waiting for a place.'
'As it was time to leave, we took her into the conservatory where it is quiet and where we wouldn't be interrupted to give her a last walk and sing hymns with her as we did every day. She was up and rearing to go, we took a few steps and Sharon began to sing, "Amazing grace, how sweet the sound…" I tried to join in but could not hold back the tears any longer. Through the tears and sobs, I went on to explain to Christine that we wouldn't be in to see her for a while and that we loved her very much. She looked at me with a quizzical, slightly confused, look, but I am sure she did not have a clue what I was talking about. Mind you, she did give me two full on kisses, which is unusual, when we're leaving. She willingly kisses when we arrive, but is rather reluctant when she sees we are about to go.
'As I drove home, straining to see through the mists of my tears, the reality of the suffering that so many are, and will be, going through as a result of this most recent interruption to our normal lives, hit me. Apart from fear of the sickness itself and how to care for sick loved ones or being unable to visit, there will be all kinds of sad and tragic outcomes.'
Advice for others
'So three weeks on, how have I coped and what advice can I give that might help others who are going through similar and even much worse situations? Well, I am no expert in all this, and I am learning to trust God every step of the way. I make no apology for saying that my Christian faith in the love and goodness of God shown to me and dear Christine over the years has been a mainstay of our ability to cope.'
'And in that connection I have to say that the freedom to express your grief and pour out your pain is incredibly important. If you don't share my faith, where you are assured that the Lord can bear your tears and questions, then do you have a close friend or relative who can cope with you sharing what, some call, an 'unmourned bereavement'? Since Christine's diagnosis, apart from the everyday feelings of sadness, I have, on at least five occasions, felt I have been through what can best be described as a bereavement with no place to put it, to bury it. The diagnosis itself was tough to hear; the day that I had to tell her she could not drive any more was devastating and she couldn't understand why, and, worst of all, the day that she was taken into care were all times of deep distress and grief.
'I am sure that many of you reading this will have found your way to cope, as we are all different and our circumstances are by no means the same. So I don't see my thoughts as being definitive, but they may just help someone somewhere, which takes me to my second point. In the midst of your pain, try to think of others who are suffering and remember you are in a special place to give encouragement and advice, as you are able to empathise in a way others can not.
'For me, I did this by starting a Facebook page as a dedication to Christine, and that was after I had vowed I would never join the "Facebook club". It did not appeal to me at all and also I am living proof that dinosaurs exist, as I don't have a technical bone in my body. So I sought out help from Sharon, and as a result I have reached thousands of people to give encouragement by sharing our story and the highs and lows of dealing with this terrible disease.'
'Helping one broken-hearted person'
'Of course, I am not suggesting that you have to reach thousands, but helping one broken-hearted person is worth all the effort and there is a benefit – it is therapeutic for you. In blessing someone in pain, you get blessed too, and you find that you are in a new and different kind of family too, linked by your common experiences and needs. The story of your journey is important and might be just what some one in distress needs to hear!'
'Sharing your experience can be really helpful, but alongside sharing we must also be careful listeners. Some of us are great talkers, especially people like me in Christian ministry. We like to hear the sound of our own voice, but important though sharing is, listening at times can be even more vital in helping to alleviate someone's else's pain. And you may be surprised how simply listening, even when you don't have answers, can help and give you the satisfaction to see that person leave with hope because they found a shoulder to cry on.'
'Other things that have been helpful for me have been, for example, finding the inner strength and determination not to be a couch potato or to sit around feeling sorry for myself all day. Life goes on and has to be lived, so there comes a moment when we have to pick ourselves up and busy ourselves with things that have to be done. Often I have started a job while still shedding tears and found that in a short time the tears have dried up, as I focus on the work in hand. The pain does not totally disappear – how could it when the situation remains the same? – but we can learn how to dull the pain so that it does not dominate our every living moment.'
'Having a routine is also extremely helpful and keeps you functioning in a measure of normality. A little exercise can really help you to cast off some of the gloom that might hang over you; make sure that you don't neglect the everyday things like taking a shower or putting on some decent clothes, and try to eat things which will help you to feel healthy, as opposed to comfort eating that will only add to your woes.
'When all the jobs that are necessary for life to go on are done for the day, then, maybe during this lockdown, you will recall some of those things that you have promised yourself that one day I'll get around to that. A hobby, a sewing project, turning out the cupboard under the stairs, re-jigging that flower bed in the garden that has got out of hand or planting tomato seeds in the greenhouse! The problem may be that we feel guilty if we are doing something which might look as if we are getting some pleasure from it, when our loved one is suffering and we can't be there. Please reject such a thought, for guilt has never, ever helped the human condition, and it won't help you now. Taking pleasure in some activity is not a sin and if your loved one was able to speak to you, they would surely encourage you in that!
'Be the best that you can be'
'Well, these are some of my thoughts and I hope they are constructive and helpful. Perhaps they will inspire you to think of how you have been helped to walk through your pain to carry on with life that is there to be lived. Then when the time comes for you to get back to seeing your loved one, you will be in a fit state to be the best that you can be for them once again. May God bless you and give you the peace that comes from knowing that Jesus walks with you every step of the way.'
(This blog originally appeared on the Embracing Age website)