It can be hard to visit someone you love when it seems like they are slipping further away into their dementia, or losing their ability to communicate verbally. When it feels like you’re not making a difference and your visits aren’t remembered it’s understandable to begin to wonder if it’s even worth visiting at all. It is! Though people living with dementia may soon forget the details of your visit, they will be left with the emotional memory for far longer. The feeling of being loved, cared for, happy.
So how do we try and make our visits those which leave the person we love feeling loved, cared for and happy? How do we bring enjoyment to someone living with advanced dementia? Here are my top tips:
I have a bag now which I take to the care home every week. It has a basic manicure kit, a portable speaker, hand cream, a sketch book, photos, pictures and music on my phone. I can then offer different activities depending on the mood and fancy of the lady I visit. There are some weeks it doesn’t go that well, if she is having a particularly bad day, but more often than not it has enabled me to bring her a little enjoyment. Although I have been visiting for nearly two years I still have to introduce myself every week and I know she has no memory of my previous visit. And yet, I do sense that she knows me. At the very least she associates me with good feelings, and that for me, makes all worth while.
We are delighted to welcome John Noble as a new ambassador for Embracing Age. We asked John to share some of his story:
Tell us a bit about yourself and your experience of supporting a loved one with dementia.
Well Tina, that’s a challenge without writing a book! I’ve been in Christian ministry with my lovely wife for almost 60 years! We were married in 1958 and after seeing the folly of some involvement we had in the occult, we soon found the Holy Spirit at work in our lives as we were caught up with the Charismatic Renewal which emerged in the 1960s in a big way. Alongside bringing our five wonderful children into the world, we planted churches, shared in great conferences like Spring Harvest and developed a team to serve the church here in the UK and around the World.
Having been trained at the Royal Academy, Christine had a passion to see the arts functioning freely in worship and the church’s mission. With her team she pioneered the use of movement, drama and art which, with a strong prophetic element, enriched our gatherings at every level. She was greatly used in the gifts of the Holy Spirit and has seen many people delivered, healed and released into ministry. She also did much to gender self-esteem with women and encouraged them to pursue their God-given callings in work, home and church in whichever way the Lord was leading them.
Together we were a great team 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 and wanted everyone to know and pray for us, while Christine was inclined to be in a measure of denial. This immediately led to some tension and made it difficult to manage the inevitable adjustments the progression of the disease brought. Nothing I had been through in life had prepared me for the situation we found ourselves in and so began a massive learning curve for me.
I must admit that I didn’t always handle things very well as the Christine I knew seemed to fade away and a different Christine emerged. It was a Christine who didn’t behave and react the way she had done in the past and left me coming to terms with a disturbing range of emotions from bewilderment and confusion to hurt, anger and sadness. If it wasn’t for the support of a loving family, praying friends and a few people with experience who listened to my pain and took time to sympathise and gently give some words of counsel, I would not have survived.
Two days after my 80th birthday Christine was taken into care for a couple of weeks to sort out her medication which wasn’t working too well. It was the worst day of my life and I wept buckets. During her short stay she was seen to be in an advanced stage of disease and the assessor said that she was amazed that we had managed to cope for so long. So, Christine stayed in the home which was both a relief and a further devastation.
Why are you motivated to see more volunteers in care homes?
I have visited Christine every day for the last 22 months and watched her deteriorate to the point where she is immobile and has all but lost her speech. By God’s grace this experience has softened my heart and changed my understanding of those who have to cope or live with the disease.
I see the incredible commitment of so many carers, the majority of whom are immigrants. They work long shifts and the pay is not great. Every day they face the challenges of residents, most of whom are confused and concerned or totally dependent on their input and a few can be quite aggressive. Their time is taken up with the simple chores of dealing with the basic needs of feeding, washing and watching. Whilst many go the extra mile and try to spend time interacting with residents it is impossible for them to give the attention which would help to make life a little more bearable, especially for those who have no family or friends to visit.
I began to think about the difference a few volunteers, who have received a little training, could make to the lives, not only of the residents, but to the staff as well. I have seen how easy it is to get alongside folk to give them some assurance and a little love which brings light into their darkness and peace in their confusion. We have also made some real friendships with the staff who appreciate us being around and they are interested when we take time to share something of our experiences and faith.
There is another area where I see we can make a difference if we are sensitive. During one of my first visits to see Christine I was distressed and upset. A lady who was visiting her mother took a moment to come over to me and offer kind words of comfort and encouragement. During my daily visits I have had dozens of opportunities to do the same for other visitors who might be facing an emotional challenge with their loved one.
In our daily lives we find it difficult to engage with people who are busily going about their daily routines. However, when a life is turned upside down by the circumstances which bring them to a care home, they are vulnerable and open to receive a little love and tenderness which a caring volunteer might be able to offer.
When I discovered Embracing Age and all that you are doing, I was delighted and thrilled to know that my growing concern to see an army of volunteers supporting care homes across the UK was already being addressed a professional way. Thanks Tina for the amazing work you have started and more power to your elbow!
If you could give one piece of advice to the younger generation what would it be?
Sadly, over recent years in our society, community life is all but gone. The security and support communities provided has been dissipated. Family life has largely disappeared and people are more and more isolated. One tragic result of this is an ever-widening generational gap which breeds suspicion, fear and even anger and aggression between the young and old.
My advice to the younger generation which is emerging in this climate is, please take time to consider the long-term effects of perpetuating this situation. One day you will be old and will need love and support. So, with all the energy, hopes and aspirations you have, let us, together, find a way to buck the trend and reverse the divisions. Let us rediscover the incredible reservoir of wisdom and energy which reside in the two generations and see how this can be a force for positive change in this troubled world.
A local cubs group wanted to do something to help people with dementia, so they decided to spend time with residents at a local care home and also to raise money for Embracing Age. We asked some cubs to tell us about it:
"The First St Margarets Cubs Pack have been raising money for dementia. Dementia is an illness when people forget memories that have happened since they got dementia, but they can still remember things from before.
We have raised £314.05 for Embracing Age. We achieved this by doing a sponsored eat-a-thon and we had a BBQ with all the people with dementia from Dalemead care home in East Twickenham.
This was part of The Million Hands Scouts project. There are five areas that we found out about and then we voted which area the pack was going to support. These consisted of dementia, disabilities, mental wellbeing and finally clean water and sanitation. We found out about each one of these and the pack voted for dementia.
To earn our badge we had to complete these five tasks:
1. Identify need – we learnt about dementia.
2. Plan action – we planed the eat-a-thon and the BBQ.
3. Take action – we had our eat-a-thon & visited Dalemead.
4. Learn and do more – we talked about dementia as a cub pack.
5. Tell the world – this is what we are doing now.
We really enjoyed taking part in this project and have learned lots about dementia."
By Tilly, Maia & Ciara
The residents and staff at the care home loved having the cubs visit and hope it might be the start of an ongoing relationship. A very big thank you and well done to the 1st St Margaret's Cubs Pack!
If you volunteer in a care home for any length of time you are inevitably going to come face to face with loss, as we spend time with people in the sunset of their lives. This was brought home to me this week. I have been visiting Joan (not her real name) who has dementia, for over 18 months. I am her only visitor and everything I know about her has come out of our chats over that time (plus extra research I have done on google), as she has no family that she is in contact with. I’ve grown very fond of Joan, who by all accounts has lived an independent and rather eccentric life. She often shouts at staff in her frustration of wanting to live at home, but has warmed to me and even though she doesn’t always know from week to week who I am, I always sense a recognition in her eyes that I am someone she has a good relationship with.
Over the last 2 months I have a seen a considerable decline in Joan’s physical and cognitive functioning. She is no longer able to tell me any stories from her past. I used to be able to prompt her and she would continue the rest of the story, but now I find myself recounting her stories back to her, reminding her of who she is.
This week was the worst I have seen her and I came away feeling so sad: sad for Joan that her physical and cognitive functioning has declined so much, sad that she is so unhappy and sad for the loss of our relationship, that we can no longer chat and laugh as we used to. And also frustrated at my own inadequacy to really make a difference to her situation.
I suspect I am not the only volunteer who has felt like this and I want to open up the conversation. Has anyone felt like this? How do you deal with it? I guess writing this blog is part of my attempt to process my thoughts and feelings, along with writing a journal. There is always the choice to stop visiting, but somehow that seems more of a running away than a processing of loss.
So at the moment I am digging deeper and thinking of more creative ways to connect with Joan, as her ability to converse diminishes. She has not come across as tactile up till now so my usual ideas around hand massages and touch don’t seem so appropriate. But she does like classical music so perhaps we can listen to that together and it may soothe her agitation.
Loss will be inevitable as Joan’s disease progresses but I want to journey with her through this valley until the ultimate sunset of her passing. And perhaps feeling that sometimes along the way I was able to bring a little light to her darkness and a little calm to her agitation will help me to process my own sadness.
I was chatting with one of our care home friend volunteers a few weeks ago and he said something that really struck me: “I’m not afraid of dementia any more”. Given that dementia is the most feared illness in our society, this is no small thing.
Today I caught up with him to find out more. Stephen, 78, is a retired architect and started volunteering for Embracing Age as he wanted to contribute to his local community. He responded to a request for a volunteer to play chess, without realising that the resident actually needed to learn how to play, which Stephen felt ill equipped to do. Instead they now read poetry to each other and have built a mutual friendship. Stephen has also got to know some of the other residents - he estimates that about 75% of them have some degree of dementia.
I asked Stephen why he’s not afraid of dementia any more:
“I think we all have an in built fear of losing our minds. A relative has had dementia for the last 18 months and watching him crash has not been very nice, if I can put it that way. But there, at the care home, most of those with dementia still try to communicate, and if you make an effort you can talk to them, and you realise that dementia isn’t the end of life for them. I’m amazed how open people are, they plough on with their interests, like gardening, and if you get them on a subject they’re interested in, they really open up. One lady in her 90’s is a barrel of fun, we always joke and she has a really great attitude to her dementia. She says, “I love it here. I know I can’t remember what happened yesterday”. She’s not letting it get on top of her, which I think is wonderful.”
This year at the Council's Full of Life Fair, celebrating Older People's Day, we worked with churches across the Borough of Richmond to showcase the plethora of activities they run for older people. We produced a leaflet detailing all the activities and gave out over 350, with a free tealight. Most people had no idea that so many activities were available in local churches and we were very well received.
To see what's happening for older people in local churches across the Borough click on our interactive map.
I read a very moving post on facebook earlier this week from John Noble, who with his wife Christine, have been influential in church leadership over many years. He shares about Christine's journey with dementia and he has given me permission to reporoduce his post here. Well worth a read:
"It is almost one year since the love of my life was taken into care. Initially she was to go into the home for two weeks in an attempt to balance her medication as various other efforts had failed to keep her on an even keel. I was not permitted to see her for one week which was like being assigned to seven days of mental torture. I spent the week in tears.
When I finally got to see Christine and talk to the nurse who ran the home, she said that she hadn’t realised how advanced and aggressive Christine’s dementia was and she didn’t know how we had coped. Her conclusion was that it was time for Christine to be taken into permanent care.
At that moment I discovered that incompatible emotions such as relief and agony can exist side by side but not without creating turmoil and confusion. Family and the many encouragements and prayers of friends have helped me to adjust to my new situation. However, in spite of the difficulty of caring for Christine, there was a gaping hole in my life.
Months on and a various combinations of drugs tested, nothing seemed to have had the desired effect of keeping Christine calm and at peace. True she had some better days but in reality she spent a great deal of time crying.
This behaviour started while she was at home. I put it down to the multiple TV advertisements which appear in the channels most likely to be watched by older people. Pictures of sick and dying children and heart wrenching appeals for donations every fifteen minutes whilst watching your favourite episode of Poirot, is not a helpful way to relax.
It seemed that these images conjured up visions of suffering children such as Christine had often seen as she sought to minister in deprived areas of the world. Of course, I quickly learned to prerecord the programmes and delete the adverts but those images appeared to remain embedded somewhere deep within.
So it was that some days ago a new drug in a fairly high dosage was tried. When I went in at my usual time to give Christine her supper she was out for the count which is most unusual as she is mostly on the move, shuffling around to see what is going on. Her head was slumped forward and it took me a good ten to fifteen minutes to wake her. Finally, when I did arouse her she could barely walk an inch at a time, staring down at the floor as I helped her along. Once again I was shattered!
This went on for a few days and each visit I struggled to hold back the tears until I left to come home in the car. Then one of the nurses who saw my distress tried to comfort me, “it’s a question of which is best,” she said, “do you want Christine as a zombie or do you want her crying most of the time?”
This was not a choice I was anxious to make and after a couple of the staff helped me settle Christine into a chair, my lovely zombie began to cry anyway. This was the first time I broke down in front of the staff. I sobbed out my thanks for their help and something about not coping and then hurried out to the sanctuary of my car.
The next day at the home I was greeted with concerned looks and while I helped Christine with her supper the nurse said that they were going to halve the dosage of medication to see if that made a difference. Thank God it did! And, hallelujah, we’re on to more smiles and fewer tears! On a recent visit Christine actually reached out and pulled me close and whispered quite coherently, “I love you,” and gave me a full on, sloppy, kiss! Wow, that was special!
My experiences over these last few years, and particularly these months since Christine went into care, have given me huge appreciation for the myriads of people who are enduring the kind of pain we are suffering and sometimes much, much worse. How many of them manage without family help and many more not knowing the blessing of being in touch with Jesus, I shall never know.
I am also incredibly impressed by the staff who work in the home. Most of them are immigrants as, it seems, most of us Brits don’t want to work in such demanding jobs. The long hours, low pay and caring for such needy people, many of whom are almost totally incapacitated, disturbed and sometimes quite aggressive, is tiring work. Yet they are always ready with a welcome and a smile and more often than not, even when they’re busy, tea and biscuits.
On top of all their regular tasks, washing, dressing, feeding, distributing medication, toilet trips and watching out for those in danger of falling or doing themselves some damage, they do try to interact with the residents on a personal basis as much as possible. However, the reality is they just don’t have the time to engage with them as they would like.
All this has led me to ask myself two questions; what could be done to improve life for those caring for loved ones at home? And, how could the amazing commitment of the staff working in care homes be supplemented to provide one to one engagement on a regular basis for residents who need that kind of attention?
I found myself wishing I was younger and had the time and resources to start a charity to train an army of retired volunteers. These, perhaps, older people who are often overlooked and undervalued themselves, could get alongside lonely, pressurised carers in their homes and also make regular visits to nursing homes to stand with staff, lightening the load and making life a little brighter for some residents who need more interaction or have no family to visit them.
In recent years Christians have risen to many of the challenges which have surfaced in our broken society. And, far from having withdrawn from the ‘world’ because we are not ‘of it’, we are now fully engaged in positive action without becoming involved in the ‘world system’ which is what scripture warns us against. Street pastors, prison visiting, healing on the streets, youth mentoring, food banks are just a few of the fantastic initiatives which are making a tremendous difference but surely this is just the beginning and there is much, much more that we can do.
My belief is that there is some saint out there with the gifts and abilities required to mobilise an army to serve in this area of growing concern. Maybe they are just crying out to the Lord to open a door of opportunity so that they can find their place in the heart of what God is doing to turn this nation around and back to its Christian roots. So, maybe you could join me in praying that the Holy Spirit will connect those with the skills to those with the resources. In this way the many, who would love to serve in this needy area, can be empowered to get on and invade our care homes with the presence and the love of Jesus!"
As we wish farewell to a number of our volunteers who are off to university I thought I'd share some of their experiences with you. Here's what Lucy says:
"I started volunteering in December of 2015, and was placed in a small dementia care home a short bus ride away from my house.
When I applied to Embracing Age, I expected to go to a care home and chat to a few of the residents and maybe play a few board games with them. However, when I arrived at the care home, I was asked if I played any musical instruments. I (reluctantly!) admitted that I am able to play some piano, and agreed to find some songs that I could play on the care home’s keyboard for the residents to sing along to. This was not a decision that I regretted. Though out of my comfort zone, it was clear to see that some of the residents had few opportunities to sing and really enjoyed joining in during my weekly visits. I will never forget the moment that one particularly sick resident woke up from his sleep, sang along to one song, told us that it was from war time and then promptly fell back asleep. Or the times when another resident, unable to sing, stood up and danced to the music instead. It has been amazing to see how music can connect us all and it has been one of the most rewarding experiences I have ever had.
It has been a privilege and a pleasure to get to know the lovely ladies and gentleman of my care home and I will always look back on my time there very fondly."
I was chatting to a care home resident who was so excited to be going on a trip out to Marks and Spencers and Boots this week. She explained how lovely it was just to wander round her favourite shops and how it was these normal things in life that she had missed so much since moving in to a care home. After feedback from residents this care home is organising regular shopping trips to the local retail park.
I’ve also had a request from a care home manager this week for a volunteer to accompany a gentleman on regular trips to the local shops and pub. Again, the normal things in life that we just take for granted.
I was reflecting on how these normal everyday activities mean so much to care home residents. It reminded me of the lady I visit who has quite advanced dementia. We spend an hour together every week just chatting, looking at pictures and laughing together. At the end of every visit she is always so effusive in her thanks: “Thank you so much for visiting me. It’s so nice to have someone to talk to! Thank you so much!” Of course, it’s always nice to be appreciated, but I always feel quite humbled to think that something so simple and so small, just an hour of my time, can mean so much to someone. It really is the small things that count.
On 27th April Tina travelled to Newton Flotman in Norfolk to train a group of 8 volunteers in the first replication of our Care Home Friends project beyond the Borough of Richmond.
We hope it will be the first of many replications, making a difference in the lives of care home residents one person at a time.
Director of Embracing Age