Kate Swaffer and Susan Macaulay continue to help me in my role as Care Partner by sharing their experiences of dementia and making helpful suggestions. This morning they have brought this beautiful song to my attention through a post on LinkedIn and I wanted to share it with others:
It is easy to lose your way when you are a Care Partner: particularly when you are tired. I’m hoping that the following hints will steer me, and others, on a sensible path as we move forward on our journey.
Communicating with someone who has dementia
What can someone with dementia feel?
Imagine if you were to lose the ability to say the right word or understand what was being said, eg when on holiday in a foreign country where you don’t speak the language. You may feel frustrated, angry and look for help, perhaps to someone to interpret for you. You might respond by not speaking at all and withdrawing into yourself of avoiding situations where you have to communicate with people.
Here are 12 Helpful Hints for communicating with someone living with dementia.
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Procrastination is the thief of time so I wasted no time yesterday in my plan To Take The Bull By The Horns. An early morning phone call to my G P led to a consultation at 11 am to discuss my latest concerns with Maureen’s presentation. Dr Munjal was extremely supportive acknowledging the difficulties of being a Care Partner as dementia progresses. He urged caution in confronting Maureen about her reluctance to take medication or recognising who I am. Dr Munjal knows Maureen well: it is always helpful to discuss my concerns with him.
I also manged to speak Mel, my Admiral Nurse, before 10 am and arranged to meet her on Friday morning. She has hinted that Life Story work may be a positive way forward and I have just scanned Dementia UK’s approach to such an initiative. I am optimistic that we may be able t
o develop something that helps Maureen to remember key events in her life: particularly our wedding . There is an opportunity to open this door today when we collect her wedding ring from the jewellers. I’m hoping that the reduction in size will help to keep it on her finger and that her engagement ring will eventually turn up from the safe place where she has placed it.
Once the ring is back on Maureen’s finger we might even try to sort out our Wedding Album: even place some of the duplicate photos strategically around the house. The only problem is that may make recognition even more problematic as we have both aged a little since our ‘Happy Day’ (pictured right). Then of course we have the Wedding Video to watch if if reminiscing seesm to help. .
The 3.30 alarm call came on time this morning as Maureen yelled out ‘Paul’. I found her downstairs concerned that her car was about to depart and leave her alone in the house. My attempts to placate her fell on stony ground with all sorts of abuse aimed in my direction. A cup of tea an hour later seems to have hit the spot and I’m hoping she will sleep as Mrs Dementia and wake as Mrs Collins.
Postscript: I’m optimistic my wife is back: Maureen has just woken moaning ‘she won’t go swimming today after all’ (the mind boggles) and just to help her focus I have gone straight into Tea Boy mode and topped her mug up with further supplies.
We are at the mid-point of Dementia Awareness Week and it seems an appropriate time to take the bull by the horns and deal with two pressing issues. Firstly, I need to encourage visitors to understand the condition a little more and help them become more dementia friendly. Secondly, Maureen and I are both aware that her confusion about who I am is becoming more prevalent and needs to addressed
I made our day very busy yesterday by encouraging Maureen’s brother and his wife to come to Cleethorpes. That resulted in a challenging afternoon and evening with both of us being totally exhausted by the time they went back to spend the night with Clarice, Maureen’s Aunty. We went to bed together around 10 pm last night both worn out by the presence of three other people with their resultant constant conversation.
Around 3.30 am Maureen woke up and said she ‘didn’t know who I was’ and wanted me to leave the marital bed. I retired to the spare room with a throw away comment that ‘this was happening more frequently’. Maureen replied that she ‘didn’t understand why this was happening’ and suggested that we needed someone to help us on this front.
I will approach taking the bull by the horns with caution – compassionate confrontation comes to mind. It is time to discuss the best way forward with professional staff and fellow Care Partners: doing nothing is no longer an option.
It would be wrong to say that all is sweetness and light in our household. My experiences yesterday paint a stark picture of how life can be on most days: the pleasure and pain with dementia the elephant in the room.
I decided to stay around yesterday morning and not hoot-foot it to the Leisure Centre when the carer was in situ. Chloe assumed the role of ‘cleaning lady’ and Maureen and I pottered in the garden as she made our house a little more presentable.
I felt tired in the afternoon and decided to seek a nap on the bed. Maureen continued her quest for a walk by opening and closing the front door as I tried to get some shut-eye: so my siesta came to an abrupt end as I feared Maureen would wander off. Maureen eventually got her way and within half an hour we had a lovely experience as we began our walk in search of blue bells in nearby Weelsby Woods.
We came across a friendly group of people as we made it to the top of a steep incline just as we were about to enter the woods. Following a brief greeting we chatted to them for half an hour or so. After a while we found out they were a group of Missionaries from the Church of Jesusu Christ Latter-Day Saints.
Maureen was particularly taken by Lesly a young woman from Bolivia (pictured right) who she chatted to for quite some time. Lesly was lovely with Maureen and very keen to keep in touch. I hope it is not the last we hear from this lovely group of young people but Maureen was concerned that we must have biscuits in stock if they took up out invitation to visit our home.
When Maureen discovered that some of the group were French speaking she sang them one her favourites from South Pacific:
We didn’t find many blue belles on our walk but what we did find more than compensated for my disappointment at not being able to catch up on some sleep. The pleasure of seeing Maureen in her element in the woods soon turned to pain at ten ‘o’ clock as we went to bed. Once again Maureen made it clear that she wanted the bed to herself as she didn’t want to be too hot. She continued on a similar them at 4 ‘o’clock this morning as she didn’t want a stranger in her bed as she ‘didn’t know who I was’. I’m not finding any of this easy and need to consider whether the best way forward is acceptance or some form of intervention. Any reader of this Blog would realise that my predisposition towards neuroplasticity is likely to mean that I’m not just going to lie down and accept that I belong in the spare room but on the other hand I need to seek to minimise distress. As I have drafted this post I have just received comments from Gill that give me real food for thought.
Maureen continues to be preoccupied with the things that she is unable to remember. Once again this morning she has been saying that she doesn’t know anything about me and can’t remember us getting married. We have been talking about her memory loss for quite some time and our discussions provide food for thought.
I have suggested a number of ways that Maureen might be able to improve her memory including taking advice from those who have expertise in this field. Although I accept that when Maureen wakes up later in the morning her agenda, if she has one, may have changed. However, I think it is worth trying to see what happens if I suggest we try to sort out our wedding photos or watch a video of our ‘Big Day’. The other thing I have suggested is that she tries to write things down that have faded from her memory so she has a point of reference when she can’t recall something.
Maureen had a lovely morning when her son visited yesterday: they sat in the garden chatting while I popped out to the Leisure Centre. They were still at it almost an hour later when I returned. Before he arrived Maureen was very nervous; saying she ‘didn’t know what she was going to talk to him about as she didn’t really know him any longer’. Her brother and sister in law may well visit this week and that should be another opportunity for Maureen to see her family and regain her confidence in the company of other people. With luck I hope to persuade her to make Short Mat Bowls or Social Dancing in the coming week.
The warmer weather always helps and I’m optimistic we will continue to have lots of walks in the coming week. Maureen still struggles with being left with carers while I pop out for an hour or two but having some sort of respite is essential if I’m to continue to have the energy to be a supportive Care Partner. I’m hoping that we will manage an overnight stay in Coventry mid-June so I can catch up with several family members. It would be lovely to see Lisa my eldest daughter on her birthday and I will do my best to make it happen. Just to be on the safe side I will arrange contingency plans in case Maureen doesn’t feel able to make the trip.
One of my most difficult tasks as Maureen’s Care Partner is working out who she thinks I am or alternatively who I am not at ceratin times of the day or night. We had great fun for most of yesterday with an early morning stroll around a local Car Boot Sale to set us off on sound footing. In the afternoon Maureen sang along beautifully to Anne Murray and many others as I kept the deck well supplied with vinyl. We managed another walk early evening checking on the activities at nearby Holiday Centres.
On our return I scanned YouTube for an episode of Dinner Ladies and we both enjoyed seeing Victoria Wood and her fellow workers at their best. I thought we had spent the day together as husband and wife until about 9 pm when Maureen asked me ‘to take her home to her husband’. I was taken aback by her request and explained in a low key way that she was already at home. Unfortunately, none of my attempts to help her grasp my reality worked until sleep rescued us both from a tricky situation.
Maureen woke after about half an hour dozing on the sofa and decided to go to bed. I managed to sleep beside her and we had a relatively peaceful night with a couple of interruptions. Around 4 am she muttered something about ‘making chips’ and a little later on was pleased with my reassurance that she didn’t need to ‘get ready for school’.
I decided to get up around 5 am and have a shower to try to ease discomfort in my shoulder and hips. As I walked across the landing after showering Maureen appeared looking startled and then saying ‘thank goodness it’s you’. I quickly slipped into my ‘Tea Boy’ role to help her snuggle back down in the warmth of the bed.
As Paul Martin my counsellor often reminds me my main focus as a Care Partner is to seek to minimise distress. It’s safe to be Maureen’s DJ or Tea Boy: it’s when I’m trying to be her husband that things become hairy. However, there is one thing that we can both be today is supporters of the Grimsby Town who are at Wembley today in the play-offs. We can both forget our respective loyalties to Coventry City and Nottingham Forest and support the ‘Mighty Mariners’ efforts to get back into the Football League. The outcome of the match is as uncertain as whom Maureen thinks will be sitting beside her as we follow the fortunes of ‘Town’ this afternoon.
Yesterday afternoon Pat a neighbour from across the road popped in to see how Maureen was doing. After she had gone Maureen told to me that Pat had been ill and now had dementia but ‘she didn’t know what that was’. She then asked me if I knew what dementia was and I gave a brief explanation. She then said ‘you think I’ve got it don’t you?’. I said I only knew what the medical people had said and Maureen made it clear that she had no recollection of their diagnosis of her condition.
Maureen seemed pleased with Pat’s visit and told her to pop in or call on us whenever she needed any help. She didn’t seem spooked with the dementia issue and went on to comment on how fit and well she felt at the moment. Maureen’s positive attitude on good days is impressive. However, when the going gets tough I often struggle to deal with the complexities of her presentation so I was very pleased yesterday to receive these helpful suggestions from Susan Macaulay:
‘One of the most useful things I’ve learned on this dementia journey is that when people who live with dementia exhibit responsive behaviours which appear angry and/or aggressive there’s usually a perfectly reasonable and rational explanation for it – from their point of view.
Such behaviour is not random (although it may appear to be), it’s not willful (although it may appear to be), and it’s not their fault (although it may appear to be).
“Problematic” responsive behaviour is most often the result of:
The obvious way to stop anger and aggression is to address the root cause:
In the third instance, dementia care expert Teepa Snow suggests learning, practicing and using these six simple phrases to acknowledge the person, accept responsibility, diffuse the situation, restore positive energy and create the opportunity for healing.
Meaning what you say when you say these phrases is important. Putting yourself in their shoes is helpful. Ask yourself these 20 questions to imagine what they might be feeling.
You can experience the power of the statements in the video below in which Teepa plays the part of a care partner, and the woman in the light blue top plays the part of a person living with dementia (see disclaimer)’.
I managed to step inside Maureen’s world yesterday and grasp another aspect of her reality. Mo, a neighbour, had tried to help Maureen when she found her in the street looking for our house. Her attempts to encourage Maureen to understand that she is no longer safe to be out alone resulted in hostility. After she left Maureen explained to me that other people didn’t understand that her memory loss had been ‘short-term’. For the first time the penny dropped with me on Maureen’s explanation of the consequences of stroke: ‘that she lost her memory once’.
It was fortunate that we were in good humour from walking in the early morning sunshine on the Prom before Mo’s helped Maureen to find her way home. I used our happy demeanour from our early morning stroll to laugh off Mo’s attempt to put Maureen in her place about ‘being naughty and wandering off’. Laughter has been the furthest thing from my mind at 4.30 am this morning as I have tried to distract Maureen and not absorb her hostility towards me.
As we enjoyed our day yesterday with several walks I grasped that Maureen was often unclear how I fitted into her life. She frequently told me about ‘her Paul’ and must have asked me the same question about my son half a dozen times. Around 8.30 pm she became agitated that she couldn’t remember or see any wedding photographs around the house. I didn’t remind her that she had torn one of them up and moved others out of view.
This morning Maureen’s confusion is rampant: utterly bewildered about how her daughter let her marry a guy she didn’t know. I have tried everything I know to put her mind at rest and eventually withdrawn myself from the firing line. ‘Mrs Dementia’ is no fun to be with this morning she clearly isn’t happy with arranged marriages and is threatening divorce.
I’m hoping that further sleep will lead to a change in Maureen’s presentation with ‘Mrs Dementia’ taking time off. Chloe today’s carer will be here at 10am and I will be off shortly after her arrival for an appointment with my physio to discuss the way forward with the tear in my rotator cuff. When I return I must stick to the mantra of not absorbing and using distraction to minimise distress.
It would be really nice if ‘Mrs Dementia’ took a short-term break over the weekend if not I will need to be on the phone to the Care Agency for additional support. I realise I am very fortunate to be supported by a team of professional staff who recognise the need for flexibility in our Care Plan: they will fully understand that yesterday I was able to cancel a carer sit but on Saturday and Sunday I might need additional support. As I have said before the mantra in North East Lincolnshire is: ‘look after your carers’.
Yet another disturbed night has led me to realise it is time to back off on several fronts. I had a good chat with Sandra one of the Support Workers in the Admiral Nurses office yesterday and began to see that ‘jaw jaw is creating war war’: challenging Maureen about sleeping on the sofa only leads to distress for both of us It is time to accept that trying to persuade Maureen of the errors of her ways is naive: I have to accept her reality. Bob DeMarco from the Alzheimer’s Reading Room talks the need to take a step to the left and enter the world of the person who has dementia.
I followed Sandra’s last night and didn’t object to Maureen sleeping on the sofa. I heard her moving around at 1pm and found her worried about intruders. She looked a fearsome sight armed with a large plastic spoon and draped in a blanked: no wonder she saw the scoundrels off! I accepted my reprimand for going to bed and leaving her to keep us safe. After a while Maureen decided to go to bed and I eventually chanced my arm and lay alongside her for a pleasant half hour. Unfortunately my thinking-hat was switched on and I hope blogging might help me to clear my mind.
I’m going to cancel this morning’s carer sit and have a chat with the Admiral Nursing staff about reviewing future arrangements on Tuesday and Thursday mornings. I think it is possible that the trigger for Maureen’s current presentation is the additional carer sits fuelling her accusations that I’m arranging baby-sitters so can I go out and have a good time.
There is little doubt that Maureen rose the occasion during our day trip to Coventry last week. Another similar opportunity beckons this weekend when we could venture up North rather than receiving a visit from her younger son and his family. I think a change of scenery coupled with backing off by taking a ‘step to the left’ might help on the next stage of this journey.
