I have found it difficult to know how to play Christmas this year. Now Maureen’s dementia has progressed to severe I’m often caught on the hop. She clearly has little concept of time or place and often who people are. Thankfully, she generally sees me as one of the good guys in her life: often her dad or her grandfather – sometimes ‘Paul’. Although the latter is not always easy to fathom, as ‘Paul’ can be the man who runs this Care Home or her husband.
For the first time in ages, we have shared the same bed for the last seven nights. This has meant that it has been much easier to settle Maureen if she has woken up distressed. Generally, a small amount of physical contact and a few words of comfort have been enough to help her get back to sleep. Unfortunately, this morning has been rather different.
Maureen woke in the early hours telling me she was parched. The usual routine of a beaker of water became an elongated period of confusion. Her questions were bewildering as she tried to determine her reality. She even wondered if how she would know if she was drinking poison! It took a long while to reassure her and persuade her to return to bed. A couple of hours later Maureen was asking me: ‘what is this Santa thing?’ I couldn’t think of an appropriate answer and left her to her own devices for a while.
A short while afterward, I found Maureen downstairs in the dark. She seemed relieved to see me, greeting me with: ”there you are I have been looking for you.’ Then she asked me: ‘if the boys had got what they wanted for Christmas?’ When I told her I was unsure as they lived away she said: ‘they come and see us sometimes though.’
Maureen is currently asleep in the single bed in our lounge; ‘my den’. Deprived of my resting place I have been doing some domestic duties so that we can have a relaxing day together. What I’m still not sure about is how to deal with ‘this Santa thing’: should I give her the presents he has left in the spare bedroom or will that only add to her confusion?
Just as I am about to post this piece Maureen has come upstairs to see what I’m doing. She has just said: ‘I wanted to get you a present’ – I have responded with what I have always said: ‘you’re presence is my present’.
A recent article in Linkedin caused me to think about how to deal with Christmas now Maureen’s dementia is classed as severe. Written by Rick Phelps it made the point that flashing lights, along with lots of noisy folks around, are the last thing he needed during the Festive Season.
When Maureen and I were out walking the other day I asked her if she would like us to put up a Christmas Tree. She responded with we didn’t need to trouble ourselves as there were already plenty around. However, we one spot of impromptu carol singing that evening and some friendly neighbours were delighted with our efforts.
Maureen woke this morning with anxieties about not wanting to get up the chimney. Just to ease her concerns I held her tight, told her she wasn’t going anywhere and burst into song:
Happy Christmas and a Healthy and Peaceful New Year
Maureen has been in great form since she came home from two weeks in Alderlea Care Home. ‘Little Miss Dynamite’ has persuaded her to engage in personal care, change her clothes and take her medication every morning. We are very fortunate that this real diamond will be with us for four mornings a week from now on. Maureen doesn’t remember names these days but was keen to point out that she always enjoyed her time with the ‘tubby lady’: she said that this was a kind way of describing her friend.
The real glitter of LMD is her ability to be flexible in an attempt to meet Maureen’s needs. Usually, they are singing together as I open the door after I have been out for a while. Today, she has responded immediately to my suggestion that Maureen might enjoy doing crosswords again. As I type I can hear fits of laughter from downstairs as she encourages Maureen to solve the clues.
Today’s teaching is from Gen Togden the Resident Teacher at Madhyamaka Buddhist Centre:
His teachings are amazing and have inspired me at a very challenging time in my life.
My good friend Kelsang Dorde has had a similar impact on my well being.
Anyone who opens a meditation session with: ‘put on your seat belts you’re in for a bumpy ride’ has clearly understood life when a loved one has dementia.
My time here is drawing to a close. I couldn’t have been at a better place to calm my mind at one of the most challenging times in my life.
I am also grateful to so many people who have supported me during my struggles as I have reluctantly accepted that I can no longer provide the level of care that my dear wife deserves. In particular, Leah Bisiani who has provided exceptional support as I have walked down this tortuous path::
I’m sure my mum would want to say ‘thanks, duck for supporting that lad of mine’.
I have so many things to thank my cyber friend Kate Swaffer for. Making me aware of this video is something else I want to hug her for:
Maureen went into Alderlea Care Home for a Respite Break yesterday.
I’ll be leaving for the Madhyamaka Buddhist Centre in Pocklington shortly.
I need the company of kindred spirits to help me clarify my thinking.
I now accept that I cannot provide the 24/7 care that Maureen needs.
Maureen caught me at it early this morning – whistling this number in the kitchen:
When she found me clearing up the debris from last night’s meal she was holding two blankets. She had spent the night on the safety of the sofa: a place where men would find it difficult to get at her. As soon as she saw me she gave me a beautiful smile so I hugged her and burst into the above song.
I then told her I was going to remind her of the first cassette tape she had ever bought for me:
As soon as the opening lines appeared on out TV screen Maureen said: ‘I remember that one’. Music continues to be such an important part of our life and Girl Monday/Tuesday and Friday often resorts to YouTube. When I return from my time off I hear them at it, with singing and laughter ringing out as soon as I open our front door.
The first meeting with Maureen’s Care Coordinator went really well yesterday. When I mentioned the need for clarification over Maureen’s diagnosis she agreed that it was a matter that needed clarifying – ‘there was nothing to lose’ by revisiting this issue. It has always concerned me that Alzheimer’s was diagnosed in the early days but that has now been revised to vascular dementia.
The really good news from yesterday was there is now a Crisis Contingency Plan in place with numbers to ring whenever the going gets tough: far more than words!
This week’s song of the week has to be ‘So Wrong’. I thought that Maureen going into an Acute Mental Health Unit would be a disaster for us both. It’s a time to eat my words.
The Konar Suite is nothing like your typical Mental Health Unit. My reservations that they would turn her into something like my brother well ill-conceived. He has Alzheimer’s and came out of an MHU in Coventry a shadow of his former self: goodness knows what they did to him.
I have to admit it took me a while to trust the medics on the Konar Suite with my dear wife. I must have been deaf to have not listened at first hearing. Their message was loud and clear ‘we have to weigh up the benefits of any medication against the risks involved’.
Maureen is settling well after three weeks away from home. She generally makes her way up to our bedroom at night after dozing on the sofa for a while. That is another thing I have to thank the staff on the Konar for – not only did they encourage her to sleep in a bed whilst she was in their care; they coached me on how to do the same when she came home.
Although Maureen has been discharged from the Konar Suite staff are always available for out of hours telephone advice and will make a home visit in an emergency.
It is now a week since Maureen’s discharge from the Konar Suite. She is beginning to settle down to being back home after three weeks in an Acute Mental Health Unit. Just as her Consultant stressed her presentation is subject to fluctuation. My status can change from her husband to the wicked man who is stopping her from going home at the drop of a hat: from hero to zero.
We still have great fun together and Maureen’s wicked sense of humour shone through when she was in the hospital. When a staff member was encouraging her to take lunch Maureen said ‘she wasn’t hungry and suggested that the individual concerned would be well advised to eat a little less’. I’m not always sure our larking about is always well received by professionals when they call. I hope it doesn’t lead to them to place us on some psychiatric scale.
I’m doing my best to stick to routines that help Maureen’s dilemma of ‘not knowing what to do with her time’. It is now very obvious that she needs prompting to complete most tasks. Her days of hanging out washing on the line have gone. She can manage to assist with such tasks but forgets what she is meant to be doing if she is left to her own devices.
We slept together beautifully last night and that is a real bonus in the scheme of things. I know it’s very early days but I’m optimistic that things can only get better if I continue to take breaks and don’t try to do it all by myself. It is so reassuring that the Home Treatment Team are monitoring how things are going and are calling shortly for yet another chat.
I have to admit my reservations about Maureen going into the Konar Suite were ill-conceived. They treated us both with the utmost dignity and respect along with lots of TLC. To experience a Mental Health Unit that does not see medication as the answer to everything was so refreshing!
On Saturday morning I received a copy of the assessments that had taken place to determine Maureen’s mental capacity. These documents make sobering reading. They are a stark reminder that Maureen no longer has any concept of person, place or time. They also point out her high level of need.
The assessment was required to as part of a DoLS Application. Within the documentation, there are several references to the need for a robust Care Package before Maureen is discharged from Konar. At a time when additional carer support is needed, there is nothing in place.
Yesterday, Maureen’s initial pleasure at seeing me soon declined. She said once again that she was only being detained on Konar ‘because of the lies I had told, as I wanted to get rid of her’. She declined to have Sunday Lunch with me as ‘ it was too early and you shouldn’t eat at your place of work’. She then retired to the patient’s lounge choosing to ignore me for the remainder of my visit.
I was pleased to hear from a member of staff on Konar that Maureen is still their patient. It would be irresponsible to attempt to bring her home her home until a robust Care Package is in place.
Today’s teaching from Dekyong is very appropriate:
When I called in to see Maureen yesterday morning she was fast asleep in bed.
She looked so peaceful that I saw no point in waking her.
A member of staff suggested that I take the day off.
She then invited me to have Sunday Lunch with Maureen.
Kindness and compassion are always on offer in the Konar Suite.