A story familiar to all Care Partners:
Dementia: A Carer’s Story
A story familiar to all Care Partners:
Dementia: Finding Some Missing Links
We were very fortunate yesterday to benefit find three missing links in our chain of support. Maureen’s presentation was stretching me to the limit in the morning and once again our Home Treatment Team came to my rescue. Marie arrived less than an hour after my request for support and was just what the Care Partner ordered. Within minutes of her arrival, she gave Maureen the psychological support that she has been craving for quite some time.
My sister and her husband arrived as Marie was leaving. I saw her out to her car, thanked her for her timely intervention and hopefully set up further visits.
Jill and Rob carried on Marie’s good work. During the four hours that they were here, their thoughtful behaviour helped Maureen to enjoy a lovely afternoon. She walked and talked arm in arm with Jill for over a mile following a lovely lunch brought all the way from Coventry.
I have encouraged Jill and Rob to leave us to it today. Maureen will be tired after such an eventful Saturday and will probably rest for most of today. However, yesterday fills me with optimism that we have stumbled across just what we need: ongoing support from Marie, and visitors who are dementia friendly, come in small numbers, and feed us into the bargain!
We both slept well last night; sharing the same bed for most of the time. Whenever Maureen woke up distressed by her thoughts I was able to offer immediate comfort and we both slipped back into sleep. As always, I couldn’t offer any meaningful solution to Maureen ‘wanting her mum’ but holding her hand and saying positive things about someone I had never met seemed to do the trick. What a difference it would make to our lives if we could get such good rest every night: that would be a find worth its weight in gold!
Dementia: OMG Struggling With DNA
Once Maureen’s dementia became obvious Iwona our local pharmacist stressed the importance of Do Not Absorb: to ignore any vitriol that comes in my direction. I think I might just pop in and see her shortly for some ‘medication’ to help me boost my DNA this morning.
Maureen’s vitriol began yesterday afternoon and resumed at midnight. She went on walkabouts in the afternoon so I grabbed my bike to track her down. When I caught up with her a few streets away she ignored me as she shuffled along in her slippers. As I trailed her she eventually told me ‘she needed to get back home to inform the police that her car had been stolen’. It took me an hour to shepherd her in the direction of home, then a quick dash to pick up the car : ‘the thief’ then drove her the short distance home.
Maureen was tired from her afternoon hike so she went to bed around 8 pm. She woke at midnight – shouting for help because ‘someone was on a ladder at her bedroom window’. My efforts to help were met with derision and questions about my ability to keep her safe. A couple of hours later she was awake again concerned that ‘someone had stolen her clothes and she had nothing to wear’.
Yesterday was not a good day by any stretch of the imagination; with Maureen’s presentation once again a cause for concern. Lack of appropriate personnel at the meeting to discuss requested psychological support means that it is likely to be a few weeks before that issue can be progressed.
One positive this morning is that my sister and her husband are visiting this area for the weekend. They would give any Care Partner a boost; with Rob firmly grounded in the real world of engineering, and Jill dementia friendly from her years of supporting mum.
Dementia: Music Leads To Recovery
Maureen amazed me once again yesterday evening when she sang and danced along to Bing Crosby for over an hour. She had woken from our late siesta and immediately burst into song with ‘good morning good morning…’ so I went for it and fired up the record player and put Bing on the deck. The amazing part of all this: she had been on her knees in the afternoon freaked out by fear of the unknown.
It is unusual if music doesn’t lift Maureen’s mood and I generally hit the right note knowing who to put on the deck or call up on YouTube. I also have a fair idea of what triggered her fall into despair: another new kid on the block. That is why I sent the new carer off early and dragged Maureen on a shopping trip in the afternoon. I knew that I couldn’t risk repeating my mistake of earlier in the week.
Chloe Maureen’s favourite carer will be here at ten. If I could clone that woman I would and share her with all and sundry. Chloe is the epitome of a good carer and has taught me so much about dementia and how to support Maureen. Gail will be back on Wednesday and Thursday, she is another sound example of person-centred care. I have every confidence that Hayley and Hannah from Hica ( our Agency) will pull out all the stops to find a suitable replacement Girl Tuesday as soon as possible.
Maureen needs consistency and routine. I have messed up by seeking changes in the pattern of sits to suit my needs: A BIG MISTAKE. Fortunately, we are back on the straight and narrow from next week with all calls 10 until 1. Maureen doesn’t need some SILLY B (ME) messing up her routine and Hica could certainly do without the additional work I have caused: must pop in with some chocolate later in the day!
Dementia: Playing My Cards Right
Once again I want to put on record the excellent support we receive from Focus Adult Social Work. In the last few months, Gary our social worker has worked tirelessly to update our Support Plans to reflect our current situation. That work has now been completed along with sorting out the annual direct payment that is generously provided in this area.
Gary and I will be meeting with our Care Agencies early next month to ensure that their Care Plans have been updated. This will also be an opportunity to discuss the need for continuity of carers and appropriate recording of Maureen’s presentation.
We are also hoping that our efforts to get Maureen psychological support will come to fruition at a meeting that is taking place on Friday. The Home Treatment Team always come to our aid in a crisis but we are requesting ongoing support from a named professional.
Our day went well yesterday with Dianne, refreshed from her holiday in Portugal, putting in a great shift. Maureen was a revelation in her company responding well to Dianne’s interventions. I was happy to leave them and pop out to the shops: such a relief that she was in safe hands after an unfortunate experience on Tuesday.
Clarice Maureen’s aunt visited in the afternoon. There is always laughter in the house when those two get together as they reminisce about the good old days. Yesterday was no exception and we took up Clarice’s offer of a cup of tea when we returned her home and the girls ‘continued to yarn’ .
After tea, I got out a pack of cards and played Patience as Maureen sat alongside me on the sofa. She watched intensely as I failed to complete the game after several attempts. I’m tempted to build card playing into our evening routine and persuade Maureen into the game – she has often told me that she was a great fan of Clock Patience when she was younger.
My lesson from yesterday is to stick with my patience and continue to play my cards right.
Dementia: A Costly Mistake
I made a silly mistake yesterday afternoon and paid for it later with another night of disturbed sleep. One of my golden rules is to try to induct new carers by staying around and coaching them in their first few visits. As Mel my Admiral Nurse often says ‘she wouldn’t leave her cat with someone she didn’t know’. However, I was so determined to resolve the broken zip on Maureen’s favourite cardigan that I left my dear wife with an unknown quantity for well over an hour yesterday.
I realised my mistake when Maureen didn’t celebrate the result of my endeavours. When the carer left Maureen revealed all with; ‘she never stopped talking’. What I had done was totally unfair on both parties as is the behaviour of the Care Agency.
Our ‘Silly Mistake’, mine and the Care Agency’s, is a prime example of Fail To Plan: Plan To Fail. Carers are not magicians they need information and coaching when they are dealing with a new call. I’m hoping that the meeting that our social worker has agreed to convene with both of our Care Agencies (more on this later), will ensure that in future new staff are prepared before they visit. In future, I do not plan to leave Maureen with new kids on the block before they have been inducted!
Footnote: The one thing I did get right yesterday was calling off today’s day trip to Coventry as I’m worn out once again after another night with little sleep.
Dementia: Time To Listen
It is time to do something that I often struggle to do: to listen to other people before I continue to plough my own furrow. My body and other people are telling me I have to change my ways or my efforts to keep Maureen at home for as long as possible will fail.
My plans for tomorrow are a typical example of my belligerence. A 14 hour day filled with emotion can only leave me drained and my immune system further weakened. I would only return from my trip to Coventry exhausted, unfulfilled and unfit to look after Maureen.
It is 4.30 am and I have been lying awake for a while; reluctant to face reality. At 70 years of age, I am ‘no Spring Chicken’ as Gary our social worker kindly pointed out the other day. There are no days off for a Care Partner and I need to be on my toes 24/7. Therefore, exhausting day trips to Coventry have to become a thing of the past.
I simply have to bite the bullet and schedule a further stint in Ashgrove Care Home for Maureen. Then I can have an overnight stay in Coventry and drive back safely the next day. This will also mean that I can take my mum out for a ride in the car when I visit. She will forget that I have been as soon as I get on the M69 to travel back to Cleethorpes. However, seeing the pleasure on her face as she navigates a ’99’ in the front seat of our car, as we sit in the car park of Coombe Park watching young children play, is something I will never forget.
I hope those people who have kindly facilitated a 14-hour carer sit tomorrow will understand my need to review my plans. Perhaps they will take some solace that I’m showing signs of being prepared to listen to what they have been telling me for quite some time! I will also seek an appointment with our G P this morning to discuss several things that are a cause for concern at the moment.
Dementia: It’s Time To Walk Away
The going got particularly tough last night, as it has been on several occasions, in the last week. Maureen was lambasting me for the appalling state of this ‘Care Home’. She spent a large part of the day trying to do up a broken zip on her favourite cardigan frequently expressing her frustration that ‘this place is rubbish’ She exclaimed that: ‘everywhere in the house stinks, and there is nowhere for her to sleep in this dump’.
It was one of those occasions where I had to take several deep breaths, walk away, and hope that things would be a little different with the passing of time.
Maureen returned to the attack at 4 am this morning; blasting me with both barrels for letting other people steal her clothes. I tried several Compassionate Communication strategies without success; eventually walked away and left her to it. YouTube became my escape from the ongoing rant and I chose songs to reflect the struggle when Mrs Dementia is at full throttle. If you visit my Good Music page you will hear what I mean
Unfortunately, we have new kids (carers) on the block on Tuesday and Thursday. I’m hoping that the Care Agency will be able to switch Hilary into one of those slots as Maureen really enjoyed her company last week – two new faces in a week will not help at all
Dianne, one of our carers, has agreed to do a long shift on Wednesday so I can visit family in Coventry. If my sleep pattern continues to improve I might even drive down and call in at a branch of Leading Labels, near Lincoln, to see if I can find a replacement cardigan in the same colour as the one that is damaged. However, I’m not naive enough to expect any praise if I manage to find another cardigan. The more likely scenario it is that I will be accused of desertion: compassion and empathy went out of the window here as soon as dementia took its toll on Maureen’s personality.
Dementia: Compassionate Communication
I was sorting out some of my paperwork on dementia yesterday and came across ‘Compassionate Communication with the Memory Impaired’ by Liz Aires. I scanned it again at the time and hope I remembered the basics at 2 ‘o’ clock this morning when Maureen woke and demanded to know why I was in her bed:
Compassionate Communication with the Memory Impaired
by Liz Ayres
A Volunteer of the Alzheimer’s Association and Former Caregiver
DON’T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.
DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate ‘but’ from your vocabulary; substitute ‘nevertheless.’
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.
Maureen’s response to my explanations was to suggest divorce if I wanted to behave like a teenager and get into bed with anybody!
Dementia: Dream or Reality?
I woke up from a vivid dream this morning struggling to grasp where I was in my life story. This frightening start to the day gave me a glimpse of what it might be like for Maureen each time she wakes after sleeping. Only a few minutes ago I heard her crying in the bedroom as she had woken and not known where she was.
Yesterday afternoon she told me that she had been dreaming of life as a child; waiting to go into the Saturday Morning Matinee at the Empire in Nottingham. Later in the evening, she was frightened because she thought there was a strange man in the house.
Our sleep patterns seem to be improving slightly with Maureen accepting my gentle encouragement ‘to try for another hour’ when she wakes during the night. The Webinar on Sleep and Dementia has also given me some further ideas on how we can both get a good night’s sleep:thank you Amazing Susan for pointing me in this direction.
When Maureen woke this morning she was concerned that she didn’t know what we were going to do today. So I replied in my normal fashion: ‘to have an easy day’.
