The Kinks sum up my feelings this week:
On some days I can do nothing other than wait for Maureen’s reality to change. Last night was a prime example. When she woke after dozing on the sofa; concerned that she needed a clean pair of nickers she accused me of stealing her underwear. When I showed her where she kept her knickers she said she didn’t want them at that moment. Then she got into bed and told me I wasn’t allowed in the same room as her. Four hours later I’m dealing with an entirely different reality.
Maureen called out Paul and woke me from sweet dreams at 4 ‘o’clock this morning. She then joined me in the spare bedroom saying it was cold and we wouldn’t come here again. Within a few minutes, she was fast asleep beside me in bed leaving me to ponder over what had been going on. A short while later she shouted me as I boiled the kettle for the first cuppa of the day, asking me where her mum had gone.
There is a simple explanation for all of the above IMHO: Maureen is time travelling. She is going back to the time when she lived with her parents. She slept in the same bed as her mum. Her dad wasn’t allowed in the same room as his wife because she was afraid she would be harmed if he had an epileptic fit in the night.
I’m never concerned when Maureen thinks I’m her dad. He sounds a wonderful man. Unfortunately, he had passed before we met but I know I would have got on with ‘Union Jack’, as he was fondly known as a house on fire. We were both Union Men:
As I type Maureen has joined me in the office worrying that her mum is cold. I have encouraged her to move into the marital bedroom and found an additional blanket for her mum. She is shouting me now: ‘dad where have you gone?’
NB: Both of Maureen’s parents passed a few years before we met. She has just encouraged me to join them in bed. Perhaps, something she always wanted to see – her mum and dad together in the same bed.
I sought help at 4 am this morning after a dreadful night. Firstly, I spoke to Single Point of Access to ask them to pass on a message to our Key Worker that things were getting out of hand. Then I contacted a Mental Health Nurse in the Konar Suite about Maureen’s presentation. She gave me excellent advice and suggested coping strategies based on her experience of Maureen when she was in their care.
It is possible that my attempts to provide additional stimulation for Maureen in the evening have upset the apple cart. It was lovely to see her singing and dancing to Nat King Cole yesterday but a quieter evening might have led to a more peaceful night.
It is so helpful to have support available 24/7 when the going gets tough!
We are now halfway through the cycle agreed at the Best Interest Meeting. Two weeks today Maureen will go into Alderlea Care Home for a week.
Maureen’s Care Coordinator is due this morning and this will be an opportunity to discuss how things are going. Tomorrow our Key Worker and I are meeting our Care Agencies to review progress.
Our carers; the girls’ as Maureen calls them have been remarkable in the skill and compassion they have shown in helping Maureen to settle at home. They have worked tirelessly to involve her in domestic duties despite her claims that she is entitled to be a Lady of Leisure. In her view, such things as general household duties including the preparation of food are my job ‘as I don’t do anything else for her’.
Although I will have a week off in a fortnight, the current arrangements are no longer adequate. I have already clarified that one of our carers is available for an additional three-hour shift a week. This will mean that I can have six hours to myself on alternate Tuesday’s and Wednesday’s. Such an arrangement is a phone call away.
Paul McKenna could help me to solve my sleep deficit. When Maureen wakes distressed in the night I’m finding it increasingly difficult to get back to sleep. I’m hoping I can find my ‘Sleep Like A Log’ CD as McKenna has helped me to count myself back to sleep at previous difficult moments in my life.
When I was looking for some new clothes for Maureen last week I stumbled on this little beauty in Iceland -The Food Warehouse. It is amazing value for £29.99 and an excellent reminder of the good old days.
I used it several times when Maureen was in the Konar Suite to play some of her old favourites and we even had the occasional smooch in her room. We have decided to take it with us the next time we visit my mum so she can tap her feet to Frank Sinatra, Glen Miller and Nat King Cole.
I’m hoping that another purchase a 2-in-1 Calendar and Day Clock will help Maureen’s difficulties with the orientation to time. I haven’t taken it out of its box yet as I realise that such changes have to be managed gradually if they are to have a positive impact.
I also found a beautiful jacket in Maureen’s favourite colour last week. She is really looking forward to wearing it for the first time today.
I’m hoping she has now caught up on her sleep as she spent most of the last 24 hours on the sofa. However, when you consider what she has been through in the last few weeks she is doing remarkably well.
Update at 9.30am: Maureen’s new jacket fits like a glove and she is delighted to have something new to wear. She has now retired to the sofa exhausted by my attempts to help her into warmer clothes before we ventured out. When Girl Thursday arrives I’ll take the opportunity to return some further purchases that she is not keen on. Hopefully, she will model her new jacket a little later in the day
Maureen’s period of assessment has now been completed. Her Consultant has concluded that no medication is needed at the moment and her fluctuating presentation is to be expected. The Best Interest meeting that is scheduled for next Friday will determine her future care and accommodation.
It would be pointless to harp on about the delays and duplication under the Mental Capacity Act that will delay Maureen’s departure from in the Konar Suite. I made the point yesterday that this is another example of the law becoming an ass.
I could waste a lot of energy attempting to speed up Maureen’s homecoming but it would be exhausting. Following advice from a number of quarters, I am going to use the next ten days or so as a Respite Break. This will set the scene for how I intend to prevent Carer Breakdown in the future.
I have already made it clear to Social Services that I will be taking regular Respite Breaks. From now on my shift pattern will be four weeks on, one week off. With the proviso that two weeks off may be necessary on occasions. I have already discussed the viability of these arrangements with Alderlea Care Home. We have talked about how this might pan out, along with Maureen attending for Day Care on Monday’s.
Sincere thanks to two of my cyber friends: Leah Bisiani
and Tracey Maxfield
for their patience in helping me to see that an exhausted Care Partner is on a very dangerous path indeed!
When you are exhausted and your wife says to you:
‘I don’t know who I am.
I don’t know where I am
and I don’t know what is going on.’
It’s time to take a break to give yourself time to think.
This is why Maureen is now in Alderlea Care Home for the next week.
She won’t be with us today our Pocket Rocket. I was tempted to call her Little Miss Dynamite until I heard what a Senior from her Care Agency called her. She will be back tomorrow and Friday so she will then have been with us for four days this week.
Our PR generally has Maureen in the palm of her hand but yesterday she was sent to Coventry during the early part of her shift. Maureen ignored her greeting when she walked in the door and appeared to be sulking during the early part of her shift. When I returned home after my shopping mission all was fine and dandy; with the girls busy as music played in the background. With five minutes of her shift remaining the PR enticed Maureen upstairs to make sure she was well clad for the rest of the day. How on earth she managed to get Maureen into sensible gear in that time I will never know – it can take me half an hour!
I haven’t a nickname for today’s Girl Wednesday. She used to be a regular until she changed her shift pattern. She is another excellent carer who always encouraged me not to pander to Maureen. I always welcomed such gentle guidance from an old hand. It will be interesting to hear what she makes of Maureen’s presentation today as she hasn’t seen her for a couple of months.
I clearly need to eat my word this morning after another challenging night. It was after midnight before Maureen dropped off. It looks as though she is getting used to Lorazepam – half a tablet no longer has the impact it previously had. I will get our GP’s advice on upping the dose. I will also contact our Key Worker to request a couple of Night Sits to see if that can help us through this challenging period.
My Admiral Nurse is expecting my phone call today and this will give me an opportunity to discuss the prospect of Maureen going into the Konar Suite – there are no beds available at the moment. I’m fully aware that Maureen might need ongoing medication and that could be the outcome of a stay on the KS. Despite my reservations about medication being the answer, I’m impressed by NAViGO’s attempts to help patients understand bthe:
Some positive news from last week:
- My reviewer tells me that Dale’s book: ‘The End of Alzheimer’s’ is worth reading.
- I am allowed to swim breaststroke.
- Riding my bike is good for my legs.
- We have taken several siestas and slept well over the weekend.
- The clearing up exercise after our extension has moved a stage further.
- My Admiral Nurse returns to work today after a week’s leave.
Sometimes you just need a break and two came my way on Friday. Firstly, my physiotherapist enlightened me about the benefits of swimming breaststroke, the only stroke I can do, and riding my bike. I had been under the misapprehension that both were not advisable following hip replacement. Secondly, my neighbour who is a scientist agreed to review Dale Bresden’s book. When I spoke to her yesterday she suggested that it might not be too late for Maureen to benefit from his thinking. I’m sure all of this news is helping me to sleep a little easier in bed at night, as is the thought that my Admiral Nurse will be available this week so that I can chat with her about my reservations about Maureen going into the Konar Suite.
From today I have decided to set some targets at the start of each week:
- To swim breaststroke at the Leisure Centre on two occasions.
- To resume attending Buddhist Meditation Classes on Wednesday evenings.
- To progress fitting vinyl flooring in our Sun Room.
- To read further chapters from: ‘You Are The Placebo’.
- To continue involving Maureen in personal care.
- To take Maureen out for a walk twice this week.
- To take Maureen clothes shopping.
- To involve Maureen in further household tasks.
I will review progress next week so in future, Positive News will be the focus on Monday’s – a Jungle Book approach to life:
Today’s lesson from Kelsang Dekyong:
We didn’t make it for a swim yesterday as Maureen rested for large parts of the day. She seems exhausted at the moment and has slept well through the night. If this warm spell continues a walk on the beach beckons after breakfast this morning.
Maureen is very sad today. When I asked her what was wrong she says she ‘wants to go home to be with her family’. Then she says ‘they would probably be too busy to talk to me’. My guitar playing brother in law always points out that how busy people are is a matter of choice. I wonder if he’s got this one in his repertoire:
Maureen is very shaky this morning. She is more confused than ever and unsteady on her feet. A small amount of lorazepam has given her much needed rest and some respite from her delusions.
I’m currently reviewing our situation.