Yesterday’s aspirations to have a Lazy Afternoon were completely fulfilled with us both enjoying a good siesta. Our problems came late evening when boredom took its toll: Maureen freely admitted that she sleeps when she is bored and I confessed that I eat.
Dozing and comfort eating are not the solution to dementia; although they have their place. I’m hoping that taking part in a new course the will help me to review our direction on this hazardous journey and address the issue of boredom.
I’m hoping for a ‘Lazy Sunday Afternoon’ today after spending a large part of yesterday completing my repairs to the fence.. Maureen spent most of the day on the sofa as I responded to my neighbours call to replace a fence panel that I had taken down earlier in the week. Lots of things went wrong with what should have been one of those ‘half an hour jobs’: Mike’s knees gave way and this left me without his much needed wood cutting skills. Therefore, it was mid-afternoon before it was safe for Rusty, Mike’s dog, to return to the garden and not be at risk of escaping.
In retrospect I should never have tried to repair the fence – we should have left it to a handyman. I have lost count of the hours I have been involved in this time consuming project in the last week. It wasn’t as if we couldn’t afford to call someone in to do the job and I have never been good with wood as I proved once again..
Maureen never bears any grudges when I stray into pointless pursuits and her dementia means that I can get away with misdemeanours without fear of recriminations. However, I know that despite her generosity my version of ‘You Are My Sunshine’ this morning was a poor substitute for Merlins Keep’s version. There may be a second chance for my cunning plan tomorrow when three of the band perform as Shindig late afternoon and might just be prepared to add the song to their set.
I think my aspirations for a ‘Lazy Sunday Afternoon’ might be a tad optimistic as Maureen is currently in floods of tears as ‘nothing fits and she wants to go home to her mum’. However, at leaste she won’t have to worry about our neighbour’s pet straying into our garden as she remains frightened of dogs after seeing one attack her mum..
If the Small Faces were at the Folk Festival today I would be requesting this number:
We tried something new last night and both seemed to enjoy the experience: with a King Sized Bed a foursome was no problem. The only difficulty that emerged was when I reached out to hold Maureen’s hand around 3 am and came across her bear. A further lunge led to me finding my own bear residing further down the bed. It was then that I remembered that we had both joined up in the marital bed around 11.30 pm and not returned the bears to their den before falling asleep almost as soon as our heads touched the pillow.
We had another positive day yesterday settling nicely into a sensible routine. When I returned from the Leisure Centre Chloe was in ‘hairdresser mode’ finishing off Maureen’s hair. I was charged with paying up after listening to Maureen’s frustration that about how long things take now she needs others to help her shower and wash her hair.
The afternoon siesta followed my Friday special of home-made fish and chips. The local chippie cannot compete with my potato wedges (cooked in coconut oil of course) and baked haddock in cheese and leek sauce. Our afternoon siesta went well with us both getting a couple of hours rest.
We had a lovely walk in the evening sun walking taking in the prom and keeping an eye on the night spots in the area. On our return we watched the goggle box for a while and Maureen rested her eyes on the sofa. I turned in around 10 pm and left Maureen too it until I heard her stirring via the Baby Monitor an hour and a half later.
When your wife has dementia her ‘no’ often means ‘yes’ so I joined her in the marital bed obviously leaving the bears in place in case their version of events was ever needed. It’s the Cleethorpes Folk and Cider Festival tonight: Maureen was delighted last year when Merlin’s Keep sang ‘You Are My Sunshine’ – a song her dad often sang to her when she was a small child.. I might just have a word with them to see if they will sing it as a request tonight: that would be a lovely way to end the evening!
Maureen had what is common parlance following stroke a ‘Duvet Day’ yesterday: all she wanted to do was sleep. In her case it was a sofa day and the ‘bear facts’ as you will see from the photo below were we left the poor things too it. Just for the record my bear carries my name and is of course on a blue pillow: Maureen’s is ‘Nana’s Bear’ – both were bought for us by Denise, her late daughter. When Mrs Dementia is around she often removes my bear from the scene along with my pillow!
Maureen had what is common parlance following stroke a ‘Duvet Day’ yesterday: all she wanted to do was sleep. In her case it was a sofa day and the ‘bear facts’ as you will see from the photo below were we left the poor things too it. Just for the record my bear carries my name and is of course on a blue pillow: Maureen’s is ‘Nana’s Bear’ – both were bought for us by Denise, her late daughter. When Mrs Dementia is around she often removes my bear from the scene along with my pillow!
If I try to sleep when she is safely tucked up on the sofa I take to the spare room where the Baby Monitor is plugged in as this alerts me if she stirs. I heard the familiar ‘is it time to go to school yet’ as dawn broke but apart from that we have both slept relatively soundly.
I have a couple of options this morning I can either go to the Leisure Centre or accompany two friends for a late breakfast. Maureen has talked about having one of her ‘Pamper Days’ with Chloe (Girl Friday) this morning and I’m hoping that things go to plan. Now there is a really dangerous thought with dementia the elephant in the room!
Today’s Good Music page is reflective after yet another night in the spare room.
Maureen and I had a lovely day together yesterday and this morning has started on a positive note. We structured our day really well yesterday and reaped the benefit. Leaving the remaining work on the fence to a handyman helped the morning to get off to a good start: he will finish off my endeavours in the next few days. This meant I could ease my aching bones in the Spa at the Leisure Centre while Gail kept Maureen entertained.
Gail and Maureen always seem to ‘have a ball’ together: ‘Girl Wednesday’ is a great deal of fun and their friendly banter is often aimed at me. Just for revenge I created mouth- watering aromas with a vegetarian curry to send Gail off drooling over what she was missing. If she behaves today, she is I may give her a sample of what she missed.
Our afternoon siesta followed my gastronomic delight: Maureen rested for a couple of hours while I took a breather. Following tea I moved into my D J mode and Maureen sang like a lark for a couple of hours. We even phoned up Maureen’s aunty Clarice to play ‘Spot That Tune’: she loved hearing Maureen in jubilant form after experiencing Mrs Dementia in full throttle the previous afternoon.
As the rain eased off around 8.30 pm we took the evening air to blow away the cobwebs. On our return we watched a couple of episodes of ‘Open All Hours’ on YouTube. I was dropping off shortly after 10pm but Maureen wanted to watch a little more of Arkwright’s attempts to sort out his love life and eventually joined me in bed an hour later.
I was awake shortly after dawn this morning and got up after providing early morning drinks. Around 6 am Maureen joined me as I sat at the keyboard wanting to share her fears and anxieties about her poor memory. As always I have tried to reassure her about the progress she continues to make. I am hoping that I have steered things in a positive direction with some ideas about how to rebuild her confidence in her ability to recollect.
One of the things we need to do is replicate yesterday’s structure to our days. I am hoping that some form of cognitive stimulation in the evening prevents Maureen’s routine of bedding down on the sofa after our evening meal. All I need to do is work out what might go down well on the night and accept that flexibility is the key to this journey.
Yesterday was very challenging with marked fluctuations in Maureen’s presentation; particularly her mood. She slept for most of the morning and just about raised herself from the sofa before Charlotte our carer left. Clarice her aunty visited in the afternoon and I left them too it for an hour or so.
We gave Clarice a lift home calling in for some bedding plants on the way. Maureen became very hostile as Clarice and I gathered up our purchases and attempted to round Maureen up from wandering in the vicinity of the retail outlet.
Maureen declined Clarice’s invitation to have a cup of tea at her house. She wanted to accompany me to the wood yard to collect further items for repairing the fence. The prospect of more work on the fence led Maureen to show her frustration and remonstrate about me repairing our neighbour’s fence. It took a lot of time and patience to persuade Maureen get back in the car for the homeward journey.
Once home Maureen put her arms around me and thanked me for repairing the fence. After our evening meal Maureen became very sad about wanting to go home and missing her family. She was very distant for the remainder of the evening but surprisingly ‘livened up’ when we went to bed.
I think it is Teepa time again for yours truly. Her explanation of vascular dementia might just help me to understand a little more what might be going on here. Teepa also has some tips on how to handle wanting to go home and I’m hoping that I can find a post by Amazing Susan so I can revisit this issue tomorrow.
‘Mrs Dementia’ was rampant at 3.3o am this morning as Maureen thought she had been left behind as all the other residents in this Care Home had gone out on a trip. No matter what I said I couldn’t shift her from her fixation as she tried to put her imagined discrimination into context. She wondered if they hadn’t taken her because ‘her clothes were so shabby or because she had been a bad person’. The attack eventually focused on me ‘had I bought her; if I thought she was going to stay here I was wrong’. Even my teddy bear was removed from her bedroom and flung onto the bedside table beside me in the spare room. When I look back I had reaped my just reward from a selfish day yesterday.
I got carried away yesterday and almost forgot Maureen’s condition. For most of the day I neglected her needs as I pressed on repairing fence panels in our back garden. I chose to ignore her rampant confusion as she wandered around between our garden, the front pavement and our neighbours drive. She clearly hadn’t a clue what was going on even telling me that the police or a relative had just called in and I had missed their visit.
My neglect yesterday wasn’t restricted to my wife: it extended to Mike my neighbour. He can hardly stand due to a chronic condition but yet again I cajoled him to assist me in my endeavours until he ‘retired hurt’ exhausted. Kate his wife and her dog also entered the fray keeping Maureen safe as she wandered back and forth trying to make sense of what was going on.
If Maureen had been in a Care Home yesterday I would have been ‘up in arms’ about the behaviour of her carer (me) and complaint would have been filed: I would have been asserting that they needed to be put in Special Measures. Once gain I am tempted to visit a tattoo parlour and get them to put on my forehead and hand Maureen has dementia.
One of the few benefits of dementia is that I may get away with my selfish behaviour yesterday: with luck Maureen will have forgotten my neglect of her needs. From now on I need to have a new mantra; ‘potter or pay-up’. The time for DIY has gone; replacing a light bulb is fine but significant fence repairs are no longer viable – Maureen has dementia.
Two immediate priorities this morning: concentrate on being a good Tea Boy hopefully ‘at my new station’; seek out Mike and Kate and eat humble pie.
My meeting with Mel my Admiral Nurse on Friday reviewed my approach to Maureen’s current presentation and possible approaches to resolving my concerns:
I Don’t Know Who You Are
This is one of the issues that I find the most challenging as it can arise at any time of the day. It is of particular concern at bed-time or during the night when I’m told in no uncertain terms that i don’t belong in Maureen’s bed. This happened again last night around 1 am where i had to retreat into the spare room before I could settle Maureen from roaming around the house before she felt that she had somewhere that was safe for her to sleep. I intend to persevere with attempting to sleep beside Maureen for another week and withdraw to the spare room at appropriate times. I will also continue to mention in passing that we are husband and wife; possibly using the Wedding Album as reinforcement. It will also be interesting to see Maureen’s reaction if I join her in bed when I arrive as ‘Tea Boy’ when I bring her the first cuppa of the day: just did it and received a warm welcome. I realise I have to be a gentleman as Maureen thinks we’re only engaged!
Individual Cognitive Stimulation Therapy
Maureen is often saying that no-one has told her how to get her memory back. Mel has confirmed that Maureen is eligible to be placed on the waiting list for ICST. At an appropriate moment I will suggest that Maureen signs up to see if ICST is something that might be helpful to her.
My Daughter’s Birthday
It is Lisa my eldest daughter’s birthday mid-June and I want to stay overnight in Coventry to be with her on a special day and catch up with other members of my family. I intend to make this trip alone so I can have some quality time with my own family. It would be unfair to subject Maureen to such a busy schedule and carers along with her sons will ensure her well-being during my absence.
The following two issues were not discussed with Mel but are real positives for the week ahead:
Leisure Centre
I have begun to use some of the exercising equipment in the Gym to strengthen my upper body and my shoulder seems to be improving. I am also benefitting from the reopening of the Health Suite after refurbishment and enjoying the Spa and Sauna facilities once again.
Sleep
It is early days but my sleep pattern seems to be improving at long last. I am hopeful that a simple breathing meditation and not absorbing Maureen’s hostility continue to help me get back to sleep after early morning incidents.
It is rather ironic that as Dementia Awareness Week comes to an end that yesterday I found myself hurriedly trying to bring some unexpected visitors up to speed The nature of our relationship made my intervention relatively simple as we had only met our guests earlier in the week However, we had probably both overlooked that they were ‘on a mission’ and keen to share the benefits of their faith and leave us with the Book of Mormon. After a while I could see that Maureen was reeling from the flow of information and sentiment so I decided to invite one of them to help me tidy up the kitchen.
It must be really hard for occasional visitors to see beyond Maureen’s Hostess Mode. They never see her frustration and exhaustion following their visits. It is also very difficult for me to encourage them to back off when they and she are in full flow. What I was able to do yesterday was without fear of recrimination: something not so easily done with family members who get carried away when they are in Maureen’s company. Perhaps the time has come to have some open conversations and share the 12 Helpful Hints from an earlier post.
I intend to take a low key approach to today and see what Maureen presents. It will be interesting to see what she remembers from yesterday: I have purposely left the Book of Mormon around. It’s possible that she has forgotten her behaviour at 2.30 am when she returned from the bathroom, after getting lost on the way, complaining this was an ‘a******* sort of a place with no names on the doors’. This was an unusual turn of phrase expressing her concern about not being able to find her way around and having a ‘stranger’ in her bed. I removed myself to the spare room to bring to an end Maureen leaving and returning to the room and switching the light on and off – presumably to see if ‘a stranger’ was still in her bed.
There are many occasions when I wish I had someone to pull me to one side and tell me where I might back off or try something a different. Now I wonder if it is time to top up Maureen’s tea pot: always a safe staring point on any morning.
The wedding ring is now safely (I hope) back on Maureen’s finger. We collected the resized ring from the jewellers yesterday. Maureen is still not sure it is the correct size and we will need to keep it under review so she doesn’t take it off and put it in a safe place; where hopefully her engagement ring resides.
I am hoping that wearing a wedding ring will remind Maureen that she is my wife. It may have helped last night as we shared the marital bed until I got up at 5.30 am. I have already pulled down the continental quilt in the spare room so it becomes that rather than ‘my bedroom’. It is possible that my ideas around the Wedding Album may begin over the weekend, it depends how things pan out.
I had a positive meeting with Mel my Admiral Nurse yesterday. We are not completely comfortable with the ‘going with the flow’ approach to dementia. We favour a ‘trigger-happy approach’ by trying to look behind aspects of presentation. So we see my taking to the spare room only as a last resort when it is necessary to avert distress.
There is little doubt that Maureen is becoming increasingly confused. Yesterday Chloe, our longest serving carer, said she frequently asked her if she knew anything of her whereabouts. Maureen also mentioned to me that several carers had been assisting her during the course of the morning. The apparent progression of Maureen’s dementia means that I need to keep the 12 Helpful Hints from yesterday’s blog to the forefront of my mind as I attempt to minimise distress and try to help her remember who I am.
