In the week that I have mentioned the work of Dr. Dan Nightingale, this song gives me room for optimism. Maureen had never heard of Christie Hennessy until some time after her diagnosis of dementia. If she can sing along with Christie, almost word perfect surely I can help her to remember that she did everything she could when her child died almost 60 years ago.
I’m hoping that emptying her bookcase in the dining room will give Maureen purpose this morning. This will then enable us to strip the remaining wallpaper so the room can be skimmed in a week’s time. The only wallpaper that will remain in the dining room is the wall that was decorated by Maureen several years ago.
As we labour this morning I will remind her who taught her to decorate: her granddad. She has such beautiful stories to tell of her childhood that such memories might help her to cope with her grief.
I have just phoned the Konar Suiteto speak to a Nurse to check whether my support to Maureen has been appropriate. She was in floods of tears a short while ago because ‘they had found a dead baby’. This was the second time this week that she has been overwhelmed with this thought.
When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’. Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming. She didn’t know that Maureen’s second born had died at three months when she was twenty-one. I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.
Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7. This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house. She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution. Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a replacement for a young child who never made it to his first birthday.
If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life. She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!
Footnote: Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!
Some of my cyber friends have pointed me in the direction of Dr Dan Nightingale. From my limited understanding of his work, it appears there may be an alternative to Trazodone: the medical solution to Maureen’s presentation.
Maureen’s behaviour became extremely challenging yesterday afternoon when she took off saying ‘she didn’t like it here’. I followed her around the local area listening to a familiar tale of me ‘robbing, deceiving and abusing her’. At one stage she confronted another woman who I had never seen before about her involvement in the affair. The positive about this incident was that she got into the car after reprimanding this poor woman. An hour later, it took the involvement of two support workers from the Home Treatment Team to persuade her to leave the car and enter ‘her house that I had stolen’.
Maureen was all sweetness and light when the HTT was here. Following their departure, she sang along to YouTube beautifully for a while before becoming distressed about a strange man in the house. My attempts to reassure her that she was safe had no impact so I gave her a cup of tea induced with a small amount of lorazepam. I managed to encourage her to ‘rest her eyes’ but unfortunately by midnight she was on the attack again with a short spell of vindictiveness and sarcasm.
It is not easy to switch off and go back to sleep after seeing your wife out of control and looking menacing with a cheeses board in hand. Therefore I’m drafting this post as one ‘o’ clock appears on my VDU.
I’m hoping that Dr Dan will be the man to help Maureen never forget who I am and stop accusing me of being responsible for events in her life that have no connection with me.
I’m also hoping that my Buddhist teachers will help me to stop self-cherishing and recognise the spiritual lessons from this journey:
What a shame I can’t make the opening session of this Term’s meditation classes in Grimsby tonight!
Update at 4 ‘o’ clock: Maureen wants ‘Mr Fish’ our Key Worker here to lodge a complaint that she hasn’t any underwear and the toilets are filthy. Having listened to her diatribe for about half an hour I contacted Single Point of Access so that she could request a visit. She wouldn’t take the phone to speak to them directly so I held it close enough for them to grasp her reality about ‘the state of play in this hospital’. I expect a call from ‘Mr Fish’ shortly after he is on duty this morning. I’m pretty sure he will press ahead with a Best Interest meeting so we can all get round the table to discuss how best to respond to Maureen’s fluctuating presentation.
Further, Update at 6 ‘o’clock: I have just heard a very articulate presentation from Maureen on why she no longer needs to be in this ‘Care Home’. She makes the point that there is no incentive for them to send her home. From her perspective, her parents are too intimidated to assert that she is well enough to go home. She says Care Homes are only interested in making money and will keep her here forever. From many of the things that she said I thought she had been in touch with Kate Swaffer to confirm her thesis on ‘Prescribed Disengagement’. I just have a feeling that we might be able to harness Maureen’s fighting spirit to good effect and ‘rementia’ offers a way out of this very dark Tunnel. Only time will tell if Dr Dan really is the Man!
Our builders informed me yesterday evening that they are going to work the next two weekends to finish Val’s Room ahead of schedule. Their support to us during the nine weeks they have been on site has been exceptional and this latest move is typical of a dementia friendly business. Maureen asks every day ‘when that man is going to clear his mess up’ but as soon as she sees him and his colleague her face lights up because she knows her interaction with them is alway’s positive. I’m sure we will both miss them when their work is done!
I’m working both overtime and night-shift at the moment. Maureen caught me out the other day: quite rightly pointing out that certain areas of the house were far from clean. I hastily tidied up the bathroom and the utility room before she would use the facilities. Then she told me that I ‘shouldn’t have to be doing such work as it was the responsibility of the cleaning ladies’. She is right and it is time to employ someone for a few hours a week to help keep the place clean.
Monday’s night-shift was long and arduous. Maureen was armed with a small metal table when I returned from one of my frequent trips to the bathroom. It would have come flying in my direction if I hadn’t whistled as I entered the lounge. My call sign saves my bacon on many an occasion: thank goodness my dad taught me how to whistle. How ironic that a few hours later Maureen thought I was her dad and asked me questions about his parents that I had to bluff on, as I had never met them!
Some of my cyber contacts have suggested that coaching is essential as Maureen’s presentation becomes more complex. Although they often comment on my blog, along with helpful references, they are far too busy to Skype. Therefore I have decided to revisit the issue of support from the Alzheimer’s Society: this isn’t a time to reduce my options for coaching!
I have an appointment with Maureen’s GP this morning to discuss her reluctance to take medication that was prescribed following her stroke. I’m hesitant to give her tablets covertly because if she caught me out it would feed her paranoia that I’m trying to get rid of her.
Our Key Worker is popping in this afternoon so that he has an up to date picture of Maureen’s presentation. This will also provide an opportunity to open discussions on the appropriateness of our current Care Package.
Things flared up again yesterday for the second Sunday in succession. The early part of the day had passed without incident, apart from Maureen having no idea who Girl Sunday was. On Saturday she had asked the same carer if she was my wife!
Our adventure started in the afternoon when Maureen became concerned about the whereabouts of Granddad. I suggested that we should go and look for him, as this gave me a welcome opportunity to ease her out of a dressing gown that she had been wearing for 48 hours. Once she was suitably attired we traced our steps of seven days ago. Although, we didn’t quite make it to a Close where she had made such an impact the week before.
We had a lovely walk, chatting about all sorts of things, for about an hour. Maureen seemed in a hurry and I hoped that explained her hunched stature as we made our way back home. Once in the house, Maureen became convinced there were dogs in the rear garden and ran off through the front door.
I trailed her around the streets for some time as she tried to get away from danger. Once we neared home, I edged her into the car as a safe haven from canine attack. McDonald’s, once again, was a game changer: with a Chocolate McFlurry easing Maureen’s sore mouth and shifting her reality.
When we returned home, Maureen danced and sang to Nat King Cole as I cooked a late evening meal. She was in great voice and the number of songs she knew was amazing. Shortly after we had finished eating, Maureen made her way upstairs and eased her tired body into the marital bed. I joined her a short while later leaving the kitchen looking like a bomb site. After reclaiming my pillow -she had all three- we both had a good night’s rest.
I’m hoping that things will settle down this week. We have familiar Girls on duty, apart from the weekend, and Mcdonald’s is only ever a stone throw away!
Just before posting I’ve played an Ace by telling Maureen that her sister will be able to come and stay with us in the newly built Sun Room. If her brother and his wife follow up I know that we will see a very different Maureen. She is delighted with the prospect of the family she misses so much being reunited in just a few weeks!
I find this teaching particularly helpful as Maureen and I travel on this journey together. I couldn’t think of a better place to start my new approach to posting on Sunday’s.
I have decided to resume posting at the weekend. On Saturday’s I will post music that has had great resonance for us both during the week. Sunday’s will be Buddhist teaching from YouTube that has helped me to clarify my thinking during the previous seven days.
I am starting with Steel Away as I always play it when we want to remember Maureen’s daughter. She once asked me ‘why was I singing Paddy music?’ The above version is a rare music video and honours our pledge to remember a beautiful woman and never say we have lost her!
When Maureen told me she was constipated yesterday she said ‘the Lady at the chemist will know what to do’. Such responses from my dear wife confirm that she can still remember some things. What she will never forget is how she is treated: as David Sheard says ‘feelings matter most with dementia’. Whenever we call in at our Local Branch of Lloyds she is treated with dignity and respect by all members of staff. As we were leaving the pharmacy yesterday Maureen to me ‘how much she liked the lady, and how helpful she always was’.
The other person who Maureen never forgets is our Key Worker. She never remembers his name: he is currently Mr Fisher. However, as soon as she sees him her faces lights up as she knows he will always treat her with compassion, dignity, and respect.
It is possible when Girl Fridayis here today Maureen will forget who she is. She might even ask her if she has had the baby. She could even be hostile towards her seeing her as ‘the other woman’ – it wouldn’t be the first time. However, none of this will be phase Girl Friday. She knows exactly when to keep her distance: she would never have woken up with a shiner this morning!
Today is the last working day of Girl Friday* before she goes on Maternity Leave.
Without Girl Friday I doubt Maureen would still be here.
She would have gone into a Care home a long while.
I hope we are able to give you a good send off this morning Girl Friday.
You know Maureen: your care for her has always been person-centered.
I will always be eternally grateful for your wisdom and loving care for Maureen.
I will never forget what you have taught me about dementia.
*Girl Friday has also been Girl Tuesday this week. In the three years she has been caring for Maureen she has worked on every single day of the week. She will understand that constipation will be playing havoc with Maureen’s presentation at the moment. If my phone call to Single Point of Accessdoesn’t result in a prompt response we could both be in for a rough time this morning, which will be nothing compared to what Maureen is currently going through!
Update; By 7 am we’ve both spoken to a Nurse we have the gear we need and expect movement by noon.
Our builders informed me yesterday evening that they are going to work the next two weekends to finish 
Dementia: Sharing The Good Times 