Sunday was a fabulous day from beginning to end.
Early on I met a Shonie Carter at the hotel recovering from the previous night’s bare knuckle duel:
By 11 am I was accompanying my Granddaughter on her Karaoke Machine singing an Adele number:
After a lovely lunch prepared by ‘Adele’s mother’ I was speaking Punjabi with guests at a wedding reception at the Royal Court:
By 4 pm I was in the company of my younger sister and her son who assured me Maureen was still his ‘Favourite Lady’.
As Arsenal booked their place in the Cup Final I met my Great Nephew for the first time.
By 7 pm I was in the company of my sister in law chatting about life when your loved one has dementia.
An hour later I was at the Standard Sweet Centre topping up on Asian food.
Just before I turned in I managed to catch up with Shonie again for a fascinating insight into an interesting life!
This is a very early morning post prior to my departure from Coventry. When I get home I will take advice from a number of quarters before I decide whether to bring this period of Respite to an end.
I decided to head South rather than North yesterday. This meant forgoing the tranquility of the Buddhist Centre in Pocklington for an opportunity to catch up with family in Coventry. As soon as I set foot in ‘The Sanctuary’ I knew I had made the right decision. Just the smell of the place and seeing engineers at work brought back such happy memories of my days on the shop floor in the car industry. As always I got wise counsel from my brother in law as he took time out from his hydraulics business. The loud bang as my nephew blew out part of a component that was in for repair reminded me of the narrow escapes I’d had in my days as a manual worker.
After checking into the Royal Court Hotel I popped in to see my brother in his Nursing Home. I found him in his favourite chair in the Dining Room. He has been on Continuing Health Care for years which gives you a measure his Alzheimer’s. It took me a while to get him to smile and that was his only meaningful exchange during my visit. He seemed to be preoccupied with his hands: making movements as though her had a hair caught in his fingers. We sat together for over half an hour with only pop music in the background interrupting the silence.
Mum greeted me with her usual ‘have you to come to take me out’ and I did. It was such a lovely day as we travelled to Coombe Park as mum continued with her normal reaparte how many cars were on the road. Her vascular dementia means that conversation is often very limited although she did ask me where my wife was.
We sat for over half an hour and shared our customary ‘99’. She seemed rather tired on our return to her Care Home almost falling asleep as she reclaimed her chair and began to comfort her baby doll. As I was leaving I assured her I would be back soon to take her out again.
As I drove back to my hotel I though about the lack of resident activity in mum’s Care Home and my brother’s Nursing Home. The majority of inmates in both institutions were slumbering in chairs some were on them moving around my brother’s place; all were stationary in mum’s. My thoughts then shifted to Maureen reminding myself of the news that they were ‘not letting her out in the garden because they feared they would not be able to get her back in’.
I managed to switch off a little as I enjoyed the warmth of the Spa and Sauna when I returned to Royal Court. As always I found people to talk to and had an interesting conversation with an IT Engineer and a couple from Latvia. The conversation was also in full flow as I joined my sister and her husband – the owner of ‘The Sanctuary’ – for the second half of the Semi-Final of the FA Cup and a lovely evening meal.
Today I have another busy day with an early morning visit to my eldest daughter and her family. I then hope to find my way to see my younger sister and her son at her home in Warwick. There are other possibilities if time is on my side.
Unfortunately, the news from Homefield House isn’t so good this morning. Maureen had appeared to be settling down but last night she refused to go to bed. If she doesn’t get some rest soon then things will turn from bad to worse. How fortunate that I feel refreshed from this short period of Respite and ready to resume my role as a supportive Care Partner to my dear wife. The issue of how I can continue to have Respite when I need it can be parked until we meet with our Key Worker a week on Tuesday.
Maureen has now spent her second night at Homefield House. It was no simple matter to get her there: it was 4 ‘o’ clock on Wednesday before we were able to persuade her to put her foot in the door. Initially, she appeared to settle well then her behaviour during the early hours became extremely challenging and disruptive to fellow residents.
The phone lines were busy yesterday as we tried to find a way of minimising Maureen’s distress and enabling me to have a much-needed break. At one stage it looked as if she would need to be moved to an Enhanced Unit where staffing ratios would have been more supportive to her needs. However, I responded positively to the suggestion to pay for some one to one support in an effort to help her settle. The news this morning is slightly more positive with Maureen being abusive but less aggressive during the night and eventually going to bed at 2:30 am.
I am getting wise counsel from a number of quarters during this challenging period in my life. It is reassuring that staff from Social Services, Admiral Nursing and the Alzheimer’s have all played a significant part in helping me to keep my cool as we tried to find a person-centred approach to our dilemma. I always know that empathy and skilled professional help is available at the end of the phone whenever I need to mull over my thinking.
I’m hoping that Maureen will continue to settle for the remainder of the week and I can make my informal retreat at the Madhyamaka Buddhist Centre for a few days from Sunday. How profound that the focus of their meditation programme is about to be:
|Buddhist Meditations for Challenging Times
New Term Starts w/c April 23rd
Hardly a day goes by when we’re not experiencing some kind of challenge, whether it’s falling out with a friend, getting sick, losing our job, or feeling overworked and over-tired. When we experience such adversity how should we respond?
This series of classes based on the book How to Transform Your Life by Geshe Kelsang Gyatso will explain practical methods to maintain a positive and peaceful state of mind in the face of adversity. In this way, we will be able to meet all challenges, great and small, with confidence and wisdom.
Maureen’s Occupational Therapist phoned with some good news yesterday:
Two weeks to go to until Easy2bathe is here.
An additional stair rail will be fitted within a month:
Then early this morning I got even better news: Maureen has a cold:
I heard incessant sneezing from downstairs shortly after midnight and realised Maureen had a cold. What a relief that there was a probable explanation for her bizarre behaviour last night when she called me all the ‘names under the sun’.
Maureen remained on the attack this morning accusing me of stealing all of her belongings and keeping her here against her will. Shortly before 5 am I informed Single Point of Access that I was exhausted and will attempt to place Maureen in Respite Care this morning.
Following the Best Interest Meeting, I clarified my options with our Key Worker. My need for a break was fully explored at the meeting and the only option at the moment is to put Maureen into a Care Home for a short period of time. The good news is Homefield House appears to be somewhere that could meet Maureen’s needs: the even better news is they have availability. The one remaining issue is how to get Maureen there with a minimum of distress: thank goodness Girl Wednesday has trodden that path with me on a previous occasion!
We’re struggling this morning or as my dear old mum would say ‘we are in the wars’. Maureen is feeling dizzy and is very confused. She woke at 3 ‘o’ clock concerned that she was late for an appointment. Two hours later she was wondering if her dad had gone to join her mum in Nottingham. Early morning confusion is nothing new but she is also feeling generally unwell and dizzy. If she doesn’t feel any better when she next wakes I will seek medical advice.
I’m far from in good form myself with pain in my legs and back continuing to interfere with my mobility. Unfortunately, Maureen and is picking up on my mood without understanding the reasons for my grumpy demeanor.
We will continue to be in the wars here unless I change my battle plan. Now the Best Interest decision has been taken and Maureen will be staying at home I have to get my act together. I need a Simple Plan that is based on a realistic appraisal of our situation. I have to move out of denial and make realistic decisions that are attainable.
My first priority is to get out of pain by carrying out the exercises the physiotherapist gave me over two months ago. Once the pain subsides I hope to be able to think clearly about how to simplify our lives and stop wasting time on trying to recreate a former lifestyle. Before I undertake any further activities I need to ask a fundamental question: is this a sensible pursuit at this moment in time?
There are two immediate steps I’m going to take on my Simple Plan. Firstly, to only post on this Blog on Monday, Wednesday and Friday’s for a while. Secondly, to review my approach to gardening by buying plants rather than attempting to germinate them from seeds. Hopefully, as my pain subsides I will make real progress on simplifying our lives.
Update: By 8 ‘o’clock Maureen seems fine as we take breakfast looking out of our patio doors onto our back garden. We have decided to spend more time in this part of the house looking at our colourful cottage garden rather than the road and bungalows that are the prospect from the front of our house. As my friend Kelsang Dorde (pictured below) from the Buddhist Meditation Centre at Pocklington would say: it’s a no brainer!
The visit of my eldest daughter and her family yesterday gave me a reality check which I turned into a rude awakening:
- I can no longer be the perfect host and provide homemade food for visitors.
- I am no longer able to keep the house clean and tidy.
- I need to do something about the constant pain in my back and legs.
- I should not be having discussions with builders when we have visitors.
I will be apologising to our visitors this morning for getting it wrong yesterday. They had told me ‘not to bother about food as they would go to the chippie’. I had soldiered on in denial trying to return to the good old days. To make matters worse I then rushed into discussions with a builder about making our house suitable for our needs.
Our Key Worker has arranged to visit in a couple of weeks to review our Care Package. I need to think very clearly about the help we now need and how our house could be made more dementia friendly.
The Easter holidays will need to be a staycation: Maureen current energy levels and my aching body do not need long car journeys. If we have further visitors over the holiday period I need to remind myself of yesterday’s ‘rude awakening’ and not get carried away trying to reconstruct the good old days!
Update: Two hours after I posted the above Maureen kindly brought me a mug of tea. It was rather strong with two tea bags in the mug and an additional four on the tray. This is the first time she has boiled the kettle of her own volition for some time and is a further reality check on the progression of her dementia.
As Care Partners we are advised to distract and redirect our loved ones whenever they are distressed. Girl Friday always provides the necessary now as she blooms in her first pregnancy. Baby talk is thick in the air when she is around to take Maureen’s mind off packing to go home or her latest focus. Fortunately, my eldest daughter and her family are arriving at noon and that should shift Maureen from her preoccupation about someone falling down the stairs and needing help.
It is difficult to know if the accident on the stairs is a dream or hallucination. My guess is that this focus has come from the visit by the Occupational Therapist earlier in the week and the impending stair rail.
Music continues to be a regular tool of distraction and if I put on ‘the little girl’ Maureen is transfixed:
I hope to contact Caoimhe and tell her how much we enjoy listening to her singing. The story of Grace is new to us both as we know little of this period in history: rather strange when you consider our surname!
Early yesterday afternoon Maureen said: ‘you have locked me in again and I will hate you until the day I die’. This was not the first time that she has reacted strongly to finding the key turned in our front door so I promptly opened it and let her go. I hurriedly got on my bike and followed her at a distance watching her talking to a neighbour who redirected her back home. On her return, she was a different woman: I was her friend and she was feeling liberated that she had been out by herself.
Later in the afternoon, I took positive risk taking to another level. Rather than follow her as soon as she ‘escaped’ I gave her 15 minutes as I nervously sat on the edge of my seat counting the seconds. As I got on my bike she waved to me as she turned into a nearby close. I followed her at a distance silently encouraging her as she found her way home. When we caught up with each other on our front drive I hugged her with congratulatory tears in my eyes – she thanked me for being such a good man. She told me that she had waived to a man with white hair because it might just have been me!
I haven’t gone native or ‘lost it’ in my approach to Maureen’s liberation. It is something I have discussed extensively with professional staff and am using my judgement as I open the doors to freedom for my wife.
I also raised another important issue with my Admiral Nurse when we met yesterday. I wanted to place Maureen within Teepa Snow’s GEMS model. I eventually concluded that if she was anything she was Emerald:
‘Emerald ~ Green and On the Go With a Purpose ~ Naturally Flawed
- Sees self as able and independent, with limited awareness of changes in ability
- Lives in moments of clarity mixed with periods of loss in logic/reason/perspective
- Understanding and use of language change: vague words and many repeats
- Cues and support help when getting to/from places and doing daily routines
- Awareness of time, place, and situation will not always match current reality
- Strong emotional reactions are triggered by fears, desires, or unmet needs
- Needs to know what comes next: seeks guidance and assistance to fill the day
I am flawed; it is part of being a natural emerald. I tend to be focused on what I want or need in this moment and may not be aware of my own safety or changing abilities. I can chat socially, but I typically miss one out of every four words and cannot accurately follow the meaning of longer conversations. I won’t remember the details of our time together, but I will remember how your body language and tone of voice made me feel. I may hide or misplace things and believe someone has taken them. My brain will make up information to fill in the blanks, which makes you think I am lying. If you try to correct me or argue, I may become resentful or suspicious of you. I am not always rational, but I don’t want to be made to feel incompetent. My brain plays tricks on me, taking me to different times and places in my life. When I am struggling, I may tell you, “I want to go home.” To provide the help and assistance I need, you must go with my flow, use a positive, partnered approach, and modify my environment’.
Teepa is an amazing woman who encourages Care Partners to focus on capabilities and I’m sure that with careful positive risk taking Maureen will continue to shine!
One week has passed since the Best Interest Meeting that considered Maureen’s future care and accommodation. The decision for Maureen to stay at home was one that I welcomed and I doubt there was any dissension in the room. Unfortunately, it is no simple matter to secure wall to wall care for 72 hours to give me long weekend breaks once a month. I have now accepted that my plans to have three nights away in a weeks time are not going to happen so I will be seeking additional carer sits with known faces from next week.
Sorting out my long weekends is going to take some time but there have been some really positive developments this week:
- Occupational Therapy involvement is going to be ongoing with a hand stair rail and aids to make bathing easier already on order.
- My meeting with a Carer Support worker went well yesterday. This emotional and practical support will now be ongoing.
- This morning will be the first of fortnightly meetings with my Admiral Nurse to review how things have gone and plan ahead.
There is no doubt that our Multi-Disciplinary Team has been very thorough in attempting to provide support that is appropriate to Maureen’s current presentation. We are very fortunate to live in an area of the country where there are genuine attempts to support carers and their loved ones. Once again I count my blessings over our decision to move to North East Lincolnshire!
It’s beginning to dawn on me that the idea of having a long weekend break this month is pie in the sky. None of our usual Care Agencies are going to be able to provide the 72 hours of consecutive support that Maureen would need. It would be unwise to go further afield and leave Maureen at the mercy of unknown carers.
In my blog yesterday I explained my reluctance to go to the fallback position of putting Maureen in a Care Home. Unfortunately, her family made it known at the Best Interest Meeting last week that they are unable to lend a hand. Therefore, a couple of days away together in an adult only accommodation might be the only way of getting a break. I will explore this possibility at the meetings that are scheduled to take place today and tomorrow.
Maureen eventually lost her patience with our visitors yesterday and reared up on the Occupational Therapist with a diatribe that didn’t quite make sense. Her Care Coordinator sensibly called time on their visit at this point. This was a rather unfortunate end to be an initial exploration of our set-up here that convinces me the OT will be a force for good in out lives.
Maureen also reared up on me just before she turned in for the night; hurling blankets at me because she was frightened that ‘a boy was going to be in her bed again’. She doesn’t appear to be frightened this morning but is holding onto a photo of a little girl along with her mum and dad. If only the little girl (her daughter) was still alive Maureen would be a very different person trying to make sense of her dementia and the infrequent visits of the remaining members of her family.