I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.
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I do not know what I would do without our Single Point of Access ( tel:256256). This morning they have helped me once again. Shortly after 6 ‘o’clock, they have advised me that I can drop a sample off at G P Out of Hours to establish if Maureen has a UTI. The Laboratory may not be accessible to the public on a Bank Holiday but staff will be working and we should get the result in a couple of days.
By the middle of the week, we will know if the infection is behind Maureen’s extreme fluctuations in her presentation that plagued her on Sunday. There is no let up for her this morning with concerns about a children’s party that is being planned and mad parents dressing their little ones up in ridiculous outfits. She keeps telling me how frightened she is all of the time.
One significant difference yesterday was her fears that she was becoming a burden to me because of her poor memory. I sang this one to her this morning to reassure her on that front:
My singing appears to have eased Maureen back to sleep and further rest might ease her troubled mind. Girl Monday will be here at ten to support the sample securing process which might be a little easier with a recent purchase. I will then hot foot it down to Grimsby Hospital so that we will know as soon as possible if we are dealing with an infection or further changes in Maureen’s condition.
Maureen has just woken as I’m about to post telling me how ridiculous the party is and how frightened she feels at the moment: her fear is palpable!
I need to sort myself out and get back into a sensible routine following Maureen’s stay in Respite Care. Firstly, I need to resume blogging on a daily basis as it is an important therapy and a means of keeping on top of things. Secondly, I need to act my age (71) and accept as my Key Worker often says: ‘you are no longer a Spring Chicken’.
Fridaydid not go at all well with Maureen rejecting any of the Occupational Therapists attempt to leave us with an Easy Bather. Maureen was so affronted by the idea that she took off and it was some time before a stranger helped her to find her way home. He greeted me with those supportive words ‘I understand’ which is so reassuring when you are trying to support someone with dementia and is typical of the folk around here. It is a shame I didn’t understand her resistance to something that would have really helped me to relieve the pain in my aching limbs. One thing I do understand but fail to accept is my age as I continue to act like a Spring Chicken and this is something I have to address.
So acting my age begins from now with:
Simple menus and cooking double amounts so that meals can be frozen.
Using the dishwasher on a regular rather than occasional basis.
Reducing the workload in the garden with fewer pots to tend etc.
Taking painkillers to ease my aching limbs.
Carrying out the exercise regime from my physiotherapist.
Trying to ensure that we both have a scheduled rest every afternoon.
Our Key Worker will be here on Tuesday afternoon to review our Support Package and this is an opportunity for Focus Adult Social Care to put their money where their mouth is and consider what these two old birds now need!
When Homefield House contacted me to say that they were struggling to know how to help Maureen settle down I mentioned how music is so important in our lives. They clearly followed my advice and Maureen has told me all sorts of stories of how she entertained them during late night sessions. She has also suggested that we put a show on for them one day as she thinks they might doubt we have Gold Medals for Latin and Ballroom.
Music has continued to be part of our routine since our return home. We had a restful day yesterday recovering from our ordeal at Grimsby Hospital. Maureen’s G P checked her over in the afternoon and didn’t see anything that was of major concern. Hopefully, time will allow a laxative to clear the problem that emerged following her stay at Homefield House.
Once again Respite Care has not worked well for Maureen. It is fortunate that I feel refreshed from my break as there is now, even more, work to be done here. Maureen already felt deserted by her family and she now thinks the only friend she has in her life has left her at the mercy of people who have not treated at all well.
This song sums up her mood here at the moment:
As time passes and wounds heal I know Maureen and I will be singing to this one again:
We will eventually find our own way to ensure that I continue to have the energy to be a supportive Care Partner. The traditional approach to a Respite Break has once again been more trouble than it is worth!
Yesterday turned into a marathon and it was almost 5 ‘o’ clock before we were able to hit the sack this morning. Following an evening telephone conversation with a G P, I decided to take Maureen to Grimsby Hospital. The waiting room was busy on arrival and packed during certain times during a long night. At the end of our stint, I’m not sure how much had ‘cleared’ but I’m hoping that laxatives will return things to normal in the next few days.
I would award Grimsby Hospital top marks for being dementia friendly. From the moment we arrived at reception until Maureen was discharged she was treated with dignity and respect. She was never once challenged when she felt the need to explore her surroundings as she waited for examination, treatment or medication. In fact, staff went out of their way to reassure me that her presentation never once caused them any concern.
Clee Medical Centrehave also been extremely supportive in the last 24 hours: as always. I have received almost instant responses to my telephone calls with advice that has always been person-centred.
We are not out of the woods just yet and Sleeping Beauty is catching up as I post. It has been good to have 5 days of Respite as I don’t think I would have got anywhere near a personal best yesterday without it. As a fun runner, I decided a half marathon was far enough. Maureen went well during the ‘race’ as her compassion shone through. Despite her discomfort; she consoled distressed children, chatted with anxious parents and entertained fellow patients with her repartee.
Dementia rather than personal choice is often calling the shots in our lives. However, with the compassionate support that is always on offer in this area, we will always try to give it a run for its money!
N.B. I have decided to break my new regimeand post today so I can copy the above to Grimsby Hospital PALS and staff at Clee Medical Centre.
Maureen has been sleeping for the last hour something that had proved difficult during her five nights in Homefield House. I was informed this morning that she had not been to bed for the last 48 hours after turning in earlier in the week around 2 am.
She was so pleased to see me when I found her sitting near to the entrance of the Care Home this morning. She looked radiant, smartly dressed and well kempt. In fact, she looked rather dishy!
It was difficult to keep track of her during our journey home. She mentioned that it had been so cold on a ferry trip this morning that she had rescued a small child who needed warmer clothing. She was also keen to tell me how she had been the star of the late night dancing classes with her stunning choreography.
As we pulled up outside our house she told me she had been in a hospital for 4 to 5 months. She also mentioned that she wondered if I wanted a divorce as I had not visited her in all the time she had been away.
I’m hoping that her confusion will diminish once she has had the rest that she clearly needs. Unfortunately, rain has stopped play on my work: to wash all clothing that has been in Homefield House. This is always something that needs to be done whenever Maureen has been into a Care Home as the aroma that remains on clothing is always rather unpleasant.
I feel refreshed after a break from my caring duties. The Manager of Homefield House has confirmed that one to one care for Maureen would be needed during the night for any further periods of residence.
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.
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!
Neuropathy Nightmare 