After a much better night, I realise how mental exhaustion has sapped my ability to think clearly. Yesterday our Key Worker came to our rescue with a Night Sitter who has been a breath of fresh air for both of us. He also encouraged me to explore the possibilities for an immediate Respite Break by placing Maureen in a Care Home. My task this morning is to reflect on the options for regaining my vitality and ensuring Maureen is in safe hands. I’m keeping my powder dry at this stage until further discussions have taken place this morning with a number of key players.
Our Key Worker is due at two this afternoon to begin the process of reviewing our Support Package. He is the only professional that Maureen remembers although she has recently reverted to calling him ‘Mr. Fish’ after months of referring to him as ‘Ginger’. I’m not sure what she will call him after today’s visit but I expect his trademark of treating us with dignity and respect will remain. As Maureen lacks capacity decisions have already been made about her future care and accommodation at a Best Interest Meeting, almost a month ago.
I find it a little concerning that I have yet to receive the minutes of the BIM. However, the decision for Maureen to remain at home was unlikely to have surprised any of the attendees. The meeting also tidied up our relationship with members of the Multi-Disciplinary Team: with the Home Treatment Team and Maureen’s Care Coordinator bowing out of proceedings. The former I understand the latter a disappointing feature of Vascular Dementia i.e. no treatment and discharge from the Memory Service.
There is little doubt that Maureen’s dementia continues to progress. What is unclear at the moment is whether infection or a dip is behind her current presentation. However, there is clarity about one issue our current Support Package is inadequate and continues to put me at risk of Carer Burnout.
Maureen made a comment very early this morning that is a sobering reflection on her situation.: ‘No one really wants me: not even you. I know you need a life of your own and have to pay people to look after me. I wish I could go somewhere else to be looked after by people who really cared about me’. She is in no doubt about those who care about her and those who say they care about her. What she doesn’t understand is that self-preservation may mean that I may need to defect to the latter camp unless an improved Support Plan is forthcoming. Then she will be looked after by those who are paid to care for her!
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.
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 meetingsthat 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.
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.
Dementia: Sharing The Good Times 