Amazing Susan Macaulay never said a truer word than in her comment yesterday:
Tag Archives: Distress
Dementia: We Are Both Spitting Blood
Maureen has been spitting blood this morning as she tries to address the ongoing soreness in her mouth. I hope I’m able to encourage her to keep cleaning her teeth and use a mouthwash to try and eradicate what has become a chronic condition. My blood spitting was of a different order yesterday as I explained my concerns to our Key Worker about how Maureen had been mistreated in the last few years.
There were clear signs that there was something wrong with Maureen’s cognitive and functional capacity well before her stroke. Unfortunately, family members were in denial and the medical profession was reluctant to explore my concerns. A belated diagnosis of stroke three years ago left it far too late for any kind of medical intervention.
Maureen’s eventual diagnosis of vascular dementia led to discharge from the Memory Service. As one of their Consultants explained to us ‘you have to accept a new reality’. What concerns me as the Best interest Meeting draws closer is that reality has hardly been person-centred based on Maureen’s life experiences. All too often, the focus of professional staff has been on the disease and not the person: with a medical model lingering in the background. Their one size fits all approach to supporting Care Partners fills my mouth with an unpleasant taste with the BIM a week away!
Dementia: ‘Peach’ Is No Distraction
I decided to remind Maureen today was her Granddaughter’s 18th birthday. Conversations earlier in the week had resulted in ‘she doesn’t send me a birthday card, why should I send her one’. However, as her mother died and we undertook to try to maintain a close relationship with the young lady I reminded Maureen of the special occasion this morning.
Things went exceptionally well for a while with Maureen singing along with her Granddaughter on YouTube. This is one of the numbers that Maureen really likes:
Maureen accompanied Maeve for quite some time, waving to her and clapping after every number. Then problems emerged as Maureen tried to work out how to send a birthday greeting. My explanations were not well received as I tried to help her understand that YouTube was not interactive and Maeve could not hear her accompanying her singing. I even suggested visiting the Birthday Girl in Coventry but that fell on deaf ears. After a while, things turned really sour with Maureen returning to a familiar theme of being brought to this house against her will.
When Maureen is ‘wanting to go home’ there is little I can do to shift her reality – it is one of those occasions when distraction and redirection rarely work. I will need additional support today if I’m going to survive Maureen’s current presentation. Once again I’m looking to our Key Worker to come to my rescue with his usual person-centred approach to our situation.
One final point it is my guess that the forthcoming Best Interest Meeting has triggered unfortunate changes in Maureen’s presentation. Her advocate was here yesterday and the last time she was here Maureen was distressed for a couple of days.
Dementia: Meditation Is The Answer
Following a period of considerable upset for Maureen, there are three simple solutions to alleviate a repetition of last night:
- Remove her car from our drive to prevent her focus on others breaking into it.
- Switch off a noisy radiator in our bedroom.
- Ensure that whenever she sleeps the room is not in total darkness.
We turned in early last night to sleep in the marital bedroom together anticipating the restful night that we both needed. Maureen woke shortly after midnight and lambasted me for allowing other people to get into her car: she could see them sitting in it from the bedroom window. Her diatribe continued for almost an hour with a level of personal abuse I had never experienced before. At one stage I thought I would need to call for reinforcements to settle her down but I made do with a call to Single Point of Access. Two hours later there was a different focus for her distress.
As I slept downstairs I heard a loud bang as Maureen hurriedly descended the stairs yelling about insects in her bedroom. As she joined me in the lounge she said that there was a swarm of wasps attacking her. It didn’t take me long to assure her she was safe with me and I managed to settle her on her favourite sofa and she went to sleep almost as soon as her head hit the pillow.
My three action points above give me a sporting chance of having a better sleep tonight. I had phoned Single Point of Access to request our Key Worker to organise a night sitter but that is no ready-made solution as a female in the house overnight makes Maureen suspicious. What has helped after being woken from deep sleep is a short period of meditation to enable me to clear my mind and go back to sleep.
I plan to blog again at 7 am as I post on a very special birthday.
Dementia: A Reality Check
I had a real warning yesterday – a distinct reality check. Maureen was distressed throughout the day: initially worrying she was being discriminated against, then making me aware of the consequences of stealing her car, before accusing me of negligence in my role as Manager of this Care Home. Her offensive continued throughout the day at a time when I was struggling to stand because of severe pain in my left leg.
Having bilateral hip replacement has solved one set of problems but it has created others. I am no longer troubled by pain in my hip joints but there are days when I have aches and pains in my legs that I could do without. It is clear that sleep deprivation along with a poor sleep pattern is not giving my body a chance to recover from the daily pressures of being a Care Partner to someone who has moderate to severe dementia.
Maureen was on the attack again early this morning accusing me of feigning injury to gain her attention. Ten minutes later she has cooled down and was pleased that my TENS Machine along with a turmeric based drink may have eased my troubled legs. I hope she remains in good form as our Advocates for the Best Interest Meeting will be here in a few hours.
Two really positives from yesterday as opportunities for Carer Respite appear to be falling into place. Firstly, in the morning I returned to Waltham House Care Home to explore a number of options. I’m optimistic that we have thought through a way of Maureen sampling what is on offer there without causing further distress. Secondly, in the evening I had a really supportive conversation with Maureen’s son, who despite a busy schedule is keen to help to keep his mum remain in her own home when I take a break.
The BIM is bound to focus the need to build Carer Respite into our Care Plan. I am optimistic that plans are emerging that will preserve person-centred care for Maureen and ensure my role as her Care Partner is sustainable. However, the progressive nature of her condition means that our plans will always need to be flexible to take account of the dynamic nature of dementia.
Dementia: What A Bloomer!
I blew it last night to spoil a really positive start to our short- break in Nottingham. My Bloomer was quite simple: I went to bed and left Maureen listening to music with her brother in his kitchen. When I replay my action I just slipped away and went to bed without even saying goodnight. We all paid for my shortsighted behaviour, fueled by tiredness, later.
Maureen’s reaction to being encouraged to sleep in a strange bed with an old geezer was unsurprising. The old fellow with sleep in his eyes was not her husband, nothing and no one could persuade her otherwise. After a considerable disturbance with verbal abuse hurled in all directions she bedded down on a sofa in the safety of the lounge.
The old geezer managed to get her in bed beside him at half two after she emerged from the bathroom. Maureen bedded down beside her husband like a lamb and has slept fitfully since.
We are planning to see Maureen’s sister this morning. This will be a major distraction for us all: visiting someone who lives alone and has serious memory problems of her own. My guess would be that Maureen will be at her compassionate best this morning as she coaches her little sister on how to cope with her own memory issues!
Dementia: Cynophobia -Maureen’s Fear Of Dogs
Maureen’s extreme fear of dogs (cynophobia) dominated yesterday afternoon. It is the result of witnessing a dog bite her mother when she was a little girl and seeing blood flow from a leg wound. She is, therefore, uncomfortable with any dog near her and will cross the road to avoid them.
The dog issue emerged following a conversation with our next door neighbour who we chatted to following a short afternoon walk. He informed us that a new dog was pending following the death of a previous pet. This conversation led to Maureen thinking that I was going to have a dog and is indicative of how easily she gets confused at the moment.
Once we were in our house, Maureen was convinced there was a dog in our lounge. She was said their smell had permeated the house and our clothing. Despite my reassurance to the contrary, this theme continued for some time with Maureen venting her negative feelings about canines. In fact, she said she was moving out because of dogs in the house.
There are no dogs where I’m hoping we will be around noon. Dan the Man, our chauffeur, will be here this morning to take us to visit Maureen’s brother and his wife. I have shifted my aspirations from the Buddhist Centre near York as I think Maureen will warm to some family time, rather than being in unknown surroundings.
It will be good to be back in Nottingham visiting old haunts that are familiar to Maureen. I have a distant memory of being told as a teenager that was where there were lots of beautiful girls: I have been privileged to share my life with one for over a quarter of a century!
Dementia: Moderate To Severe?
In my opinion, there is a need to review Maureen’s current presentation and her diagnosis of moderate to severe dementia. The last time any review took place was eight months ago. In the last few weeks, there have been significant changes in her presentation along with a further decline in her cognitive and functional ability.
I am meeting my Admiral Nurse on Thursday and will request an assessment by Occupational Therapy from the Memory Service. They will be able to advise me on suitable adaptations for our home and how to continue to be a supportive Care Partner
One thing I am clear about is how Maureen thrived on Thursday during our ‘Away Day’ in Coventry. She was in such good form in my brother’s Nursing Home that the audience grew as news of her dancing spread. Dan the Man will be here again on Tuesday and we’ll be off again for another break from Cleethorpes. The following week offers even better opportunities for taking ‘Maureen to the Mountain’ with an important 18th birthday party and Mother’s Day.
I don’t see any rush for the forthcoming Best Interest Meeting and I’m hoping that those who have to be wary of the Mental Capacity Act will have the grace to cut us a little further slack so we can add a little more normality into our lives.
Maureen is always keen for ‘Ginger’ to come to see us and I sincerely hope that in relation to the BIM our Key Worker is the only person who visits our home in the next two weeks!
Dementia: One Hour To Go
Our chauffeur will be here in an hour but I’m not sure we will make it to see my mum on her 96th birthday. Maureen is very upset and keeps asking me why her family never come to see her? She has been saying that ‘no one cares about me and no one believes me’. My words of comfort are falling on deaf ears and she is suggesting that I should go to see my mum by myself.
Maureen understands that my mum and brother are no longer well enough to visit us. If we make it to Coventry this morning I think it is likely that she will be reluctant to visit others as she says ‘why should I go to see them when they don’t come to see me!’ However, as I know she will enjoy the company of her family I will do my best to persuade her that as we are down that way we may as well call in and see some of those who are finding it difficult to get to Cleethorpes at the moment.
Dementia: A Natural Break Beckons
This morning I have an appointment with my Counsellor – the very man who suggested I should consider blogging. He helped me to think my way out of depression and see that medication was not the solution for recurring low mood. Once Maureen was diagnosed with dementia he suggested my mission was to minimise distress.
Maureen didn’t want to go on a little holiday yesterday, rejecting out of hand any ideas about a short break. No matter how we tried she saw no point in going anywhere as she ‘liked being in her own home’. I kept in touch with the manager of Waltham House throughout the day and was reassured by her empathy for my predicament.
The consistent advice from professional staff yesterday was to work within my usual remit of minimising distress. It soon became obvious that Maureen could see no valid reason for leaving her home and going anywhere else. No matter how we dressed it up: ‘the lady was not for turning’. Today brings a new beginning, unfortunately, it is cold and raining heavily so my chances of getting Maureen out of the front door are slim, to say the least!
There is another possibility for a short break for both of us. My mother is 96 on Thursday and Maureen is keen to join me on a trip to see the Birthday Girl. Family members are already offering to put us up for a night or two so we don’t have to travel over 200 miles in one day. Such a natural break is a phone call away and our chauffeur will be here tomorrow morning.
Our professional support team has always alerted me to the dangers of Burnout: there is a constant message to look after yourself. Respite care for Maureen is usually seen as the solution when I begin to feel jaded. I understand that a rolling programme of regular breaks is a sensible arrangement. I am optimistic that Waltham House is only an assessment away from filling such a gap in our Care Plan. However, from past experience, I can safely predict that Maureen will be distressed by such arrangements. To paraphrase her words ‘I’m ready to give up whenever you have tricked me into going in a Care Home’.
It’s fortunate I’m seeing my Counsellor this morning as I’m sure I will emerge from our session with a pragmatic way forward. It is so helpful that his initial training was as a Mental Health Nurse working in a Dementia Unit.
I hate to think what readers of this Blog ‘who live dementia’ would have thought if I had deliberately ‘tricked Maureen’ into not seeing the Birthday Girl tomorrow. It could even be that we go today as Maureen never knows what day it is and could well think we will be heading south this morning!
Dementia: Sharing The Good Times 
‘Such a roller coaster
‘.
I had one heck of a ride yesterday often finding it difficult to console Maureen when she was frightened out of her wits. How on earth she coped when she was even unclear who the only person who was here to support her was I will never know.
Despite feeling exhausted I have decided to try to tough it out until the Best Interest Meeting on Thursday. Although I have never been one for more than The Walzer’s I need to ‘stay on the ride’ until I can get together with our Multi-Disciplinary Team to discuss where we go from here.