There is only one number of the week after the lovely day I had yesterday:
I arrived in Coventry just as my mum’s Care Home was open for visitors. I only had an hour at my disposal as lunch had been moved forward to accommodate the evening Christmas Pantomime.
Once I called up YouTube on my phone mum was transformed. She sang an danced the time away – from her chair of course. Mum shuffles around these days: it took two carers to move her from her chair onto her walking frame before she could sit with me in the longe where visitors are welcome.
I’m not sure mum knew who I was but that didn’t matter. She asked me several questions that suggested uncertainty about who this white-haired old fellow was who had come to see her. On occasions, I thought we might be warned about our behaviour as silence seemed to be the order of the day amongst her fellow residents. I began to wonder if laughter and joy were being saved for the evening’s festivities when mum would probably be asleep.
The hour came to an end far too quickly but I’m not sure mum would have had the energy for more of our antics. She almost dropped off a couple of times in between having great fun as she flirted with me fluttering her eyes and making hand signals that had me in stitches as we acted out love songs together. As I was leaving she asked me if I could take her with me to my house. I told her a ‘love lie’ that I was on the bus and reassured her I would be back very soon.
My experience at my brother’s Nursing Home was upsetting. He sat alone in his favourite chair in the Dining Room and hardly responded to my presence. There were a couple of occasions when it is possible that Bill Haley and Elvis had an impact when he straightened up from his hunched position and gave me a smile.
Any visit to see my brother always raises the same questions. I wonder if I’m seeing the progression of Alzheimer’s or the side effects of a medication regime that commenced when he was confined to an Acute Mental Health for six months. This is something I will never know but I have my suspicions that antipsychotic medication may have taken its toll on our kid!
The evening entertainment on offer was a sharp contrast to seeing my mum and brother. My eldest daughter’s children were in great form. They introduced me to Alexa who they accompanied with singing and imaginative dancing. Whenever I visit my eldest daughter I am pleased that we encouraged her train as a chef and she didn’t disappoint last night!
It’s always good to finish the day on a positive note and the girls didn’t disappoint. Seeing Alexa in action reminded me of George Rook’s latest blog where he sings the praises of his new friend.
I’m catching a train to London shortly to meet another one of my daughter’s. This will be the first time I have seen her since she gained a Master’s Degree in Public Health: celebrations are in order!
The following is copied from Linkedin with the kind permission of Norman McNamara:
I don’t get angry, I get frustrated,
I don’t mean to shout, I want to be heard,
I don’t mean to walk like I am drunk, I just can see properly,
I don’t want to keep repeating myself,
I don’t want to keep having “Little Accidents” so embarrassing,
I don’t want to see things that others cant see
I don’t want to be frightened to death
I don’t want to scream and shout every night,
I don’t want to hurt you when I am fighting in my sleep,
I DONT WANT TO DIE
I DONT WANT DEMENTIA, DO YOU ??
Norrms Mc Namara Diagnosed with dementia ‘
Today’s Buddhist message is from Mexico:
The same as any Care Partner I need to focus on Maureen’s needs rather than my own.
She woke up this morning saying that: ‘no one wants me I’m too much trouble. I can’t do anything for myself now.’
My reassurance that she means everything to me doesn’t cut any ice when she feels so lost and alone!
This has to be the song of the week:
- There are some lovely shots of Tom Petty who died this week.
- My late wife would have been 71 yesterday and she loved Roy Orbison.
- Rob my brother in law ‘has backed’ Geoff Lynne.
- Bob Dylan is ‘the man’ as far as my Buddist friend Ed is concerned.
- George Harrison was always my favourite Beatle.
Maureen certainly wasn’t handled with care the last time she went to an Assessment Centre at Ladysmith Road Care Home. When I visited her on her 77th birthday she had a black eye, a cut nose and a bruised back. They said she had fallen out of bed – I don’t believe them! That is why I had reservations about a planned admission into the Konar Suite. It is the Acute Mental Health Unit for the over 65: hardly the place for someone of Maureen’s disposition. Thankfully, a good night’s sleep brought me to my senses!
I got it seriously wrong last night by trying to negotiate my way into bed beside Maureen. She launched a verbal attack as I tried to persuade her I was her husband and fearing a lunge I recoiled and have pulled something in my right shoulder. This is a painful reminder that if I don’t handle Maureen with care then I’ll pay the price: a fear of being attacked by men remains. How sad that such painful memories will continue to haunt Maureen because her emotional memory will remain firmly intact!
After a long three-month journey, there is new land ahead:
- I had a positive meeting with our Key Worker yesterday morning.
- My Admiral Nurse will visit us tomorrow.
- I have a seven-hour break on Thursday.
- There will be regular seven-hour breaks on Wednesday’s, from next week
- I have signed up for Monday’s Teepa Snow Webinar on how to solve bathing problems.
- Our new shower room, part of our extension, will be plumbed in on Friday.
- Maureen and I slept together last night for over eight hours.
Any extension to your dwelling is an inevitable stressor in your life. The trials and tribulations of the last 12 weeks all became worthwhile when I saw Maureen smiling as she stood in the Sun Room yesterday. When she talked about how we could sit out there in the winter I couldn’t have asked for more!
There certainly is New Land Ahead: watch this space!
As I draw this post to a close Maureen has just woken up frightened that she had been left alone with the baby. She says she is worried that the baby is too cold. I have helped her to warm our offspring up and reassured her the little fellow is now safely asleep. It is so helpful that I have been able to talk about these episodes with my Admiral Nurse and now have some idea how to reassure Maureen when they occur!
Posted at 2.00 am:
I have just phoned the Konar Suite to 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!
I did my very best to give Maureen a lovely birthday. Things went well until late evening when we walked along the Prom and Maureen she told me that she felt so alone living in a strange place. This feeling intensified when we returned home: ‘somewhere I had bought with money I had stolen from her’. This theme continued as the evening progressed until I decided to take myself out of the firing line and go to bed. I was awoken a couple of hours later by Maureen banging on our front door and begging to be let out.
Once I was in sight the verbal assault continued about my selfish nature: ‘bringing my wife to a horrible cottage and completely ignoring how she wanted to spend her time.’ The attack became relentless and I phoned Single Point of Access to advise our Key Worker that I was exhausted I would need additional support today. As always he will phone as soon as he in the office to discuss an appropriate way forward.
Once things calmed down a little with Maureen eventually apologising for her ongoing outburst, I had time to think about what was going on. I noticed that all of her birthday cards were scattered around the house unopened. I remembered how she had been adamant that people should be coming to see her on her birthday rather than chasing around the country to see them. Then I also recalled how she had refused to take a phone call from her son late in the evening: we had missed earlier calls from him and his brother.
Maureen’s presentation on her birthday reminded me of David Sheard’s thesis that feelings matter most with dementia:
How would we expect someone with moderate to severe dementia express feeling deserted of their birthday? What other option did Maureen’s have than to share her feelings of neglect with the only person who had been present on her birthday!
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.
Maureen’s self-image was under further attack yesterday when we visited a relative who has her own troubles at the moment. Unfortunately, her aunt added further fuel to the fire by failing to pay much attention to how Maureen was feeling. As we walked home I listened as Maureen told her tale of woe and drove a further nail in her coffin ‘that nobody loves her’.
On our homeward journey, Maureen returned to her her theme that visitors to our home are now few and far between. Although she forgets when people have been, and understands that family members have busy lives, she has a point. The words of her late daughter are worth recalling here: she often said ‘I have a lot on my plate because I put a lot on my plate’. Her plate was always full but she was our most regular visitor until her condition weakened her so much that she could no longer make it to Cleethorpes. Maureen really misses her daughter knowing her action spoke louder than any words could ever do. Celine and Frank have a few words to say on this front:
It has been another difficult night with Maureen lashing out on several fronts. Theft has been a constant theme of her discourse with the initial focus being on me stealing her car and warnings about the consequences of taking it again. At 2.30 this morning I was again the guilty party for failing to prevent thieves from stealing her clothes. It has been one of those occasions when Maureen has an unplayable hand and empathy – even a cup of tea – have made little difference.
It is not easy to be at your best when you are woken in the early hours to find Maureen in full flow; particularly when the changes in presentation are so dramatic that you can never predict what you are going to be up against. As I tried to stem the tide at 2.30 I wondered where the compassionate woman had gone who a couple of hours earlier had been attending to my needs as if I was a young child who was feeling unwell.
I’m hoping that Dan the Man will help me to change things for the better on Tuesday. He is booked and I’m hoping a day of peace, love, and tranquility at the Madhyamaka Buddhist Meditation Centre will have a lasting impact on us both. If the going is really good we might even stay overnight.
Maureen found me in the garden early this morning digging a trench for this season’s kidney beans. She called out: ‘granddad it is too cold for you to be out there’. I didn’t mind her confusion as she always knew how much he cherished her and he was from a generation that was never too busy to see his family: he loved her all the way!
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.