Yesterday before fetching Mum, a Senior member of staff from Broad Glade phoned. She had contacted the new GP surgery with an ‘urgent request’ for a referral to the Dementia Support Outreach team. She used the word “violent” to describe Mum, saying that Mum has been crying all the time, throwing things, pushing staff away… basically it sounds like she is rebelling.
When I arrived, staff were still trying to contact Mum’s dementia doctor for some support. I think the GP switch has gone a bit pear-shaped. They are obviously doing what they can though. The manager said that Mum had thrown her bowl of cornflakes over the table, so they have moved her to a new table, to dine alone –away from the other residents. I hope that is a temporary solution rather than a permanent precaution. On reflection it seems rather severe. One doesn’t put a child on the naughty step forever!
They had told her I was coming and I found her in one of the lounges.
As they announced me with a “See, we told you your daughter was coming”, I had no opportunity to see if she recognised me today or not. I get ever-tighter hugs.
This time she cried, “I didn’t think you were coming back again. Where have you been?”
I had walked there, so we walked back to my house together, earning ourselves a refreshing cuppa. Many times she asked, “How are the boys?” and “So, what have you been up to?” I tried to answer each time.
I tried to find out what Mum has been experiencing that has caused such a change in behaviour. She said that she “does this and that and then it’s all gone, nothing happened… I can’t do anything. I think I’ve done it, but I haven’t.”
She said yes to feelings of frustration and anger. Frustration about the above and anger at herself, “because it’s me that does it”.
I told her that being ‘mardy’ makes everyone else miserable as well, because they want to cheer her up and help, but they cannot if she’s ‘being mardy’. I wish I knew how to help. I think she would prefer to live here with us, but it became too difficult for us… I do wonder if I should have just forced myself to keep going for her. Sometimes I think she’s so sweet and defenceless; that I’ve not been fair to her.
When I took her back yesterday, the evening staff were standing in a corner chatting and said to ‘put her in a chair somewhere’. I am grateful to them, but I do wish they had more staff and would do more with her and try to interact – more like they do in the day-centre – with conversation, activities and games.
She is safe there and I don’t have to do all the work now, so I must not complain. I’m sure she feels that I’ve abandoned her. I have to remind myself that she was often frustrated and bored living with us. I am trying not to think what would happen, if her defences and mask falls altogether and she decides to rebel against all the fear, pride and pain that held her for so many years… If she finally lashes back, what will she do, or what will they do to her?
I need to speak again to the dementia doctor, or to the Outreach team.
We talked about family and Daddy. I had Mum’s brass tankard downstairs, which still contains some of Dad’s ashes. Mum had it inscribed, it reads:
Malcolm T. Haynes
Dec. 1945 – April 1995
A Very Special Brew
no half measures.
It’s supposed to be funny. Special Brew was his favourite beer. Clearly he had had a very full measure that night – it killed him. He was definitely not a man for moderation. All or nothing. Gee, that’s a legacy I keenly feel.
It seems that all the ‘carers’ services are compiling surveys at the moment. It was strange to think back to the various volunteers and Befrienders we have had and to how much I valued them for what they offered to Mum in terms of their friendship. Mum could speak with them in a way she would never speak to me, as her daughter.
I did mention, on one form, that I had been disappointed that when Mum went into Broad Glade, none of her volunteer ‘friends’ were allowed to visit her. They each took Mum out walking and would have a good laugh and ‘put the world to rights’. Even though Mum didn’t like going to the day-centres, she still had a variety of activities on those days too. Now she only has me to visit her and take her out. The rest of the time she is stuck in that warm, enclosed environment, surrounded by old people.
I asked Age Concern whether any volunteers could give some friendship and company to the lonely residents in these places too? Perhaps I just need to go more regularly and be satisfied with taking her for a walk around the block, or to the shops.
This morning I got another call from the unit manager at Broad Glade, saying that Mum has refused drink, food and medication and is pushing everyone away. She had gone off to another Unit and walked into someone else’s bedroom. The unit manager asked me to come and calm her down and get her to take a drink.
Mammy was in her room, door closed, music on and she was crying. We had a long hug and she apologised for ‘being mardy’ again.
Her general complaint is still that there’s ‘nothing to do’. And she hates that beaker with the spout. I tried to explain that the people there are trying to help look after her, but she said, “Oh, I don’t want that!”
I said that these people make meals and cups of tea for her and help her with washing and dressing, but she said that she does ‘all that’ herself.
She let me put her walking shoes on, glad to get out for a while. As always she transformed the moment she hit the fresh air and soaked it all up. We had a brisk forty-minute walk, up hill and down dale, and got back to Broad Glade in time for lunch. I wanted to defy the system and restore her to her place at table, with the others. So I did and I sat with her through lunch and dessert, helping and encouraging her in a way that they cannot (not because they don’t want to, but because they are too busy).
The other two ladies on the table thought I had come to visit them. Mammy did well with the main course and I fed her the dessert, at which she melted into raptures of giggles and delight at each mouth-full.
Mammy looked suspicious when we first sat down at table and her expression told me that her thoughts were not good. She laughed when I reminded her that I’d known her all my life and knew when there was something awry. What she expressed was that she didn’t trust the people around. She thought they were taking her things from her, as some triggers from the unconscious mind were in fear and mistrust. It reminded me of when she thought that the wild flowers were hers and that someone had stolen them. I reasoned that the people there were too busy cooking her tasty dinners to be stealing cardigans.
The noises in the dining room were disturbing. The TV and a radio programme were both on high volume. There was additional noise from the carers, who had to shout to find out what the residents’ wishes were.
“Do you want ice cream or custard with that, Avril?”
There were involuntary and more unpleasant noises from some of the residents too.
Mammy was not the only one disturbed by the cacophony. It seemed to make them all a little fractious and jumpy.
I spoke to the carers for a while before I left. They are all working very hard, but are obviously severely understaffed and are unable to provide the level of care that they feel the residents deserve. They pointed out that, as the residents in their care get older, their needs increase and for some residents their needs change more rapidly, as Mum’s have done. There are two carers for 15 residents, which, at peak times is nowhere near enough. It is a residential care home, rather than a nursing home, but they are registered for dementia and many of the residents do need high maintenance.
I have decided to write a couple of letters – to the Council and to Age Concern – to make a few observations and suggestions. They cannot form policies and make changes without ideas for outcomes and solutions from others. So I’ll give them some of mine concerning staffing and volunteers and see what comes of it.
Debbie rang, so I was able to tell her first hand about Mum’s change of behaviour and how she is at the moment.
Something I remember my mum saying from quite a young age:- “They shoot horses, don’t they?” I think it was a film with that title, but I remember her explaining to me the meaning of the title. Now, when I see her so lost in distress, confusion and frustration, I think of those words and wonder… I think that she really does not like her life.
I got to Mum’s about 11am yesterday to meet the Physiotherapist, but was told that Mum had had nothing to eat or drink and no medication again that morning.
They didn’t know that the Physiotherapist was coming either. I was also told that there have been complications with the GP situation. Mammy is no longer registered with our GP, her medical records have been sent on, but the surgery to which they were going have changed their mind about accepting new patients. So Mum doesn’t have a GP at all.
The home is desperate to get her seen by a specialist, and a CPN (Community Psychiatric Nurse) from St Peter’s Wing is expected to visit soon.
I found Mum marching down a corridor towards me, being herded along by one of the friendly carers. She approached with her head down, eyes up, face like a charging bull in thunder.
I said something like, “What’s up, Misery?” and thought she would kill me. She dodged defensively until I said, “Mammy?”
Well, she gave a desperate cry and rushed into my arms, sobbing – grabbing so tight as if terrified, relieved. “I thought I’d never see you again!” she sobbed.
I’d only seen her two days before, but of course she doesn’t know that. When we were hugged out and wet with tears, I took her to her room. She kept saying how she was daft, stupid, mardy and that she tries to do this and that, but can’t. Unfortunately she doesn’t know why she can’t do it, or what it is that she can’t do. She knows she keeps crying and ‘being loony’, but doesn’t know that she’s being aggressive to others. She is scared. She thought I’d gone forever. She said that she keeps seeing Dad and that he wants to take her somewhere. She wanted to go, but it didn’t happen. She said she doesn’t want to hurt me and I poured out all the reassurance and love possible.
When the Physiotherapist came, Mum was red-eyed but calm. I was surprised to learn that she’d already been to see Mum last week and had shown one of the carers some exercises to do. They were fairly straight forward breathing exercises and I’m not sure how effective they can be. But we did them.
Then I checked out Mum’s medication to make sure there were no more surprises. She has had codeine for the cough (and now needs something to loosen the bowels, because of the codeine). And she is on another dose of antibiotics. I gave her the medication and we played music in her room and had lunch there. We were listening to Willie Nelson, so she was maudlin rather than eating.
“Stop sobbing and eat, or I’ll turn the music off”, I laughed.
“Yes, Mammy!” she replied, taking another mouthful.
Mammy was staring at me again with a soppy look, put her arms towards me and said, “You’re lovely!” She kissed me.
It’s strange but lovely – finally having the warm hugs and kisses that I’d been desperate for as a child.