When mum had taken to her bed due to not coping with dad, I had rung Jenny, the Navigator for Dementia sufferers and their carers. She is lovely and, to me, an angel! I had explained the issues I was having and also the fact that I thought mum was on the edge. I booked an appointment with her for mum and I to see her to, yet again, go over the tips and pointers we should be following.
The day of the appointment loomed and I really thought that this time, all would be well. If mum didn’t ‘get’ it, and didn’t think that I knew what was happening, then perhaps she would listen to a professional. After all, like mum, I am still learning day by day about how to cope. I play things ‘by ear’, but since I myself was diagnosed with PTSD and medically retired, I have found a patience with life, and people, that I never thought possible of me. Maybe it’s the fact that I and dad have always been really close, we have the same love of life, the same wicked sense of humour and I wonder sometimes, do I love him too much, Want to protect him too much? It’s not that I don’t adore mum, but she can be difficult, like dad, also stubborn. Mum and I have had a fractured relationship in the past, although until now were getting on brilliantly. I want so much to protect them, to look after and care for them both, and make life as good in their last years as possible. After all, they have looked after me all my life, given me love, support and understanding for 54 years! It’s my turn now to repay the love.
So, mum and I get to the unit in Ards for what I think is the answer to my prayers… Hmmmm, perhaps not! As she gets out of the car, she, (for the first time) says ‘So why are we even seeing her?’ My heart dropped, lying doesn’t come easily and I think I’ve lied more in the last year to my folks than I have in my lifetime! So rather than lie, I pretended not to hear her!
Jenny has a soft understanding way about her and as we sat and mum explained that she wasn’t quite sure why we were here, Jenny asked in such a lovely way how things were going…. Of course, I’d explained prior to the meeting, that mum was getting really frustrated with dad – and all the other issues. Eventually, only in the way a professional can, she teased out of mum that yes, she was feeling a bit of pressure and dad was becoming more agitated at her. That he didn’t even put the television on during the day so was just sitting in the living room. He wasn’t listening to a thing she said and had almost ‘turned off’ to her voice. The following points were Jenny’s advice:
- If you do want to give him something to do and he forgets – don’t worry or admonish if he doesn’t do it, leave it, for he will have forgotten the task.
- Take time out for yourself but make sure dad has lots of company too.
- If he doesn’t get out of bed, stay with him until he does, yes its frustrating, but it’s the only way.
- If he isn’t showing any interest in the T.V. (something which he loved before) put the television on for him.
- He loves music, always had, so put on his favourite DVD of Andre Rieu or his gospel choirs.
- There is a dementia group who use song – perhaps he would like to join that?
- There is a respite service for carers, she would have someone come in a couple of times a week to keep dad company and chitter away about whatever, while mum could go out and get her head showered.
- Dementia sufferers can’t deal with choices, their brain can’t cope, so asking what he wants for tea, is confusing and irritating for him. Just make something you know he’ll like.
All of this was met with mum nodding her head in half agreement. She was saying what she thought the professional wanted to hear. She was correct in saying though, that at the start of the dementia diagnosis, another person had told her to keep him active and that’s why she was asking him to do things. She just didn’t realise that ‘keeping him active’ didn’t mean giving him chores around the house lol!! At this I had to step in. I felt like mum was making a liar out of me, so I told Jenny about mum sending him down to the neighbours house…. She denied point blank! ‘I did not’ she spat!! What could I say, apart from mum – you did! But, I wasn’t going to argue in front of Jenny.
Was that hour in with the navigator worth it? Only time would tell…
As soon as we got out, the first thing mum said was ‘I can see your father allowing a stranger in to ‘keep him company’… So – there we had it, mum was making decisions for dad, yet again. I tried to say that dad loves company and they’d only be a stranger for a week or so, perhaps the first visit I could be there too? No, he won’t have it… My head was jumbled with confusion as to why everything that was asked or advised, it wasn’t dad saying no, it was mum. I said nothing, for it was left that the team to arrange the respite visit was to ring mum. Already I was despondent, but was giving mum the benefit of the doubt.
Two days after the appointment, mum had arranged to go to the solicitor to get ‘things in order’. A friend was to take her and I was to call around 2 pm to take her to another friends house as they were visiting a chum who was in a nursing home. When I went in – dad was in the living room, staring at the four walls again. I swept in and promptly put the TV on for him and we had a bit of a giggle at the news, for a woman had stabbed her husband to death and when police arrived after she’d almost merrily rung 999 to inform them of his demise, the Police bodycam at the scene had captured her ‘confessing’ and was revelling in her achievement! Yes, that’s how our humour works, the poor hubby, but if you’d have seen the footage, it was really funny in a morbid, sick way!
As mum and I were walking out the door, she shouts in from the kitchen ‘David, would you brush the kitchen floor?’ The usual uninterested reply came back from the living room ‘Aye’. So, we merrily went on our way.
Anyone who knows me is used to me clambering into bed early with ‘the boys’ ( Two huge big lanky lurchers!) and I had done just that on Wednesday evening when the phone rang. I couldn’t get to it on time and when it rang again and up came mum's number. I knew something was wrong! ‘Lesley, your dad has disappeared’ These were the words I’d been dreading…. Oh God, now, he had taken to ‘wandering’! I literally cut the call off and was in the car within a minute – tyres screeching on the road out of my home. The weather was atrocious and there was flooding on the country roads. The normal journey takes me around 10/11 mins to get to Ards, I made it in 7!! Just as I was pulling into the driveway, I got a message from mum, ‘He was in the boot of the car’.
As I got out of the car, even more sick now than I had been on the journey over, I dreaded as to what I would say when I got into the house! There was dad, all hopped up in a coat, flat tweed cap still on his head, arms folded. I looked across at mum, face like thunder. There was definitely something not quite right here, apart from the fact that my dad, who doesn’t even take his dog out for a walk anymore never just gets up and leaves at 10 at night with wind blowing a gale and torrential rain!
Dad was the first to talk. ‘What are you doing here?’ I was worried about you dad! It was the strangest atmosphere in the house. After a while, I gathered from mum when I got her on her own what had transpired….
She had come home and he had asked where she’d been ‘all this time’. The kitchen floor hadn’t been brushed out (not surprisingly to me!) so she’d started cleaning as soon as she came in! Then dad asked what was for tea. Think that mum must have thrown a wobbly, for she ranted that ‘he isn’t going to keep me chained to the house or treat me like a skivvy!’ I admit, I blew a fuse! Didn’t she realise that he can’t be left alone for any great length of time? He wonders where she is, not due to any ‘possessive’ reasons, but it must be lonely for him when she takes herself out. The fact that he then backchatted her to the point whereby she thought he was going to hit her, also didn’t come as any surprise to me, for at this stage I felt like shaking her myself. Didn’t she see – whatever dad said to her in his frustration and confusion, wasn’t dad talking, for he has never once laid a hand on her – or indeed me. I was beyond angry at this stage and shouted – ‘Don’t you get it you foolish woman, it’s not dad talking, it’s the disease!’ I had spoken to dad before confronting mum upstairs, where she’d stomped upstairs and taken herself to bed. I asked him why he’d gone out on such a night. Perhaps it was the answer I was given which had punched me in the heart, ‘Well I wasn’t going to be screamed at like that all the time.’ I felt a sadness and for the first time since the diagnosis, a pity for this man who was always the ‘strong’ one…
He refused to come to my house for the evening, but when he heard the commotion upstairs, he came up and told me to leave it. I then felt pangs of guilt as well for allowing mum's inability to realise what was staring her in the face, to get the better of me. I left – sick to the pit of my stomach as to how we as a family were going to get through this….
Next – The fallout.
Next – The fallout.