This weekend saw things come to a head with my mum and dad. My dad quite simply declared that he couldn’t go on looking after mum and he said he would be telling the Doctor that when we see him on 22nd July!
To be honest, I am not surprised. His respite stopped a number of weeks ago and the nurse who attends to my mum has been off work for almost a month. He has been on his own, without a break, for much too long given how my mum is at the moment.
It started on Friday morning when I was driving into work. My phone rang and I know the only person to phone so early in the morning is my dad. Mum was demanding to see a doctor and he couldn’t get her to tell him what was wrong with her other than her usual aches and pains. I phoned work, told them I needed to take the morning off and changed route to their house.
On arrival, my dad opened the door with the words “It’s been a nightmare, we’ve been up all night”! I ushered my dad into the living room and popped in to see mum in her bedroom. I could see she was having difficulty breating and was upset. She said dad had been shouting at her and wouldn’t get a doctor. I know that when she gets upset she has trouble breathing and sort of hyper ventilates. So, in an effort to calm her down, I asked my dad to give her some breakfast, give her her medication and I also made her drink a glass of water because she looked a bit dehydrated to me. I sat and talked with my mum for a while in an effort to calm her down and my dad went out to the shops.
My mum mentioned that dad had been shouting at her but in her mind she hadn’t done anything to deserve it. However, talking to my dad he explained that every night she wakes up during the night asking about letters from doctors and appointments. It’s not just once a night but several times. This has been going on for weeks and she seems fixated with appointments. If my dad doesn’t know what letter she is talking about she gets angry with him and accuses him of having trown it in the bin. He hasn’t had a decent night’s sleep for weeks. However, according to mum this only happened on one occasion! She doesn’t know she is going on and on about the same thing night after night after night and if you try to tell her this is the case she says my dad is lying.
Eventually, I got my mum calmed down to a point whereby I could make a proper assessment and decided that she needed to see a doctor. As it turns out, I made the right decision as she has a fairly bad chest infection and we caught it just in time.
I left mum and dad’s around lunch time having managed to calm them both down and I phoned later on in the evening. Everything seemed to be ok. On Saturday afternoon my husband and I popped down and dad was taken out for a couple of hours to the pub while I sat with mum. She was up and dressed and seemed not too bad.
I was at the gym on Sunday morning when, at 8.00 am, the phone rang. I just new it was dad. “Can you come down mum is demanding a doctor!”. So I jumped off the treadmill and headed down in my gym kit. Mum was in the same state as Friday, breathless and crying, with dad meeting me at the door saying “It’s been a nightmare of a night.” So I repeated the sequence I had on Friday only this time I decided that she didn’t need to see a doctor. I stayed with them both until they calmed down and when I phoned dad later on he said mum had been apologising for causing so much fuss. However, I knew that she would forget that come the morning.
I am worried sick about them both. When my mum was first diagnosed with dementia I assumed that she would only ever go into a care home when she reached the stage that she had really no longer had any grasp on reality. However, it now looks as though we may need to contemplate her entry sooner simply because my dad is reaching the stage where he cannot cope with the behavioural aspect of her illness. She can still have perfectly lucid conversations, knows exactly who we are and some times has more of a grasp on reality than I do but she is not sleeping, does get confused, confrontational and even accusational. All of which is making it more and more difficult for my dad to look after her. To be honest, I think I would struggle too. I can’t imagine what it must be like to have interrupted sleep night after night and then suffer a barrage of abuse because you can’t find something that doesn’t even exist. My dad is quite simply at the end of his rope and if we don’t do something soon I fear we will lose him before my mum!
Prior to my mum’s nurse going off sick we were in the process of looking at rolling respite for my mum which basically means she would go into a care home for one night a week to get used to the place and, as her condition deteriorated this would increase but she would be used to the place and eventually if she needed to go in full time the process would be seemless. However, this has all been put on hold. Meantime, my dad has been left without any support whatsoever. We are now in the process of trying to sort this out because deep down I know that it would break my dad’s heart if he had to break his commitment to her to keep her at home.