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Respite at last!

It’s been a few weeks since my last blog but some things have happened in that time.

The meeting with my mum’s doctor took place, as previously arranged. My mum was quite emotional during the meeting as she heard things about her behaviour which she didn’t like. We didn’t want to leave her out of the meeting as we felt it was important she heard all we had to say and that she had a say in what was agreed. Having said that, my mum just wants to stay in her house. She doesn’t like people coming in to look after her and she doesn’t want to go into a care home. However, during the course of discussions, she did evetually come round to the fact that my dad needed some “me” time in order to continue being able to look after her at home.

One of the things we wanted from the meeting was an update on what stage my mother’s dementia was at. No one has every told us this, despite the fact that she has been assessed on several occasions. We were advised that currently she is “moderate”, which I think is somewhere in the middle of the stages of dementia. My mum has never taken an interest in reading about her illness, preferring the “stick your head in the sand” approach and hoping it will go away. However, we were given lots of booklets and one of them was for people living with dementia. To my surprise my mum actually read it. This is the first time that she has ever acknowledged the fact she actually has dementia and was a bit of a breakthrough.

I have to say the Doctor and nurses who were present at the meeting were all very nice and couldn’t have been more helpful. We didn’t feel rushed, they answered all our questions and were only too happy to provide us with useful phone numbers and contacts.

The outcome of the meeting is that my mum now goes to a day centre, which is actually just round the corner from where she lives, twice a week. Monday’s and Friday’s are the days, which means my dad is never more than 3 days without respite. She goes in around 9.30 am and comes home around 3.30 pm. It is a brand new building, only open a few years and looks like a four star hotel inside! She has been a couple of times now and they seem to be well organised. She even managed to have her hair cut which takes the stress of having to go to the hairdressers away from her.

I was quite happy that she had settled well and my dad was now having some time to himself. However, I dropped her off last Friday because my dad had an appointment to attend. I picked her up from the house, drove her to the day centre, saw her settled in, promptly turned to leave and burst into tears! I still can’t believe we are at the stage where my mum requires to go into a day centre.

It’s all getting too much!

imagesCA2KP08YThis 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.

Living with Dementia

cab066148658377a39f399dfde2d7c68My mum was diagnosed with Vascular Dementia a couple of years ago.  At that time I knew very little of the disease except that, eventually, my mum would disappear into her own little world oblivious to what was going on around her.  I also knew that there would come a time when she may not even recognise us, her family, anymore. The day she was diagnosed she made my dad promise that he would never put her in a care home and he duly obliged. Two years down the road, I realise just how unprepared we were for what lay ahead and the turmoil that the family would find themselves in.

The changes were subtle to begin with, a little forgetful here and there, having difficulty finding the right word, recollecting what happened last week or knowing exactly what day and date it was. Things that happened years ago seemed to be quite recent to my mum. To be honest, we were having a bit of a laugh about it all because some of the things she was coming out with were quite comical.

Then one day my dad told me that she asked about one of her brothers; when my dad casually reminded her that he was dead, it was like she was hearing it for the first time and became really upset. She comes from a large family (most of whom are dead now) and frequently my dad would tell me that she was upset because she didn’t know that George was dead or Jean or Mary. This phase lasted a while but anytime I saw her she never mentioned anything to me. However, on one occasion when I was talking to her on the phone, she started telling me about a place she went to every week.  It was just like her current house only it was in Edinburgh, where she originally comes from.  When I asked my dad about this he said she had been going on about it a lot.  He said she was also getting up in the morning rushing about to get ready for work (she is 77 years of age).  I don’t know where she thought she was going.  As I spoke with her and saw her on a regular basis it began to dawn on me that I was actually losing my mum and it hit me like a brick wall!

During this time my sister, dad and I made attempts to find out a bit more about dementia and how to cope with it.  One of the snippets of information we picked up was that you should never try to correct people with dementia.  However, my poor dad would just go along with some of the things she was saying and than half an hour later it would dawn on her that she had been talking rubbish.  She would then proceed to give him hell and ask him what he was playing at lying to her.  He couldn’t do right for doing wrong!  It was very difficult to know how to handle the different situations we found ourselves in.  At one point, she became very frosty with my sister and we couldn’t figure out why until she told us about the parties my sister was having in her house without her consent. I don’t know how many times she told me this but I just acted as though every time she told me was the first time.  My sister is married with two young children and neither has the energy nor the time to organise wild parties! My sister got hell every time she saw my mum for about a month!

As a family, we decided that we needed to investigate what help was out there, especially for my dad who was becoming increasingly edgy himself because he didn’t know what kind of a day he was going to have with her. We contacted the Renfrewshire Carers Association who have been a great resource. They told us about Power of Attorney which gives us control of her health and finances should she reach the stage where the doctors consider she is no longer of sound mind. They said it was important for us to get this because if she deteriorated quite badly we would have no control over how she is treated. They introduced my dad to a Carer’s Support Group which he attends once a month. They put us in touch with the Social Services who now give my dad some respite a couple of afternoons a week and my mum also has a district nurse whom my dad can call on whenever he is having bad times with her.

Since the start of the year things have gotten a bit more serious.  She has been having hallucinations and frequently sees her dead family wandering around the house.  She has also had periods of extreme anger and resentment, mainly directed towards my dad.  She thinks he has stolen money from her bank accounts and is convinced she had far more money than she actually has.  I now have the bank books for safe keeping along with 3 purses stuffed full of notes which she has been saving up.  She thinks my dad is hanging around with “a bad lot” and that they are stealing things from the house.  There have been times when she thinks people are trying to poison her and one particularly bad episode in hospital resulted in a nurse having to have her rib xrayed because my mum punched her.  She can become obsessed with looking for things which don’t exist and then accuses my dad of deliberately trying to “knock her off her head”.  The worse experience yet was when she had an infection and she didn’t recognise my dad.  She was convinced he was keeping her hostage in the house and, although he looked like my dad, it wasn’t him.

Now every day is a roller coaster of emotions and, at times, I have been phoned by my dad at all hours to come down and try to calm my mum down because they have been having a huge argument about something which my mother has accused him of.  My dad finds it very difficult to come to grips with the fact that, when my mum gives him a hard time, it is the illness and not her talking. He becomes very frustrated and angry and things escalate into a shouting match. I was speaking to someone recently who has been through the dementia cycle and said that frequently those with dementia turn on the ones closest to them. My dad no longer has a life of his own.  He cares for her 24/7, cooks, cleans and, because she has other illnesses and disabilities, dresses and washes her too.  I am now at the stage where I am more worried about my dad than my mum.

Having said all of the above, my mum still has some days where she is completely lucid and when we were in the process of drafting the Power of Attorney she made sure she read every detail and understood it all before she signed it.  Of course, I am her Power of Attorney because she doesn’t trust my dad!  During her good spells she is just like my old mum again. Good company, funny, witty and on the ball!  She can still pick out horses to put a bet on and work out how much she is due back if her horse wins.  However, the bad days are now outweighing the good days.

This last week, I was called down because my mum was in a right state and my dad was at his wits end.  The cause of this furore was the key to the front door.  My mum said she had put two keys for the door on the window sill in the kitchen but when they weren’t there accused my dad of stealing and hiding them.  My dad knew nothing about the keys and searched the house high and low, eventually finding them in a trinket box on her dressing table.  However, according to my mum he had put them there to make her think she was “going off her head!”

At times it is like dealing with a child and you have to negotiate and try to make them see reason when all they want to do is shout and bawl.  My dad has had spells where he has wanted to walk out and not come back because she has said some horrible things to him during the past months but he made her a promise and has said he will keep it as long as he is fit enough to look after her.  My only concern is that I am not sure how much longer that will be because I can see him deteriorating before my eyes. I know that it will destroy him should she eventually have to be put in a care home.

As a family, we just take one day at a time an try to deal with each and every ordeal as it arises. My mum has been in hospital so many times during the past year that my dad and I joke the only time we have a night out together now is when we are in A&E waiting on my mum being admitted.  It is a horrible illness on it’s own but coupled with all the other things my mum has wrong with her means that her quality of life is non existent.  I sometimes wonder how she has survived during the past year (she has had pneumonia, the Norovirus and been diagnosed with COPD) but she keeps bouncing back.

As a family, it has brought us closer together and we keep each other strong. Who knows what the coming months and years will bring but we will continue to deal as best we can and learn as we go along. My sister and I have to remain positive in order to look after both mum and dad.