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Showing posts with label Dementia Diaries. Show all posts
Showing posts with label Dementia Diaries. Show all posts
Lesley Stock ✒ The Way Forward.

Dad

After the fall-out with mum – things gradually got back to normal. I think perhaps one or two of mum’s friends had had a word with her, because she was smiling with dad again, and seemed to be coping better with him than ever. He certainly was in better form and back to his jovial, daft ways.

I have come to realise that mum, will always, from here on in, will be up and down with dad. She knows that his illness is only going one way, and it will get much worse. We don’t know how long it will take for dad to begin to really deteriorate, but we are expecting it to be perhaps a couple more years. Until then, however, we are all just living a day at a time. There is no room, nor time to argue, time is something that we don’t have. So, what better way to spend whatever time is left of dad as we know him, than laughing and making more memories.

Looking at the whole scenario now, I have to say, I never ever expected my dad to be the one who would be afflicted with dementia. I wouldn’t have been surprised if mum had been diagnosed, but never dad. It just shows that anyone can fall foul of the disease, and it is a hateful SOB. I know that he is deteriorating slowly at the minute, and I’m hoping the tablets that the Consultant put him on are at least stretching out the inevitable. We have never mentioned the word ‘dementia’ to him, I wanted to say so many times, dad you’re not remembering things because … but Mum in her wisdom thinks that it would upset him too much, or that he would think we were just telling him that, and in turn he would get defensive and paranoid. So the ‘D’ word, is never mentioned. I guess it’s up to each individual family to assess what they think is best for them and their loved one. I actually think he is aware of his condition, but for it to be said out loud, to him, that may be a different story.

He is definitely becoming more paranoid. Any time that mum and I are just talking, he butts in with ‘What are you two talking about me for?’. He has become very ‘nosey,’ which, in fact, was never a trait of my dad. He follows mum or me around the house, literally looking over our shoulders, especially if we’re on our phones texting. Mum used to get frustrated at him but now she’ll automatically say, ‘David love, what is it you need?’ He’ll then again ask if we’re talking about him, and when we show him what we’re doing he seems content again, and goes back to his recliner. Mum has reconciled herself to the fact that sometimes dad just won’t get out of bed and apparently the diabetic nurse who was in one morning, tried to cajole him out. He was having none of it! It ended up with the nurse getting frustrated and dad then deciding he wanted to be a baby and made all these baby noises at the nurse! Mum happened to be on the phone with me at the time and she was mortified, but I told her to let the nurse get on with it instead of her. I have to admit, I had a giggle at this cantankerous old man making an idiot out of the nurse and himself.

Some days are worse than others, but again, that is what is to be expected with this disease which ravishes the very brain cells of the victim. I do sometimes, when I’m worn out myself, or when I’m not in such a buoyant mood, wonder what the future holds for my funny, intelligent, caring, strong daddy. Will he become incontinent? Get violent? Lose his speech and faculties. Christ, even the thought of it literally makes me feel weary and sick.

Shortly after his vascular dementia was diagnosed, a routine scan showed a mass on his pancreas. I remember talking with his oncology consultant when he rang me to explain the results. I know that pancreatic cancer has a very high mortality rate and before I knew it, I was telling the consultant that I hoped if it was cancer, that it would take him quickly. At that stage I was trying to get my head around the diagnosis and was quite a mess if I admit so myself. I couldn’t bear to think, even back then, that the dad I knew, the man mum had been with for 65 years and married for 59, was going to change and become a shell. I wanted him to go quickly, not have this awful disease take a piece of his brain day by day. I even got really uptight at our disgusting legislation, which unlike Switzerland, won’t even consider end of life treatment here. As is often said, one wouldn’t let an animal suffer like that.

The day came for dads’ scope to try to see exactly what this mass was. I have now started going into all appointments, as mum is finding that her concentration and memory for details is lacking. I’m putting it down to the constant stress. When the consultant came out to me, he apologised for the length of time he had me waiting. Lesley, I’m not sure what has happened, but I’ve scoped right around the pancreas and there’s nothing there! I could have hugged the poor man. Of course, when told, mum attributed it to a miracle and the power of prayer, and although I’m not religious, I have to say, I said a wee ‘Thank you’ to whoever, whatever, is watching over us.

So, you now have a little insight into this condition called vascular dementia. It will eventually ravish the patient, but it doesn’t need to be a critical situation straight away. I’m sure every family is different, but I’ve found coping with it, acceptance of it, easier than I thought. For me, I’d rather enjoy every day I have with him, laugh when possible, be there for mum as support, and just try to live as normal a life as possible. Easier said than done, for no matter how much of a positive outlook one has, it most certainly is tiring, frustrating and ultimately just very very sad.

I will continue to ask for help when needed, continue to love this adorable man until either his dying day, or indeed mine, for tomorrow is promised to no-one. If you are going through similar, take comfort that I, as another carer would be there for you all the way in spirit. 

If you are having doubts as to whether your loved one is showing signs of dementia or Alzheimer’s, run it passed someone, the quicker a diagnosis is made the better. There are so many charities out there, The Alzheimer’s Society, Help the Aged, Elderly care, or even get in contact with Anthony via TPQ and he can get a message to me. You are Not Alone; don’t ever think you are.
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries Part @ VII

Lesley Stock ✒ The Fallout.

Dad
After dad had taken himself off on the Wednesday night and scared me half to death, I left their house wondering how I was ever going to get through to mum. Whatever I said, wasn’t making any kind of an impact on her!

Plan B – talk to her friends. So, the next day, I rang my aunts and explained the situation. Both had the same opinion as myself, that mum couldn’t carry on the way she was, not only for dad's health, but for her own. Another friend who goes to their church was summoned and asked would he have a word as well. It was literally desperation point! Mum was refusing to speak to me or even dad and I knew that this was going to end up a complete nightmare if not sorted. I texted, no answer. I rang, got one word answers, so I left it a day or so, hoping she would calm down.

I then had a dread, so real that I had a pain my chest, that dad's condition would get worse by being sent to ‘Coventry’ so to speak. I plucked up the grit and put my big girl pants on (you know the huge ones that one needs to head round to the house incase you may get a frosty welcome). The atmosphere was palpable: it was immediately obvious that things since Wednesday, hadn’t improved. So, I threw my smile on and chatted away to dad like nothing was wrong. God love him, his face lit up and he engaged in the usual conversations I get every time I head round. ‘Where’s the kids today’, ‘Have you been up to the horse (I have found he now can’t remember Freya’s name, so she’s now ‘the horse’),’Have you been to work?’ (No dad I retired 3 years ago).

Mum by this stage had got up and walked into the kitchen, where I followed her after a couple of minutes. ‘Has the girl from Social Services rang you yet about getting someone in to sit with dad if you’re out’ I inquired. ‘Nope.’ Again, we’re playing that game mum? I asked her why she was acting the way she was, and yet again the venom with which the reply came was obvious. ‘You were out of line, and I want an Apology.’ Apology? She wanted an apology?? With that, I said cheerio to dad and left their house, mind racing as to how we get round this situation.

When I came home and thought about the (albeit slight) conversation, I found myself doubting what mum had said. Had the social worker rung, and mum had brushed her off? Lately, I’d been doubting a lot of what mum had been saying, and I hated the feeling that it gave me. I rang the team at the Ards Hospital and explained the situation. Folks, I can tell you, never worry about asking for help to deal with any situation regarding dementia. I spoke to Lisa and she put me at such ease, explaining that that’s what they are there for and we had a good chat, with the result that she would come out the following week to try to assess how she could help. I have never been the type of person to ask for help, I’m a bit of a control freak if I’m honest, but in this case, I know little about the disease, and quite frankly, haven’t a clue as to how to deal with some of the issues which are now presented to me. Advice would be something I’ve definitely come to rely on!

I sent mum a text - ‘I will not apologise for wanting the best for dad AND you, you can’t cope, so tell me, what will ease it.’ I heard my phone ping a few minutes later and rushed to open the text, hoping that she was going to give me something I could work with.

‘Your decision’

So again, she’d basically blanked me, so I took another approach. I sent one back saying to have dad ready the following afternoon and I’d bring him out. There was no way, I was letting mum make me feel uncomfortable going to her house, I needed to ensure dad was ok and in good form. My son was heading into Newtownards anyway the following afternoon, so he picked up dad and brought him to our house. After a quick coffee, I asked if he would come with me to feed the horse and sheep. He could hardly get his boots on quickly enough! He has always loved animals and he thankfully has kept this love for furry creatures and nature. So he had a brilliant couple of hours feeding and brushing Freya and the two sheep she has for companionship.

Although I live in a pretty rural area, I do have the most fantastic neighbours, and I had explained the predicament previously to next door. Glenn had suggested I bring dad in for some chatter and coffee, so when we got back (clobbered in muck from the field) we headed in next door. As I watched dad and Glenn chatting and getting to know each other, I think I was glowing inside to see dad so happy, animated and able to hold a conversation about the motorbikes he’d been so interested in as a young man. He ate a great dinner and his diabetes blood results when checked were spot on. I had had a brief conversation as to what mum was doing while he was out. Of course he couldn’t remember. However, he made it clear she was still in foul form with him at least!

I returned dad much later than I’d expected as we’d had such a great day and went into the house with him, only to be greeted by the sulking 80 year old. This couldn’t go on, something needed to change. How though? I’d tried everything from shouting my frustration, to cajoling to ignoring. When a loved one is diagnosed with dementia (Vascular Dementia in dad’s case) it would seem, certainly in our case with mum also being elderly, that sometimes, the carer suffers even more than the patient. It’s a tough road. For me, patience has been the one thing that has prevented from combusting.

Next week – The way forward
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries @ Ⅵ

Lesley Stock ✒ Walkabout.

Dad

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.
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries @ Ⅴ

Lesley Stock ✒ Crisis Point.

Dad

My mum has always been plagued with depression and mental health problems herself. This started when I was a baby and nearly died by ingesting caustic soda. Apparently, she never forgave herself as I had crawled into a cupboard at 13 months old and got into the jar. Then, when I joined the police, she constantly worried about me, until in 1999, she had a nervous breakdown. 

Dad had always been the solid-as-a-rock person, he was always calm and seemed to just ‘know’ what to do in a crisis. Whenever someone close to me in the family was critically ill, or had passed away, I knew something was wrong before I picked up the phone, because it would have been dad ringing. Thankfully, he still has that stoic personality, but I have noticed in the past two years or so, he has become slightly more agitated and impatient as time goes by.

Now, dad has never been the tidiest of men. As long as I can remember, mum’s constant ‘David, would you pick that up!’ echoed around the house! Don’t get me wrong, he did the ‘man’ things around the house and garden, and is a great cook, and can still manage to get by in the kitchen. Although he has a tendency to forget to turn the gas hob off and of course, leaves the kitchen like a bombsite. But his procrastination has always been a big bug bear with mum. Now, he literally cannot remember what she asks him to do and no matter how many times I’ve told her that she shouldn’t give him lots of chores, she still insists on doing it! 

I think perhaps her denial is the key to why she refuses to accept he won’t or can’t do certain things. Is she perhaps trying to hold onto the last independence she thinks he has? I’m not sure, for although I’ve tried to have the conversation with her, she insists she knows he has vascular dementia and understands the disease. Unfortunately, what she says, and her reaction and actions, seem to be two completely different things.

While we had been on holiday, mum fell and dislocated her shoulder, chipping a bone in her arm as well, and ended up in a sling and unable to do anything for what we’ve been told up to 3 months! It then fell to me to look after them both, going around to their house 2-3 times a day, getting mum showered and dressed, making sure they had enough to eat and washing and ironing. To say I’ve been knackered since coming home is an understatement and quite frankly, another holiday is badly needed!

Before we even left Crete, I had rung the Short-Term Assessment Team at Ards hospital who were great and called out to see mum to see what kind of package they needed in the short term. After two weeks of me running around like a woman possessed, I asked her why no-one was coming in to wash and dress her in the mornings. ‘Oh, the lady came out, but sure I told her you’ve been great and doing it, so told them not to worry.’ 

To say I could have thumped her is nowhere near what I wanted to do!! Apparently though, this is common in the elderly, especially with those who have led a very independent and busy life. The thought of having a stranger come in and tend to their personal hygiene etc is just too much for them to take and they would rather family members take on that role. I however, am the only child, so everything seems to fall on me!

As the weeks passed and mum was still incapacitated, I tried to only call when they needed shopping, or to take them to hospital/GP appointments. I was making sure they had food cooked and I have to say, their friends from the church came in regularly and helped as well. 

I was again getting the constant phone calls from mum, relentlessly harping on about dad. Whether it was the fact he wasn’t getting up out of bed when she wanted him to, wasn’t shaving or showering, even down to doing chores. (I hit the roof when she told me she’d asked him to walk down to a neighbour's house and ask the surname of another neighbour!!) She couldn’t see why he’d point blank said No! Even when I explained, by the time he’d walked there, he’d have forgotten what he was even there for, she still was insistent that ‘he knows where Sylvia lives’!

I could see she was nearly on the knife edge and again tried to bring the subject up of them coming to live with me, even for a trial period. I myself was exhausted and knew that at least if they were under the roof, I’d be here to take the pressure off mum plus wouldn’t be spending precious time travelling to and from their house. Again, it was met with a forceful No. She had come up with every excuse under the sun, she didn’t like the village I lived in, her friends were in Ards, Dad didn’t want to come over. So, an ultimatum was given. Come over, or accept extra help from the Elderly care team.

In hindsight, I may have been too harsh on her. For a couple of days after the ultimatum was given, she took to her bed and was a mess! She refused to get out, spent the day crying and just left dad to his own devices. So, now I was running back and forward 3 times a day to ensure they were getting dinner and to make sure dad was ok. It had now become a critical situation again, and I was forced to ring the Elderly Care team, now for mum as well. I have been having to travel to Derry on Thursday nights to attend a course on Fridays, so had arranged with one of their friends from the church to call in with them while I was gone. I called before leaving, only to find mum still in bed and dad very low. As I sat on the bed with mum, I told her I’d had to ring the Emergency care team. To say that went down like a lead balloon was an understatement, ‘What did you do that for?’ she had snapped. I reassured her that it had been a last resort and that there was no shame or failure in admitting she couldn’t cope. ‘I can cope!!’ she spat. Inwardly, my eyes rolled to the back of my head: who was this woman kidding?

Driving up to Derry, my mind wandered to all the possible outcomes and solutions, and if I’m honest, I got an hours sleep that night, mind still racing as to how the hell I was going to get this stubborn woman to allow me to look after them but still give them their independence. The course was a waste of time the following day, for I was as sick as a dog. Tiredness and the vomiting and nausea I had left me feeling like I was dying, and I couldn’t wait to get home to my bed. So now, I was no use to them. Lack of sleep, stress and severe sickness had left me in bed unable to do anything for them. They say when looking after someone who is ill, look after yourself too. What good is a carer if they are too sick to do anything? That is something I’m working on…

Next time – Walkabout.
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries @ Ⅳ

Lesley Stock ✒ The Holiday.

Dad

Mum had booked herself and dad away for three weeks. Unfortunately, there was zero chance of me leaving the zoo I have for that length of time, so I travelled out the following week and met them.

I want to firstly tell you the background to Elounda, Crete and how mum and dad started taking their holidays there around 18 years ago.

My mum’s younger sister had moved out there when her husband and she had retired. Her husband had died unfortunately, but mum and dad (in fact all the family had visited in those years). I and my kids were the only ones not to have travelled due to her sister being one of the most vile types of people I’ve ever met! Ever heard the term ‘they’d start a fight in a cemetery’? Well, that was her, and the last time I’d had any contact with her was at my uncle’s funeral, where, yet again, she started her antics! As a matter of principle, I had stayed clear of this beautiful little fishing town.

This year however, there were a couple of reasons why I bit the bullet so to speak and relented. The aunt was unable to walk very far due to having severe back issues, so the chances of me bumping into her were slim to none! Also, I cherish my dad so much more since his diagnosis and was not going to let her stop me having what could be my last family holiday with my parents. So, I travelled to Elounda for the first time.

Both were sitting in the garden outside their apartment when I arrived. It was late, so I was ushered up to the bar to meet Aleni, the apartment owner and to get my key, where I was pleased to find out they had been doing really well in the week I was at home worrying sick!! I graciously accepted the cold gin and tonic and exchanged pleasantries before I retired and clambered into bed.

The next morning, I awoke to the brightest light warming my face on the bed. I’d forgotten to pull the balcony curtains and until I fully woke, thought I’d died and was being greeted by the angels! After struggling into bikini and sundress, I made my way to the pool to be welcomed yet again by mum and dad under the ‘fig tree’.

In the morning light, I must admit, I can now understand why they love this place so much! The pool area is surrounded by pomegranate, fig trees, palms, and although smaller than I’m used to, the pool was beautiful and there was ample sun loungers and space to faff around. Dad seemed in great form, as did mum, but when she spoke to me while we were at the pool bar the usual ‘he’ll not do anything for himself’ rants continued. I reassured her that I’d take to do with him now and she seemed a bit more settled.

The first day there, dad must have asked me 30-40 times ‘Well, what do you think of Crete?’, and every time it was asked, I answered like it was the first time he’d mentioned it. I think mum has become worn out with the constant repetitiveness of dad’s conversations. It’s not that I blame her, it Is wearing, and let’s face it – she’s 80 herself, so it must be difficult to accept that constant repetitive conversation.

The holiday was a chance for me to find out exactly what she goes through on a daily basis, and yes, it can be frustrating and wearing, but at the same stage he seemed very comfortable in this foreign place and remembered where everything was around the apartments. Getting him motivated to get up in the mornings is still an issue and many a morning, I was sent down to ‘get that lazy beggar up, he’s not lying all day in that bed’ Here is where it gets ‘odd’. Dad, as soon as I knocked on the apartment door and went in, got up and dressed and duly did what he was asked. It made me wonder why he didn’t do the same for mum I didn’t have long to find out the answer.

One morning, I happened to call into their apartment before taking a short walk into the town before breakfast. As usual, dad was still lying in bed albeit awake, mum packing the tanning creams, his meds etc into her bag for the day's sprawling at the pool. ‘Will you get up David!’ she admonished. ‘Sure, its only half 6’ says he. I looked at my watch, 8.30 am, not 6.30 …. I said, how did you get that time dad? To which mum, again in a frustrated tone between her grimacing teeth explained that he had decided not to change his watch with the time difference!! So, he was confusing himself even more! As mum swept out of the apartment, again she shouted, ‘get up!’ and promptly left!

I chatted a bit to dad and asked if he wanted to come a wee ‘dander’ with me. He declined but said, ‘she does my head in sometimes, she’s always shouting’ I tried to make a joke out of it by reminding him she had always been like that, but it saddened me to hear him feeling like he was constantly being badgered and yet, I couldn’t blame mum, she was still very much in denial about his condition. I also realised why she got so frustrated: she had left him to ‘get up’ but the minute she left, he forgot she’d told him to! I stayed and waited until he clambered out of bed, went and got his shorts on and joined mum at the pool. The whole getting up business, had taken 15 minutes of cajoling, asking and then in the end me saying I’d help him out of bed!

Being with someone who has dementia 24/7 is without doubt, tiring and frustrating, but I’ve recognised that the less ‘nagging’ is done, and more patience is shown, helps not only the sufferer, but the carer. When the sufferer looks and can read the menu, decides what they want, but then two minutes later, forgets what they’ve said they’ve wanted - it was at those times I ‘helped’ dad order, by saying ‘didn’t you want the’ whatever he’d said… It still gave him the feeling that he wasn’t being spoken for, but took away the awkwardness of him blankly staring at the menu while the waiter was there. I’d say patience is the most important thing at this stage of dad’s illness. He knows all is not right, but I want him to feel secure that he’s not going to be berated at every opportunity. I want to enjoy this time we have with him as much as possible, not get uptight, frustrated and angry at him, or cause him any anger and frustration as well.

We had some right laughs though, and thankfully dad still has that wicked sense of humour he always had, although I cringe at times because he now is becoming more inappropriate and doesn’t whisper!! I’m glad I went with them, swimming and having races in the pool with my wee daddy - just like we did when I was a child - made it all so much more special. 

When a loved one has dementia, don’t concentrate on the awful times that are coming, they’re not here yet! Cherish each passing day they remember your name, have a laugh, do the things they did when you were a child. I don’t know how long I have my dad, but by God, I’m going to enjoy every moment!

Next When it gets to crisis point. 
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries @ Ⅲ

Lesley Stock ✒ Once we had Dad’s formal diagnosis of vascular dementia, we at least started to receive appointments for the Dementia care team. 

Dad
Mum and I attended an appointment with one of the dementia care team’s nurses, who took us through the issues we were having and explained how to deal, without sounding condescending or ‘authoritative’. 

At the time, I was grateful and assumed mum was taking this all in, and that she would take in what Jenny was saying about the disease. Until now, although mum knew dad was not himself, no matter what I advised, she either ignored or refused to accept. Dad was unfortunately still driving at this stage and despite me telling mum to ‘lose the car keys’ she seemed reluctant even to accept he shouldn’t be driving! How she was able to ignore the fact that dad didn’t even know the way to his local butchers is beyond me. She was in Ards one day and told dad to meet her round at the post office, a journey he made every week. When she arrived (wind blowing a gale and rain thrashing!), there was no sign of dad in the car! She walked half way round Ards trying to find where he could have gone. She rang his mobile, no answer, she rang the house, in case he had gone home, again, no answer. She rang me at home! Just as she was about to ring the police, there he was, parked up in the square! She leathered into him about where he’d been. Of course, he hadn’t remembered where she’d told him to meet her, so he had just parked where he normally parked and sat!

It took another few weeks before I could get through to him that he couldn’t drive anymore. I told him that the doctor had said he wasn’t meant to drive as he was on new pills. Lying doesn’t come easily to me, and I had such pangs of guilt that I had now removed yet another part of his life and independence. But at the same time, my first priority now is the safety and well being of my beloved wee daddy, and of course other road users. It wasn’t as bad for us as I’m sure other families had it, as mum still has her car and can drive. (Albeit like Miss Daisy!!)

As the weeks and months went on, I noticed dad becoming more and more withdrawn, depressed and started to get quite lethargic. I spoke again to his GP who prescribed anti-depressants, which thankfully, seemed to perk him up a bit. He began to eat better and enjoyed when I took him out for a run in the car to visit my horse and couple of pet sheep. It, at least, gave mum a bit of a break.

Things ticked along for a few months and then I started getting calls from mum ranting about ‘him’, not doing this or that - things that she’d asked him to do! When it became an every day occurrence, I spoke with her again regarding her understanding of the condition. Trying to explain to another 80 year old under severe stress was difficult. She said she understood, but followed on with, ‘it’s not all the dementia you know, he’s just downright lazy!’ Things however, came to a head in early summer of this year. Unbeknown to me, mum was going out the odd day and leaving dad's lunch and insulin out for him to take. When she was returning, he’d taken his lunch, but the insulin was still sitting beside the plate. When she relayed this to me, I have to admit, I cracked up with her, for a) leaving him on his own in the first place and b) thinking that he would remember to take his meds. Again, the disgruntled reply was ‘for goodness sake, he knows he has to take his insulin and test his blood!’ She still didn’t ‘get’ the fact that his brain is now firing off every which way, or indeed, in no way that would be coherent to ours.

I could see mum getting more and more stressed and as mum has had a nervous breakdown in the past, no matter what I offered to help with, her answer was always, he can do it rightly! Eventually, mum just stressed herself out that much that she refused to remind him to take his insulin. She didn’t recognise that now, more patience is needed. Now he has to be literally Given the injection into his hand. Things had reached critical point and as I couldn’t be there 24/7, there was now a safeguarding issue around dads health and well being, not to mention mum's! I took the bull by the horns and rung the Dementia nurse Jenny. It was a hard conversation: in effect, I was reporting my own mum for neglect, but I felt I had no other alternative. I live in a large rented bungalow, plenty of room to accommodate my parents safely and give them their own space, as well as my 26 year old son and his girlfriend who I still haven’t managed to get shot of. But mum point blank refused to come. So I felt she’d left me with no other choice. I said in the first part of dementia diaries, that the road of dementia carers is a lonely one, its also a very hard one, as difficult decisions have to be made for the good of the sufferer and also one’s own well being.

After contacting the social services team, they thankfully sent in nurses to administer dads insulin three times a day. This was obviously an emergency situation and I have to say, they got it up and running within two days of me ringing. I only had two days of running backwards and forwards from my house to check his bloods and give him his injection. Initially, mum protested: they came in too early in the morning, they didn’t come at the ‘right time’ at lunch etc etc, however, within a few weeks, dad's levels stabilised and now, it has become routine for both mum and dad.

My parents always took at least two holidays a year, one of which, for the last 17 years, has been to Crete. Mum kept saying to me, you know your dad really wants to go to Crete this year now that we can fly. When she first suggested it, I thought I was hearing things!! This daft 80 year old woman, with her own health issues, wanted to trail dad on a four and a half hour flight?? I tried to dissuade her, citing everything that could possibly go wrong but in early August, she announced she’d booked the flights and Eleni, the owner of the apartments had reserved ‘their’ garden bungalow! So that was that: against my advice and misgivings, they were heading to Crete early September!! I was so worried about how they would get on, I scraped together the money for the flight (beans and toast for us for the next few weeks) and I was bound for Crete as well!

In the next part of the diaries – ‘The holiday.’
 
 Lesley Stock is a former PSNI and RUC Officer
currently involved in community work. 

Dementia Diaries @ Ⅱ

Lesley Stock  ✒ In early 2019, my dad took ill. For some time, after a barrage of tests we had to just wait it out. 

Dad

When eventually the diagnosis came, it was devastating. My wee dad had kidney cancer and the tumour was as big as the kidney that it was attached to. During the time that we (mum and I, for I’m an only child) were waiting for the diagnosis, we had noticed that my once very clued in dad, was doing things that were just not ‘him’.

He would be driving home from somewhere, and drive past the entrance to their housing development. He would ask a question a couple of times and when he was told that he’d already been given the answer, would then nod and brush it off as a joke. In May 2019, dad had his left kidney removed successfully and thankfully (at the ripe old age of 79) came through both the operation And recovery.

By this stage however, we started to see dads’ memory deteriorate even more quickly. He couldn’t remember why he had the huge scar on his stomach and when out for a meal, a few minutes after ordering from the menu would ask ‘What did I order?’ Mum made so many excuses for the memory loss, but I knew there was definitely something going on and after much debate with myself, decided to ring the Alzheimer's Society.

If anyone was ever in any doubt about ringing for peace of mind, advice or just to unload, please don’t be afraid to call them. The lady I was put through to, couldn’t have been more helpful and understanding. It was I have to say, an emotional call on my part. I think that perhaps I was also in denial about dad’s condition, but when I heard the words come out to the lady, it all became much too real for me and I crumbled. I shocked myself at the sheer raw emotion that I poured out to this poor unsuspecting advisor, and have to admit I felt quite mortified!! I’m the kind of person who tried to ‘get things done’ in a crisis, but admit I found that phone call one of the hardest I’ve ever had to make. After around 30 minutes of me blubbing and snotting, it was decided that I would ring my dad’s GP and explain things to him.

Now, dad is no stranger to the doctor. He has lived with diabetes for around 20 years and also has vascular disease, as well as then being diagnosed with the renal cancer and having skin cancer, but he is still a reluctant patient and getting him to visit his GP isn’t the easiest of tasks! It posed me another dilemma: how on earth would I convince dad to even see his GP in order to be put through the initial memory test?

I contacted his GP and found him really easy to chat to. I explained the various mishaps and forgetfulness and asked if he could possibly even call him in for a ‘routine’ check. I was so grateful when I agreed to this way of cajoling the stubborn old git to coming in. I mentioned to mum that I had contacted the Alzheimer's association and also the GP and to let her know that she should be getting a call from the doctor. Unfortunately, this didn’t go down too well and at one stage I feared she was going to throw her tea we were enjoying in our favourite café over my head! Denial again….

I have found that being a family member (especially the only daughter) of a sufferer of dementia is a lonely road. My dad was either unaware, or refused to believe that his brain was now not firing off correctly, that there were times the usual lucidity gave way to blank spaces or jumbled messages. As a spouse, my mum I think, didn’t want to admit or believe that the man she had been with since she was 15, this strong, intelligent, kind and hilariously funny man was somehow not quite the same. I think she feared that she would lose him altogether, so if she refused to admit and acknowledge there was a deficit, then it wasn’t true. To me though, ignoring the glaringly obvious wasn’t ever an option. If dad had a condition like dementia, then I wanted it diagnosed and hopefully start treatment before it really started to take the man that had been my rock my whole life.

 ⏩ Lesley Stock is a former PSNI and RUC Officer currently involved in community work. 

Dementia Diaries @ Ⅰ

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