12 Months

It's a year since my father had a heart-attack and my mum spent her first night in care. A whole year of being away from the comfort of her own home and familiar surroundings - I wonder if she still remembers the place at all. In fact, we've just about reached the point where she no longer knows who I am at first when I visit her.

Just like today, when I visited and fed her the evening meal: small sandwiches, fishcakes, spaghetti hoops and what I think was fruit-flavoured blancmange for dessert, finished up with a vitamin tablet and nutritional shake. Not the most appetising of meals but she always polishes off everything my sister I feed her when we're able to. She is not gaining any weight though.

A couple of times during my visits I do ask her who I am or whether she knows me. Today, like most visits nowadays she shakes her head and says she doesn't know. Sometimes I even wonder if she's mucking around and trying to pull my leg. I keep addressing her as mum, saying things like "It's cold outside today, mum" and "Did you sleep well last night, mum?" or "Are you feeling hungry, mum?". I don't think she understands the sentiment but when urged or prompted by the staff she says I'm her brother or her husband half the time before saying "It's my Stephen".

A lot has happened since my last blog post here. Moving home was as stressful as expected but we've settled in. Raising our baby boy (now nearly 19 months old today) hasn't got any easier. He's starting his tantrum stage and wanting to climb up on everything or pull things off tables and what not. Changing nappies is particularly difficult, especially when you're out - it's a real struggle with a kid who doesn't want to sit still when he's got poop all over his bum and needs cleaning up before putting a fresh nappy on.

We took part in the Alzheimer's Socity Chartiy Walk which was a lot of fun. It's amazing just how many people and their families are affected by dementia, and I came away from it feeling positive to have raised some money toward a good cause but sad to realise mum wouldn't have the foggiest idea what I might have done or why.

My father visited her this morning. It must have been hard for him, knowing it's a year since his health problems resulted in him having to live alone after the best part of 40 years. He has recovered well though after his triple heart bypass. It was only yesterday that he visited the cardiology team that had been seeing him for years now already for a check-up. His own health isn't getting any better though - his sight and hearing is failing him and it's just a matter of time too before he'll need some assistance. I thank my lucky stars that he, at 75 years of age now he still has his marbles and manages to be mobile, despite the problems with his eyes and ears as well as his heart.

Dad did comment positively on mum's appearance today, and I had seen it too. She was dressed in a blue mock shirt and jumper, trousers and was wearing socks, thank goodness. She was bright and alert and clean. Sadly though, despite the feeding and nutrionist help, underneath those baggy clothes she is pretty much a skeleton nowadays.

She still maintains her strength though. Delivering personal care is still a struggle for the staff and she still puts up a fight. I found it oddly funny that I had waited in the day room on one occasion recently while mum was being cleaned and dressed, and there was an advert playing on the radio: the narrator was selling something and said "Listen... what do you hear..." and on the radio there was silence for a couple of seconds, while right there in the room all anyone could hear was mum shouting and wailing in her room across the corridor.

Since my last post, we've also had another review. The Clinicial Commissionning Group had sent someone from social services to conduct another assessment for mum. I went with my sister and two of the senior members of staff were present too. The results came in at high or severe for the most part, and right now we await a response from the report put foward to the 'panel' to decide on funding. I'm hoping that mum continues to receive full funding, given her condition. I can't even imagine what would happen if she wasn't able to stay where she is, with the support given by the nursing home. She's been there a good 9 months now I think, and it's the only place she'll be able to call home, even if she does still, in her distressed moments, keep telling us she wants to go home.

I'm sure that this time last year, as I write this, we were getting ready to visit the residential home with mum's little bag of belongings, thinking it would only be a couple of weeks at the most. It was one of the most heart-wrenching moments of my life having to leave her there. I can't imagine how confused she must have been. It brings a lump to my throat to even think about it now, but goodness me, we had no idea what was in store for us.

Dynamics

In the past I had always felt dread at the prospect of seeing mum because of what might be waiting - the combination of the sounds and the smells and the trauma of seeing her in a bad state made those visits so difficult for all of us. I tried to put how I felt down on paper but I don't think I could ever truly convey the emotions we went through during those awful first few months.

There has been a definite shift to the other end of the scale now. Dare I say it, I do enjoy going there and the time I spend with her, something which should always have been the case but was almost impossible given the stress and worry we all felt. I don't think about work or the house move or how little sleep my wife and I may have had because our little one has been up during the night. It's all quite therapeutic just to sit there and hold hands and help her eat and drink and listen to whatever she might have to say, which sadly is getting more and more nonsensical.

So there is of course that underlying sense of sadness despite the smiley faces and pretty pictures on the walls and cheery music from the CD player. It's difficult to stay upbeat when your mother is screaming and wailing because she's fighting off the staff who are trying to deliver the personal care she needs.

But anyway, there is a reason for this change in dynamics. One of the more louder residents, the little but very vocal white-haired old lady I've mentioned several times in this blog, has now been moved to another home.

It's an awful thing to say but it's clear to see how the aura has changed with her not being there. The home is much calmer, and the residents look far more relaxed, mum included. It was always unsettling to have this lady weaving in and out of the rooms, telling the other residents to get a move on (who are quite happily sitting there completely oblivious to her ramblings half the time), banging on doors and windows, crying out for people that were not there and wanting to be let out. I've witnessed several times how other residents have got agitated to the point that they do speak up, which is often out of character. I'll never forget the "she's a nutter" moment from one of the old gents there.

The bruising from mum's falls has gone down and she's looking far less gaunt and haggard than she has done. Her medication has been changed too, I know that much - and she does appear to be eating more, which is a result of my sister and I always bringing fruit and snacks in and encouraging her to eat with us. The staff appear to be doing a better job of helping her at meal times and there hasn't been any sign of UTI or chest infection or other illnesses, so on the whole she appears a lot more healthier which is encouraging for us all.

What got me sad on one of my visits was learning of the death of another resident.

It was in fact my mother's neighbour, in the room right next door. Mum would not have known who she was. I hadn't known what the hushed commotion was all about that morning while I was sat with mum in her room. The staff had got the other residents together in the day room or ensured they were safe in their own rooms (those that were bedridden) and I had seen people busy in and out the main entrance and via the back gate through the garden. We closed the door while they moved the body.

Mum of course hadn't a clue what was going on, and neither did any of the other residents. It struck me how the staff carried on as normal, but you could see they couldn't truly get used to it, despite having probably seen it so many times before. That lady might have been someone's mother, someone's sister, someone's aunty, and another family affected by dementia. I wondered if there were pictures on the walls of that lady, and that one of the staff had the task of quietly taking them down. It also made me think about the inevitable; and I prayed that it wouldn't happen for a long long time yet.

If You Don't Laugh, You'd Cry

The end of the last week was overshadowed with worry in the wake of mum having a third fall in the nursing home. Two missed calls in the early morning on Thursday sent me into a panic but when I called back the situation wasn't as bad as feared - yes, she had had a fall but wasn't badly hurt besides having another bruise on her face.

Later that day, the home called again to advise the GP had visited and, again, had recommended that mum be taken to A&E for an x-ray to check it out. While I wholeheartedly support the idea, it wasn't something I could face for the third time, but thankfully my sister was available and agreed to take mum to the hospital this time around. That evening I collected them from the entrance to A&E when the medical staff had checked her over and were happy that there wasn't amiss, and I dropped them back at the home as the hospital transportation would have taken far too long. It was already past 9pm in the evening and mum was tired besides being hugely distressed at being at that dreadful but essential place again.

My visit today was unlike any other I'd had so far. Mum was quite fine and settled when I eventually sat her down. On my arrival, she was waking around in the first dayroom, full of voice saying goodness knows what to the other residents and a few of their visitors there, but I took her down to the second dayroom where only another lady was sat quietly on her own, while the staff were in and out of both rooms busying themselves with their normal tasks.

This lady asked me how my mum was today and said to me that she'd kept an eye on her, and that she'd been fine, and asked mum herself if she was ok. Mum responded pretty positively actually "Yes dear, I'm OK, thank you very much, you're very kind". This is the sort of thing she'll say when she's settled and in a decent mood. This lady then told me she needed to pop to the loo and off she trot, looking around here and there in the corridor. In the meantime mum and I did what we do - we can't have a conversation but I can at least feed her some fruit and encourage her to drink some water and juice, and when the tea and biscuits came round I helped with that again.

Her face is still a mess. The bruising from the second fall is only now coming down but now the left side of her face is bruised and she has a cut lip. My sister and I both already voiced our concerns with the management about how and why this could be happening in the first place, but that's another story.

This other lady came back in settled down and said how good it was to see her having the apple and banana with me and how important it was to drink the water. Then she started counting the chairs in the room and said something I couldn't quite grasp about we being OK with it. Over the remainder of the visit she excused herself several times, saying she needed to spend a penny and that she'd be back in just a jiffy, only to return a few second later saying it was all a bit too busy.

It was only then that I realised she herself was another resident. It was only later that I had found out, from a visitor whose husband was a resident that I knew my name but not by much else otherwise, that this lady's husband had recently passed away and she had been moved there in a bit of an emergency, and quite a bit of confusion about the whole situation... my heart sank, realising that she herself didn't understand where she might be or the fact that her husband wasn't around anymore.

Now, this other lady - the wife to the chap I had known by name and who I think often wandered around the place with not a lot of clothes on at times and told me about this lady's situation - had told me something I felt strangely reassuring. My mum has lost a huge amount of weight since going into care. We all see this and worry about it. She does eat, but doesn't eat very much and needs a lot of encouragement. It's why whenever my sister or I visit we take sandwiches or fruits and plenty of drinks to keep her topped up. This lady explained to me that her husband had been a big, stocky, strong man before the dementia set in, and very aggressively too, and while he eats every scrap of food given to him, he's lost a considerable amount of weight. I heard her speaking to the staff while they attempted to weigh him again to find out what his weight was this week.

This rings true of another story in the care home: I had mentioned before how there is a lady that is there everyday from 10 in the morning until 8 in the evening by the side of her husband. This chap too, as his son told me the one time I had met him on a Saturday morning visit there, was also strong and stocky but is now a shell of the man he was - whittled away, bony and unresponsive to anyone. It's very sad whenever I see him, and I was told by his wife that the doctor hadn't given him much time left... it's truly a heart-wrenching thing to be told by someone. I can't imagine what this lady and her family must be feeling or going through.

So, it's no wonder that mum too is wasting away, but it was reassuring in a way - albeit a bittersweet way - that she wasn't the only one being affected and that we aren't the only ones facing the same concerns about our loved one's health.

So anyway, back to sitting with mum and this other new resident who I at first thought was another visitor. The next resident to join us was none other than another white haired old lady who is notorious for being the loudest there. She is still very mobile and very vocal but a lovely sweet lady when she's not distressed. My wife later commented that she looked like a ghost - so thin and frail and pale. Well, it was this ghost that, in her own lucid moment today, told me how great I was, such a lovely young man, that she wished me all the very best, that I was 100% and a dear, dear lovely person. In the next moment she was crying out for her mum and sobbing like a child.

And funnily enough, it was that other guy I knew by name and face and whose wife I had met today, that told me once that this frail, pale lady was 'crackers' while she was in one of her loud moments.

There are so many stories and so many characters in that place. Seriously, you couldn't make some of it up, and if you didn't laugh you'd only cry.

Wasting Away

I haven't been able to visit my mum in the care home for over a week now due to coming down with a chest cold. There's no way I could risk visiting and passing that on to her on to the other residents or staff, especially since she is so susceptible now to illnesses.

Thankfully though, my sister is back from a long break and has been able to visit and assist with feeding, bathing and changing her, so it's put my mind at ease a little. It's been particularly helpful since my lad has been ill himself (either he gave it to me or I gave it to him, but the poor bugger had a few bad nights spewing up all his milk and food after coughing so much). I've also got the joy of our house move looming close  - the mortgage offer in place and exchange of contracts is next. After that, deciding on a completion date, all of which I'm both excited about and dreading entirely. It's been enough to have to juggle with our baby boy, dad's surgery, the other half's jury service, mum's care home arrangement, dealing with council and social services... 2016 has not been the best of years for us.

The last time I visited, mum was nowhere to be seen. As usual, that feeling of dread and anxiety comes over me whenever I arrive and punch in the security codes to get through the doors, but nowadays whatever state mum might be in I know how to react to it. First port of call is the first day room and she wasn't to be seen. One of the carers points me to the other room at the end of the corridor. I head up that way and she isn't there either. So I make my way past that room and down the corridor, looking into the open doors to see whether she's made herself comfortable in someone else's room, as she sometimes does. No sign of her there.

I ask the Deputy Manager and the two of us do the same things again - looking into each room, and calling out for her. No response. At this point I'm wondering where on Earth she's managed to hide herself away - under a bed, behind a wardrobe, maybe she's slumped on the floor somewhere out cold and no-one has found her? These things do go through your mind, and it's reasonable given that she's had two falls in recent months. Thankfully though we find her dozing off in a room with the door closed, quite comfortable on her own, having some peace and quiet. You can imagine my relief but goodness me, it didn't make a pleasant beginning to the visit.

Sadly, it really hit home just how thin and frail she looks. She still has a lot of strength in her, that can't be denied, but she is thin and gaunt and again, those eyes looks tired and confused and I can't imagine what might be going through her broken mind. It is a sad sight and a tragic vision of a woman who was so strong and full of energy. The best I could do was feed her some apple and banana while she continued to doze off in her chair. All I could do was sit there and be with her for a time. We can't talk about things even when she's awake and at least showing some sense of awareness. I guess it's just all slipping away.

A&E Part 2

It has been a rather rubbish week for poor mum. Whenever I see the care home's number flashing up on my phone I get worried. They don't call unless something has happened or they need to report an incident to me and sure enough, mid-Monday morning the call comes in from the deputy manager and senior mental health nurse calls me to advise that mum has had another fall.

She has had a knock to the head again and it's quite right that she needs to be checked over by someone at the hospital, which means another trip to A&E - something I have been dreading ever since he first visit with mum a month ago. On this occasion however, she was taken straight to A&E by the paramedics, accompanied by one of the care home staff, while I followed in the car.

This visit wasn't anywhere near as difficult as the first, as they didn't pursue trying to get a blood or urine sample and didn't need to take any x-rays. Had they insisted on that, it would have been a far longer visit and caused mum a whole lot more distress. Instead, she was checked over by nurses and doctors and they were happy that there didn't appear to be any significant injuries.

The thing they mentioned which did strike a chord with me was that if they did go ahead with CT scan (even if they managed to do it at all, given mum's almost complete non-compliance now), and the staff found a bleed or some other problem, that they would not likely be able to do anything about it. This, along with the DNR (Do Not Resuscitate) order we have to think about, has put things into perspective...

We managed to get back to the care home but not after another 4 hours or so in that blasted hospital again. Once she was in the car she was fine and actually enjoys the ride, but getting her there - and taking her through the A&E reception - was the hardest part. I can't imagine how scared and confused she must have been.

I visited her today and the bruise had indeed spread around her eye as expected. She looks a complete mess. The saddest part about today was her asking me, quite clearly and on two occasions, they she wanted to go and what she didn't want to stay there anymore. I don't know if it was just a part of her mostly incoherent and nonsensical ramblings nowadays or if there was a indeed a moment of clarity and understanding of where she was. My father had visited her early today too, and was probably home by the time I had arrived, but she mentioned him and asked me to take her out.

I took my leave back to work when one of the nurses came to take her to her to change her. I imagine that on my journey back to the office, she will have been wailing and crying and doing her best not to let the staff provide the personal care she needs.

The bruises and the crying and the confusion and the rejection of people's help is a horrible picture to paint, but it's the absolute and bitter truth about what she's going through.

Is the Worst Yet to Come?

One of the few things we watch on TV nowadays is Gogglebox. On a recent show they were watching a segment from 24 Hours in A&E. And that segment was focused on an old couple, with a chap who already had a condition for which he's been in hospital numerous times. The medical staff were speaking to his wife about what they should do in the need of resuscitation.

There is such a thing as a DNR - Do Not Resuscitate - order. It means that a doctor or other medical staff are not required to resuscitate a patient if they suffer a heart attack or some other illness that requires potentially heavy-handed aid, so that they do not cause more damage or if what they do cause more harm then good in the long term.

It brought tears to my eyes, not only because their situation was terribly sad but also because one of the senior nurses in the home had mentioned this to me briefly at a recent visit. They would need to consult us about this decision. If mum were to have a seizure or heart attack or other problem, that it may do more harm then good to her frail body to try to resuscitate her or try to provide other aid that would make her health even worse.

This is something I'm not looking forward to but I understand the necessity of it. I wonder just how many people out there have had to consider such an awful thing. Sadly it feels like just another way in which we've let her down. I still feel that heavy guilt and sadness about the day she was wrenched from the comfort of her home life when dad had his heart attack, and put into the residential home. It's been over 6 months now and she hasn't been back. I wonder if she even remembers the place.

I visited her today and found her in one of the day rooms, sitting quite comfortably but a little on edge at times. Recently she is been a lot more agitated and at times, quite fearful of things around her. I recall at one point during one of these recent visits that she looked at me and said, clear as day, "I want to go home". It knocked me for six.

I'm told by the staff that it's been difficult to give her the medication she needs at times. They already dispense her medication covertly but it sounds like she's not eating or drinking as much as she should - and of course it's down the staff to understand this and provide the necessary care to give her the quality of life she deserves, but I imagine they struggle with the amount of residents they need to keep an eye on.

At another recent visit, I had the chance to speak to the son of one of the other residents. He told me the story of how his father ended up staying there, and just how difficult it was for him to visit and to see his dad lose much of the man he used to be - much older now, much thinner, and to the point of being almost unresponsive. Going from being a strong man, full of life to a frail, silent person with sad eyes. The image is so similar all around the nursing home with the other residents.

He shared with me how difficult it is to say Goodbye when it's time for him to go, and to leave his dad in the care of the staff in the home. I saw for myself just how emotional he was when he left that particular time. I admire his mum, who is there each and every day, all day long besides her husband. It must be terribly difficult for her.

My father has recovered pretty well from his heart operation, but I don't think he's yet got used to be being home alone. He manages to visit a couple of times a week but cannot bear to stay longer than an hour. I imagine other people would wonder why he doesn't go there more often, or why he doesn't stay as long as he could or should. I understand very well how difficult it is to hang around when she's distressed or angry, or rejecting the personal care she needs. In his condition it's quite unreasonable to expect him to be able to provide any assistance himself, either physically or emotionally. At some point he'll need help himself and likely won't be able to visit her at all.

The emotional strain is constantly there. But I know things just aren't going to get any better.

Dementia and Accident & Emergency

Dementia and Accident & Emergency do not a pleasant visit make.

It could have been far worse and thankfully wasn't an emergency on this occasion. I dread to think what would happen if mum had to be taken in an ambulance for anything.

My wife and our son, who recently turned a year old, had got back from a 2 week holiday last week. It was something that we booked long before dad's heart attack last November and we had been looking forward to it even more so after how difficult the last few months had been.

Mum had a fall on the Friday morning that we returned home. When we saw her on that Friday, we found her walking around as usual but had a bruise on her left cheek. She appeared OK despite the fall and I was told she had got up herself soon after falling. On the Saturday, after a GP had visited, it was suggested that she be taken to A&E to have x-rays to check for any fractures. This was something I couldn't do on my own - there is no way I could have taken her without the assistance of a carer but thankfully someone was able to accompany me.

So, off I went to the care home on Saturday afternoon and we began the first task of getting her dressed and into my car. This was achieved without too much fuss and she actually enjoyed the time out of the home. When we got to the A&E building though, things changed - you can imagine how terrified she was.

When we eventually saw someone to attempt to take blood, it couldn't happen. She is still strong for a 76 year old and doesn't keep still - it's not that she doesn't listen, it's the fact that the request or command doesn't register and she doesn't know what she's supposed to do. Staying still and being told "it'll be quick" doesn't mean a thing. So, we had to wait to see another doctor and for her to  be sedated before they could perform the task - and when it did happen, it was a dreadful experience for her and for us to have to see how distressed she was.

Trying to take the x-rays wasn't easy either. We tried telling her she should sit still for a picture - but she couldn't do that. Once the sedatives had kicked in, it was late in the evening already so she was doubly tired and nodded off on the trolley. It was only then that the operators were able to take the photos they needed to.

In the end, and 4 hours in A&E later, the doctors were happy that there were no fractures, that her blood was OK but she was showing signs of dehydration, and that she had a urine infection that they could treat with antibiotics. I got her back to the care home, and had help getting her into and out of the car, the poor thing totally zonked out from sedative and being exhausted anyway.

It's something I'd rather not have to put her through again. A&E isn't any fun at the best of times (even if there is such as thing) and for my mother it must have been a terrifying experience.

Needless to say, I don't feel in any way relaxed at all now after the holiday. Apart from the visit to A&E, our house move has taken turns this way and that, and moving house isn't exactly fun either.

Scarred

Today, I found my mum sat in the dining room on her own, looking down at her hands, but dressed and clean. It was a very sad feeling finding her in that way but when she saw me she immediately recognised me and said something quite ordinary, as though I had simply popped out to do some shopping or had come home from work. She showed no signs of distress but I saw how thinner she has become and much 'older'. She even mentioned my wife's name out of the blue, and my sister's name too, but only the one time. She also mentioned dad and I wonder what might be going through her broken mind about him.

It's a curious thing to sit there, with a pleasant tune playing on the radio in the background and the sun coming through, the tables and chairs neatly laid out, pretty pictures on the walls and a cheery message on the whiteboard with the day and date written on it with smiley faces, while down the corridor somewhere in someone's room another resident is screaming and wailing while the staff no doubt do their best to deliver some personal care. I'm not sure if mum heard it herself but she didn't react to it.

Later on, another resident was heard coming down the corridor, in one of the distressed states I've witnessed before. This time though she wasn't calling out for her husband, but instead got to the end of the corridor and to the doorway that leads to the main entrance area of the building and began hammering on the door and walls, crying out for someone to help her and to be let out. Mum didn't seemed phased by this either. Even one of the other residents, a quiet old chap who I've often seen walking around with not a lot of clothes on, the poor bugger, was not far away and her telling her to shut her cake hole and go to her room. He even turned to me at one point and said She's a nutter.

You couldn't make it up. As funny as this sounds in one way, it's truly horrifying in another. Two or three other residents I've got to 'know' now (without knowing their names or circumstancs of course) are often seen shuffling up and down the corridors, and I wonder how mum interacts with them whenever they might bump into each other.

Mum ate her biscuits and took only a sip or two of the milky tea one of the staff made her, but kept telling me she was full and didn't want anything - something that she had always done anyway in the last couple of years at home. That member of staff had told me that after breakfast, when the other residents went their way to the day rooms or their own rooms or began shuffling up and down the corridor, she had said she didn't want to move and instead stayed there in the dining room. And so it was there that I found her and there where I left her when I had to go.

I wonder now where she might be, either sound asleep in her room, or awake and wondering where she is, or still moving about up and down the corridors, into the day rooms, and maybe even wondering why someone might be screaming somewhere or banging on the doors or walls for help.

There are some memories that will never leave me, and in the last few years some of them have truly scarred me. I don't think anyone that has been affected by dementia in a loved one has ever got used to it, but I guess we all find our own ways to deal with it somehow.

Four Weeks

Four weeks ago today, mum was moved from the residential home she had been staying at since last November and into the nursing home where we expect she'll be for while yet. I must say the difference this move has made though has been positive and noticeable by all of us that have visited her, but now we've got to where we are I can't help feeling intensely guilty about how she had been wrenched from the comfort and routine of her home life with my dad. It's 4 months ago that it happened - 4 months that she hasn't stepped foot in the place she made her home for nearly 40 years.

The thing is, it wouldn't really be the first time she was taken away from her home and into unfamiliar surroundings, but that isn't something I think I've ever go into detail about here in this blog. It has been something I've had on my mind for years now.

Today though, I still feel the same dread whenever I'm making a visit to see her. I don't know if my father or my sister have the same feeling and I haven't asked. I don't think that will ever get any better, but at least on the last few occasions I've not had to witness her in the hysterically distressed states she has been in before while in the residential home.

The visit I made before last, I was greeted by the sight of her being led down the corridor in her underwear, a little emotional but not particularly distressed. Again, her voice was the first voice I heard when I got in the building. However, on that occasion the nurse and I managed to get her dressed and settled in her room and she was quite alright after a short while.

At my last visit, this past weekend, she was sat in the day room when I arrived, dressed and fairly clean, quite cheerfully tending to a cup of hot chocolate and biscuits with one of the members of staff. We left the day room and went to her own room just across the way, where we were able to spend time together to chat, listen to music and look through some old photos I had taken along.

My sister had brought along some Thai music tapes and I had brought along with me an old tape player my father still had at home. I actually remember buying her that player and she would listen to her Thai music - a particular style for the North East of Thailand. I was a little worried about playing the music now in case it triggered some emotion or memory and have an adverse effect on her mood, but she managed to have a little jig and move to the music while sat in her chair. After a while though she became distracted and wondered where the music was coming from.

What I felt quite encouraged at that visit was the fact that she told me she needed to use the bathroom, managed to get herself across the corridor to the toilet with me, use it without making a mess and even threw the tissue away down the pan. This may sound silly but previously it had been a very difficult thing to make sure she toileted properly and had a bad habit of storing the tissue or hiding it in places rather than flushing it down the toilet with everything else. She washed her hands, dressed herself properly and off we went back to her room.

I picked up on something my father had said too when he visited a couple of days before - that she looked particularly 'older' than she had been. I noticed it myself: she is losing weight, her facial features have slimmed down, her skin is changing. Even her eyes have become grey and misty.

I often wonder whether she knows where she is, or understands why she's there. It's a dreadful thing to think that they might believe that we've abandoned her, or don't want her. She might feel angry or sad at being somewhere she doesn't want to be, and wanting to go home. This is one of the things that gnaws away at me on top of the guilt. But I know I shouldn't feel guilty. People have told me I've done all that I could do and I should perhaps concentrate on other things now. She is where she needs to be and in good hands. The last few months have been exhausting but I feel I've done what I could and in her interests, but I still can't help feeling that awful guilt and sadness about how things have turned out for her. She doesn't deserve what she's been through.

Despite all the problems with memory and behaviour and everything else that dementia causes, she still knows who I am and how much I love her. I wonder though how long that might last.

A Light in the Darkness

I had been dreading these last few days knowing that as soon as the weekend came, I'd be visiting mum. I had been in touch with the nursing home every day or so to check how she was, and each time the nurse-in-charge told me she had been a little more settled that the first week but was still being very aggressive and rejecting help when the staff tried to deliver personal care.

Of course, I still have the memory of my last week, a week ago now, in my mind and how awful it was to endure hearing her scream and wail on the other side of the wall while two nurses tried to clean and change her. My father however had made two visits since then and had experienced her in different moods. He didn't need to tell me how upsetting it was for him as I know just how he would have behaved himself while in her presence - I have seen it myself in the former residential home.

That same dread came over me as we made our way to the home and parked up. Our lad, nearly 11 months old now (and I am guilty that I haven't devoted much time or content on this blog to his development and progress as I had intended, but I guess the situation with mum had been the focus since November) was asleep so my wife stayed in the car while I checked in on my own to see how she was.

When I entered the corridor where the residents are housed, her voice was again the first thing I heard. That same thing that has been with me since I was as young as I can remember, still there all this time.

She was at the other end of the corridor in the second day room. She had half a beaker of milk and had spilled most of it on her trousers. She was at least dressed but wore no socks as usual. She instantly knew who I was and called my name, but was babbling and talking gibberish to the person sat next to her. I lead her back to her room ("Room 3") and found it encouraging that she was at least still mobile and able to get along holding the hand rail. I said I'd help to change her trousers, but she wanted to use the toilet - which fortunately is just opposite her room, so we went together to the door and after some encouragement, managed to get her inside without her taking her trousers down in the corridor. Sounds silly I know, but those of you who deal with this kind of thing regularly know exactly what I'm talking about.

The next surprise was that she also took her underwear down far enough and managed to sit on the toilet properly. Again, doesn't sound like much but a huge improvement on what we've experienced in the last couple of months. She drew her clothes us, washed her hands and out we went.

When I got back into the room with her, she even mentioned her grandson and said his name - which came as a shock to me at first. How did she remember? I know by that time that my wife had taken our son from the car and made their way past the window to the entrance, so she will have seen them.

The next thing was changing her trousers. She complained it was cold and obviously it wasn't comfortable sitting there with spilled liquid on them, so I managed to take them off without too much trouble, and one of the nursing staff noticed me trying to put on the new pair and she came in to assist. Mum managed to lift her leg up for us to put them on - again, another little sign of improvement compared to the last couple months.

The next thing was that she even lifted her feet to me when I wanted to put socks on for her. Previously in the residential home, she'd become afraid and tell me it hurts, but this time she complied without any issue.

Not only that, but she was generally more alert, smiling and spoke English more often with us.

If only each of our visits were like that, then we could at least breath a little sigh of relief and know that something good might be happening, despite all the awful experiences we've gone through in the last months.

Tomorrow is Mother's Day and we will visit again. We must hope for the best and expect the worst. Today may have just been a one-off - we shall never know. But quite honestly, I saw more of my mother today that I have done since the start of the year. She had regained some spark and some life in her that had been missing. It was a good visit.

One Last Visit to the Old Home

Since mum was moved to the new nursing home I had intended to pay a visit to the former residential home that looked after her for three months - not only to return the card pass they had issued me for easy access in and out but to say something of a Goodbye to the staff and residents there.

Yesterday I had my chance and it was a strangely emotional experience. I went in the front entrance, signed my name in the book but didn't write who I was visiting. I passed into the main lobby area and let myself into the wing where mum used to be. I wasn't worried about hearing her wailing or seeing her in a bad state. But there was still the same aroma and temperature about the place which is unique to it. I daren't venture down the corridor to her room. I wonder if they had taken her name from the display at the door. I wonder too if the wet room has been given a good clean and whether anything remained from the little cupboard where they kept her toothbrush and toothpaste and other bits and bobs.

I managed to see some of the staff that had done their best to look after mum. Due to their shift patterns I perhaps didn't get to see 4 or 5 others that were normally there, but they recognised and greeted me straight away which I thought was very nice. I also said Hello to one of the residents who appears more alert than the others - whether she actually recognised and remembered me, or if she just acknowledged my Hello out of politeness, I don't know but that was nice to receive too.

I wasn't able to spend much time in their company but I imagine the mood and dynamics of the group had returned to some sort of normality since my mum's discharge. She was a challenge for them and her presence affected the other residents as well as the staff. What I did feel good about though is that they said how much they missed her. I must admit having a lump in my throat and did my best not to break down in front of them as I updated them on how she was.

One of the staff did point out that it had been a big part of our lives for the past three months, and it wouldn't be easy just to let it go. In this respect, a part of me still wants to keep in touch and visit them now and then.

I look ahead now to when I can visit mum again. I have images and sounds in my head which aren't pleasant and I know the same dread will take hold when I get near the place. I just hope that she's OK and settled and being looked after.

It Doesn't Get Any Easier

I am beginning to dread each visit I make to see mum now. I've said before how anxious I've been every time I park up and enter the home, because of what is waiting to greet me. As much as I want to see my mum and hope she's doing OK, more often than not she is distressed or in some other poor state.

The latest visit we made this weekend was a perfect example of why I worry so much about going. At this new home, after parking the car, we pass windows of residents' rooms before getting to the front entrance, and one of them is her room. As we pass, I notice her in her nighty exiting her room and going into the corridor, with the day room almost opposite. When we get inside, her voice is the first thing I hear. Her nighty is dirty and she is clearly uncomfortable - she is in the corridor with other residents and staff walking around, and she pulls up her nighty, no underwear on, and is asking to be helped. It is a very distressing scene and even after calling after her, she doesn't acknowledge my voice.

It is 10:30 and lots of residents are sat dressed in the day room, else we find them laying in bed in their rooms. We soon learn that mum refused to be cleaned and dressed earlier, so they had to leave her be while they sorted out the other residents. We sit in her room with her but she is groggy and confused. She says she doesn't want to stay there and wants to go home.

Two of the nursing staff come in, unaware that we're in there with her. They've come to attempt cleaning and dressing her. I take our little lad out of the room while my wife stays and tries to help. It's perhaps the single most distressing thing I've heard, if not seen, since this whole thing started.

She is clearly distressed at having people handle her. She screams and wails. It's evident she attempts to punch and kick them. She says she is cold and doesn't like being washed. She keeps telling them she can do it herself, or that she's already washed, but she doesn't know how to. It's a good 10 or 15 minutes of hearing something I've never heard from my mother before - even at the last visit we made to the former care home. It was awful. But what can you do?

When they had just about finished, I was able to make my appearance again, which didn't help things much at all. Even if my wife and I had swapped placed and I stayed in there, I couldn't have done anything. I would probably have been even more angry and upset than I was being outside with my son. No amount of reassuring or attempts to calm her worked. She doesnt' understand if she's told that those ladies are there to help her, and that nobody wants to harm her, and that she'll be better once she's clean and dressed. It's not that she doesn't listen - she simply doesn't understand anymore.

This is something the staff must be challenged with everyday from her, and I imagine more than once a day. It's an awful situation for them and for mum - the poor soul is confused and doesn't understand why she's there and being handled. When she's sat and settled, she appears fine - but talking gibberish a lot of the time and going to and fro beween speaking English and Thai. She does seem to be speaking English more often though.

It doesn't get any easier. That feeling of dread is still with me now, eve after visiting her - I can't shake off the worry and anxiety I feel about how she might be and what she's doing. Perhaps sitting there alone in a chair in the day room, like the other residents, not speaking to each other, just moving around and acknowledging greetings from the staff. It's a sad, sad sight to see.

The Neverending Worry

I haven't seen mum since my visit on Friday and despite reassurances from the manager of the nursing home, as well as encouraging reports from my sister who is often visiting, I still don't feel at ease.

My father too had visited yesterday morning. While mum is apparently settled when sat listening to music and watching the world go by in the confined surroundings of the day room, it's when she needs assistance with toileting and changing that she really becomes a different person. My dad witnessed this himself yesterday - he told me how upsetting it was trying to get her changed, even with help from staff, but they got there eventually. It just goes to show that even though she's been moved to what should be a better home, it doesn't mean her behaviour or habits will change with it - she'll still exhibit the same response when people try to wash or change her, and it's down to this new set of staff to deal with it.

I am wondering also what the mood of the former care home is now that mum isn't there anymore. I wonder whether the staff are breathing a sigh of relief and feeling glad that the dynamics have got back to normal. It's a terrible thing but quite far to say she was a disruptive force in the three months she stayed there. I haven't yet been back but I plan to visit to return my pass and speak with whoever might be on duty. It would also be nice to see, one last time, the other residents there as we got to know who they were, as well as the staff. It would be a shame to completely cut them off seeing as they have been instrumental in getting to where we are today.

Tomorrow I plan to visit mum with my wife and our baby boy. I am dreading it already. As much as I want to go and see her, I am still hugely anxious about how she will be when we arrive. The new place, as I've said before, it not nearly as modern as the former home. I'm worried about the sights and sounds and even the smells that will greet us. It's a different environment with different people and different furnishings and men and women mixed together.

I just hope mum is calm and settled and feeling OK when we get there. I want to be able to sit and hold her hand and give her a hug without seeing her hair messy or her teeth not brushed or with dirty clothes or sticky hands. I guess I still have the memory of the last visit we made to her before she left the former care home, but that plus many other instances will stick in our minds for a long time.

A New Home

I had almost given up on attempting to write anything here, but in the last two weeks there has been progress made at least.

Mum's condition however has gone from bad to worse - we have never seen her in such a distressed and hysterical state as she's been in the last few visits we've made to the residential home. In the time I've been signed off work by my GP, we've had meetings and discussed options for mum's care as the care home, as I've probably mentioned many times in this blog, just can't cope with her or give her the level of care she needs.

We considered whether bringing her home would help. My father and I started to clear space in the living room for a bed, seeing as the bathroom is downstairs, to help with day to day toileting needs and easy access to the bathroom during the night. But, all parties involved - social services, the care home, the CCG (Clinical Commissioning Group) and the doctors that have said that "the patient is not safe to go home", meaning there is a high level of risk in her being at home with dad, even with a care package in place such as having 2 carers visit them 4 times a day.

What this means for dad is that he will, at least for the foreseeable future, have to accept the fact that she won't be coming home, and I doubt she ever will now.

Social services contacted a few local nursing homes to review mum to see if they would take her. One had refused on the basis of not having any vacancies and another had refused because they couldn't provide the level of care she needs. Only this weekend, after I had visited and found her in such a distressing state and moments after emailing social services and the CCG to request a change to her medication that another nursing home called me to say they will accept her, and that arrangements would be made for her discharge from the current care home.

It's difficult to process seeing your own mother in such a miserable state. I felt that awful trepidation when entering through into the area at my last visit, but instead of seeing her sat in the day room, I heard her wailing and crying in her room down the corridor. Dinner all over the floor and desk, dirty clothes, no socks on, and a bed unmade and left to dry out after she had obviously had an accident. Her knees are bruised from throwing herself on the floor in her worst moments. Rejecting even my help to wash her hands and wipe food from her hair and face. She is a frail, scared and broken woman now.

The transfer happened yesterday while I was catching up during my first day back at work. I was very anxious about the move - would she let them dress and move her, would she be non-compliant or aggressive, would she refuse to go outside? Apparently though it went quite smoothly, from what I have been told, and by the end of the day I was informed she was already settling in to the nursing home. It's at least a step in providing better care for mum. It's such a pity it didn't happen when I was off work and available to help with her transfer.

Today, I visited her myself. My sister had visited the home last night and fed back some positive news, and my father has already been there too. I found her in the common room in a settled and pleasant mood. But how long will that last? The nursing home has both men and women mixed together and many of them are mobile. I only hope the episodes that the former residential home experienced with her in the afternoons and evenings don't occur in that environment. I fear that something awful might happen given the amount of people moving around amongst themselves...

But, it's only been a day so far. We need to give it time. I must admit feeling terribly sad as I sat next to her today, in another new environment with new strange faces. Time will tell...

The Reunion and the CCG Decision

It's truly been a week of ups and downs. In my last post on Sunday evening, I was expecting to go to bed, be up a few times in the night as usual because of our poor lad having tonsilitis, to be up in the morning and follow the normal morning routine and then heading to the nearby GP practice for my scheduled appointment with the doctor before going into the office.

I got as far as the GP but came home. I have been signed off work for 'stress related health problems', as well as having a chest infection which is more easily remedied by some antibiotics and rest. It's the first time it's happened to me, but I guess it was a matter of time. I simply don't feel well in myself.

My absence from work has afforded me the time to switch off (as was the intention) and concentrate on things outside of work, but this has still been challening. We're no closer to finding ourselves a new home, so that is very much something still needing to be done sooner rather than later. But, at least our lad is getting better and (touch wood) has actually been sleeping fairly well in the night - perhaps it's just his time, as today (Friday 12th February 2016) he is 10 months old. The problem has been getting him to take his own antibiotics - not easily done when the stuff tastes horrid and the guy has been known to throw everything up, so it's been a testing time to say the least with his illness alone.

On Wednesday my father and I took the chance to visit the care home together to see mum. Thankfully she was settled but still showed signs of being distressed and generally not with it. She did recognise him and spoke to him and even said at one point "love you, dad" which I found rather touching. My dad of course is not one to wail or scream but the tears flowed freely for much of the time there. It was only the second time he had seen her since having his heart attack back in November and it isn't pleasant for any of us seeing how much of her we've lost to the dementia.

When she was settled and sleepy again, we took our chance to slip out quietly without too much anguish. A tough thing for my father to do, but I'm used to it now.

Yesterday, we had some positive news - if you could call it that. The Clinical Commissioning Group had confirmed that they have accepted the suggestion by the mental health team and approved full continuing care funding for mum, for at least three months with a review again at the end of that period. What this means is that whatever care package they put in place and wherever that might be, that the NHS pays for it in full. I had that very same day written a cheque and sent it off the council in response to the bill we received for mum's care up to that point.

That same evening I was lucky enough to check my email to see an invitation from the care home asking me to be present at a meeting with social services and a rep from the CCG to discuss the next plans. I took my father with me and the team discussed what could be possible going forward, as the care home are not equipped to deal with mum's behaviour and have for some time already been finding it very difficult. One other specialist nursing home representative had visited but had refused to take her, because they already had several other clients with similar challenging needs. Another specialist nursing home was mentioned and it became a ray of hope for us - it is the same care home that looked after my uncle some years ago in the later stages of his life, so there was some encouragement that that particular home might be involved in helping with mum's care.

Sadly, the Assistant Manager called me this afternoon to tell me that they took had refused to take mum on the grounds of her challening and complex needs. It has been a blow to us, as there is only one other option left before the council have to look outside of the borough - which means mum will be taken further away and it will be difficult for my father to visit.

We have of course wanted to consider her going home, but this doesn't appear to be the way forward. It makes sense for her to be in her normal home environment, but she has been away so long now that even that might not feel as safe or comfortable as it once was. The fact is that things can't go back to the way they were anyway, anymore.

So, it's another matter of waiting for the weekend to be over with before the council can make new enquiries. Day by day, mum is getting worse and worse. The future looks bleak, but it's a future that is unavoidable.

The Low Point

I feel pretty miserable right now. The last few days have been horrible but only because I succumbed to an illness that left me feeling weak and exhausted and hard to concentrate on anything. Plus, I made the mistake of 'being available' to my Company so got roped into lots of urgent tasks that I made me feel even worse. The last thing you need to do when you're not fit to work is... work. It's really frustrating.

Since my last blog entry, the written report from the full assessment we carried out at the care home had been written up proper and a copy sent to all parties, including my father and I. I had told him at the assessment that it was probably a good idea that he didn't hear much of what was being discussed because it wasn't particularly pleasant. But, he needed to read the report and when I spoke to him on the phone on the evening of the day we had both received them, I knew from the tone in his voice that it had affected him quite a bit.

Until then he had been for the most part ignorant of what was going on since he had spent his 5 weeks in hospital and the recovery from his heart bypass operation. But now, having got over the worst of and getting his strength back at home, the true reality much have struck him hard. Even I haven't ready the report from start to finish. I know what's in there but I had picked up the most pertinent points after the very first skim-through. Regardless of what's in there, we all - social services, the care team, our family and of course mum herself - await the decision from the Clinical Commissioning Group, or NHS panel, or whatever they should be called, as to whether she stays on where she is with additional support or gets moved to a nursing home. It's all about the money - if they don't approve and she doesn't get help with the funding, I don't know what happens next.

As for me, I'm pretty much close to breaking point as I write this. The middle of last week I felt absolutely rotten at work and had been under great demand from my job. Wednesday evening was the start of a couple of days of a high fever and a chest complaint. I don't know what it is but I had already booked an appointment to see the GP tomorrow in order to go over my health in general, given that I've been under a huge amount of stress, have lost weight (5 kilos or so) and am generally feeling that the last couple of months seem to be catching up with me - something the district nurse pointed out to me at mum's assessment. Big mistake of me to offer to help out with things at work - I could hardly concentrate on the tasks that normally demand some thought and attention to detail and to follow proper processes. How are you expected to do that when you're sick? I should have turned off my laptop and left it alone that Thursday.

The next two nights were pretty awful - I haven't felt that unwell in a long time. I'm feeling much better today but yet another problem has arisen - that our lad has tonsilitis. He had finished a round of antiobiotics after a GP had said he had a throat infection. He started feeling better when I started feeling ill, but the last couple of days he's been ill himself again. So, off we trot to the NHS Walk In Centre today and thankfully he's seen pretty quickly by a doctor. He has tonsilitis. So, once we're home we try to give him some of his new medicine but what does he do? He throws it up. We change him (and ourselves) and try again and guess what? He throws up again. It's a difficult thing for us to have to cope with, especially with everything else going on.

I haven't seen mum since last Sunday and spoke - with some difficulty as I was pretty sick that day - with the mental health doctor who was visiting mum and who wanted to discuss with me the matter of changing her medication. They are going to try a small dose of an anti-psycotic drug to help with her mood, which in turn should help the care staff be able to give mum the care she needs, rather than being non-compliant or rejecting their assistance. So, I can imagine her being even more groggy and less and less of the person we all use to know her as. But, it's something we have to try, for the sake of her wellbeing as well as the wellbeing of the care staff and other residents.

I tell you, I wouldn't wish this on anyone. I know my wife is struggling to stay positive too. Afterall, she's worrying about me worrying about everything else, and it isn't easy on her either. I just hope the GP bothers to listen to what I have to say tomorrow as I don't think anyone would be able to carry on like this without breaking down completely. Then again, what could they do anyway? Send me off with a packet of paracetamol no doubt, and I'll be going straight into the office afterwards, still feeling pretty poorly I'm sure and tired from lack of sleep due to poor little man not being well, and with the weight of everything still happening hanging over me. What joy.

One good thing to happen lately is that dad made the bold step of visiting the care home to see mum himself for the first time. I won't go into detail but apparently it wasn't as bad as we might have expected. I'm glad he did it.

11 Weeks

It's now 11 weeks since dad was taken to hospital and mum had to go into the care home. They still haven't seen each other since and the longer time goes on the more worried I am about how he'll react seeing her and how she'll react seeing him - and that's even if she remembers who he is.

My wife and I have seen that her condition has gone downhill pretty fast. She's clearly not the same woman dad knows or will remember being back in November. Dementia is taking away my mum and it's a difficult thing to witness. More and more often now she speaks in Thai and doesn't use English. At some point this may be another thing that she loses - the ability to communicate with us and the carers. She can no longer read or write. And I've seen how she often reaches out or tries to move things that aren't there - a certain sign of her mind deteriorating.

I had called ahead before today's visit to see how she had been in these last few days, and the report wasn't good. She had been crying and wailing again, and aggressive towards the staff and other residents, and also doing things like emptying the bins in the day room and moving furniture around. As usual, that same sense of dread and anxiety takes over me when I enter the building and go through to the area where she now 'lives'.

I do feel guilty about not having spent much time with her during our visits. I do pop in to see her during my lunch breaks from work, but cannot stay longer than 30 minutes. After work is often difficult with our lad's night time routine and how difficult it has been lately getting him to eat anything and then settle down for the nights. Visits on the weekends can be awkward too as our lad is often restless and needs attention (feeds and nappy changes).

We did however manage a smile and a laugh today. It meant I could leave her in a happy mood and the staff could get on with preparing the lunches without too much drama. What I do intend to do soon is spend a good few hours with her, instead of 30 minutes here and 45 minutes there. This will allow me to see how my presence might affect her mood and how the staff go about providing the care they're meant to.

I also had some good news today from the Continuing Care team. The report from the assessment has been written up and will be sent on to CCG as a priority, but we've no idea how long things will take before the panel make any decision. The local council social services are also waiting on this decision before a discharge plan can be made.

I like the fact that the lady from the Continuing Care team was conscious of my own well being given the amount of stress and anxiety we've been under these last 11 weeks. She mentioned how that if mum were to go somewhere that provided better specialist care, that I may feel more relaxed and less anxious about things, at which point I might even become ill myself due to the weight of the worry taking a turn. I have lost a fair bit of weight and suffered a stomach bug recently, but I feel pretty well in myself at the moment. Work and daily life still goes on.

Things Finally Settling Down

For the first time in a long time I am starting to feel positive about the future, despite the challenges and worries we've faced about mum's condition and being unsure about what the best next steps are in terms of her care.

Today I visited mum and saw her for a brief time. My half-sister, who I mentioned all the way at the start of this blog, was there too. She has been able to visit our mum more often recently and is having a positive effect on things - both for mum and the care home itself. My sister works herself in care services so understands the needs and challenges of those with disabilities. To be honest, it was a huge relief and massive boost to be able to meet up with my sister again as we just haven't had the time to catch up.

We have considered having mum go back home with dad, provided they are supported in the best way possible. It's been on the cards for a long time now to make changes in the home and to have a bedroom downstairs (seeing as the bathroom is downstairs too) and changing the bathroom into a wet room to make things easier for them both. My immediate concern about that was how they would both manage on their own together again. Mum has been taken away from the environment she has spent the best part of 38 years of course, and anyone from the outside looking in would say it's probably the best place for her.

But now, things are different. Her care needs are very particular, as witnessed and understood first hand by the care home. I had a work with the Senior Care Worker on my way out and she mentioned that it just wouldn't work having her at home. As much as everyone might like this to happen, in order to give mum the comfort and familiarity she needs, it wouldn't be possible for dad to look after her, even with regular care from trained visitors.

The reason I feel positive about this is at least it's an option that we've considered that probably isn't going to happen. It's not a pleasant thought to accept that mum will need full-time specialist care, and to not be at home, but this is just the way things are. Dad will naturally be very upset about how that would pan out, but it may well be unavoidable. He's told me himself how much he misses her, and that is completely understandable. But he just won't be able to cope anymore.

My wife's jury service is finally over, so at home we are returning to some sort of normality. Our 9 month old lad though hasn't been well the last few days. He's not eating properly and been pooping for more regularly - and it's been runny and messy. He still doesn't settle well during the night, but last night in particular was an example of a relatively good night for us all. He finally settled around 9pm and only woke around 2 o'clock in the morning. But, he fell asleep again and didn't wake again until around 4 o'clock, at which point he guzzled down a bottle of milk. If this were to happen more often - which we know it won't as no two nights are ever the same - then we'd both get much more needed rest.

Next week could be interesting. We should have a full written report off the back of the full assessment undertaken recently by the Continuing Care team, and social services will be on hand to look for appropriate care services for mum if the right funding is approved.

Jury Service and the Stomach Bug

My stomach isn't great. I was up most of last Friday night into Saturday morning running to and from the bathroom emptying my guts out. When I thought there was nothing left, my stomach still managed to give up some more. I haven't felt quite the same since but hey, I've lost another kilo, so I guess one positive to come from this nasty stomach bug or whatever else it might be.

This week is the second week my fie has been on jury service. Was a massive inconvenience it has been. For the first 3.5 days of last week I had the benefit of the in-laws being around but they have since gone home. Friday was my first day alone with the boy and it wasn't a bad thing at all. We coped. We got through. Didn't need mum to feed him a bottle of milk and put him down for a nap - I somehow managed it, alongside doing work from home and trying to keep the place tidy. It was likely all the crap I ate that day, with no in-laws and no Mrs around that made me sick that night.

Despite being thoroughly ill we managed to visit mum over the weekend. I always feel bad about not seeing her more often seeing as she's only down the road from us. Each now we do visit now, we are usually finding her dozing off in one of the comfy chairs in the day room. I wonder actually if she's even managed to get outside for some fresh air...

The Continuing Care Team are now writing up the assessment. A copy is due in the post both to me and my father - I plan to warn him in advance of this coming through so that he isn't entirely distressed by what he reads in it. Although he was present at the assessment, he didn't hear much of what was discussed and as I said before, it's probably better he didn't.

I had an update from Social Services too. Everyone is waiting on approval from the NHS for full continuing care funding, which I understand would mean the council can look for a suitable specialist home - a nursing home, from the sounds of things - that would be able to cope with her needs. This means that dad will likely be home alone indefinitely... I'm not sure how to process all of it to be honest.

Right now I have a load of washing on the go and a 9 month old baby boy wailing at me for attention. My stomach is queasy and my head not straight after having not slept much last night - due to the poor lad being poorly himself and puking up his milk at his bedtime, prompting us to do a round of changing bed lined, making him a bath, redressing him etc. Quite a chore when you are ready yourself for an early night - I was so tired yesterday.

And if that wasn't enough, we're trying to move home. I must be a sucker for punishment.

Apart from that, everything is hunky dory. It's also my 37th birthday tomorrow. What a year my 36th year was. What is to come in Year 37?

The Dreaded Night-time

While everything has been going on with dealing with mum's dementia and social services and assessments and worries over visiting the home and keeping tabs on how dad is doing after his op, my wife and I still have our nearly-9 month old baby boy to look after.

On the whole he is a very happy, smiley, big and strong baby boy. The issue we're still struggling with is his sleeping habits. At this stage, I understand babies should be sleeping through the night or at least only waking up once or twice, but our boy can be up five or six times each night.

My wife and I haven't  had a good night's rest since last April. I expect we won't be able to for a long while yet, and it's a daunting prospect. You certainly get used to it and deal with it, but going to work tired isn't a good thing and wanting to get some sleep as soon as he drops off around 8:30 or 9pm means you hardly have time to yourselves. The problem is he's far too comfortable sleeping in the big bed and doesn't like his own cot.

I don' t know where we went wrong in the past but this means that if he does drop off and we move him into his cot, he is awake as soon as he touches the thing. He cries and wails. It's really not a pleasant thing to have to handle in the middle of the night when you can hardly keep your eyes open. The pressure of course is more on mum and you can only do what you can do to be there and support them both. I do at least have 'my jobs' - like sterilising the bottles, giving him breakfast in the morning, changing nappies and bathing him a few times a week, so there is a bond the two of us have developed.

Thinking back to before he was born, we had both been worried about being good parents and knowing what to do. Thankfully, parenthood came quite naturally - afterall though you can't do it any other way, as the little thing is solely dependent on you. Maybe his poor sleeping habits (sleep association is a phrase that comes up a lot when we look for solutions) is a result of us being a bit lacklustre as parents?

As a result, I'm beginning to dread the night-times. Sure, he'll drop off after a bath and a bottle of milk but soon enough, he'll be up and wailing again. You go to bed feeling good and happy but in the night time, it's really tough. Each and every night both him and us are up constantly.

But, perhaps it's a phase. Perhaps it's just his age. Maybe it's too hot or too cold for him. Maybe he's uncomfortable about something.

In the past week, he's been able to stand up on his own, provided he is supported by something. A huge milestone. At some point he'll manage to stand up on his own unaided and then he'll be walking. Daytimes might get more difficult for us too. People keep telling us things get easier but goodness, it feels like it's only got harder and harder.

And I haven't even mentioned my wife's Jury Service, which has started this week.

A Tortured Soul

I feel pretty drained right now. I have felt very anxious all day waiting for the time to come to visit the care home to be present at an assessment for mum. It was intended that it be the first time mum and dad would see each other since he had the attack (a whopping 8 weeks ago), but it didn't quite happen on this occasion and probably best that it didn't, even though dad would have liked to see her. Given the recent condition she's been in, it perhaps would not have been a good idea.

I don't feel any relief from the meeting as there are still quite a few things that need to happen. There were a bunch of different people present, which I was encouraged about. That and the fact that they all want what's best for mum, for my dad, and for the current residents and staff.

There was a district nurse from the Continuing Care team. She advised that based on the notes she had already reviewed, she understood that a full assessment was required as opposed to whatever other lesser-degree assessment is normally given. She led the meeting and took lots of details that she needs to write up a report on before sending it to 'the panel', who if I understand correctly, give the yay or nay about what next steps we can or cannot proceed with in terms of mum's care.

There was the lady from social services that I have been in contact with regularly over the past 8 weeks. She is key in getting extensions of stay and appropriate funding and other approvals from the council. It was very nice to finally meet her.

There was a chap who was a mental health social worker, although I'm not entirely sure what team or department he was from, but provided a thorough and useful report to the other people present after having spent an afternoon with mum very recently.

And of course there was the Senior Care Worker and Assistant Manager from the care home, who provided everyone with the key information and feedback that was so important for the report, which will in turn affect how things pan out from here.

The key issue is that the care home can't cope.

It was not a pleasant experience having to sit through some of the things they had to report about mum. I had known about them to a degree but to have to have someone need to write up on it is another thing. I'm glad dad is hard of hearing as it would not have been good for him to know all of what was being discussed about mum's behaviour.

The assessment followed 11 categories that we needed to work though. These included Behaviour, Cognition, Psychological and Emotional Needs, Communication, Mobility, Nutrition (Food and Drink), Continence, Skin (including tissue viability), Breathing, Drug Therapies and Medication (Symptom Control) and Altered States of Consciousness (ASC).

At each stage, different aspects of mum's care requirements were brought to light and built up a picture of the requirements that should be suggested going forward. What is next is out of my hands. I'm very conscious of mum's own safety and those of the other residents and the staff there - they simply can't cope but will have to carry on as best they can until any decision is made to move her to another facility or for the care home to receive extra help.

All in all though this is likely to mean mum will stay put for at least another month. If things get so bad that something drastic happens as a result of mum's behaviour... well, I really don't know what is suppose to happen. All that anyone can do now is carry on as they have done and wait.

As I say, I did feel encouraged about the fact that so many people had come together with the common goal of doing what's best for her. The care home assistant manager had commented how mum was a tortured soul, and that the whole thing is very sad, as they know themselves just as I know that mum is a very cheerful and affectionate lady. It's just proof of how horrid this dementia thing is.

A Happy Start to the New Year

It's amazing how things can change from one day to the next. Yesterday, seeing my mum in such a state put me in a sorry mood and I went to bed after seeing in the New Year with the other half and the in-laws thinking that mum might too be awake, but blissfully unaware that it was 2016 and wondering what the noise might be outside. I imagined her getting out of bed, confused and scared at being somewhere still unfamiliar, despite having been there the best part of 8 weeks, and even wailing or calling for me like she has been lately.

Each bed is apparently alarmed and the staff know when the residents move out of their beds. Whenever we've tried to put mum into bed for a nap at our place, we too suddenly find her appearing silently at the living room door 5 minutes later, having not settled and following her instincts to have a wander. It's quite disconcerting having her pop up suddenly like that. This is what happens where she is now. The nightime shift have had quite a challenge on their hands.

Today, I was in two minds about visiting her yesterday. I even said to my other half that I don't think I could face seeing her, especially if she was in the same agitated state.

This morning we visited my father who, thankfully, is making a good recovery and getting back to a fit state. It's amazing that not long ago, he was cut open and had his insides fiddled about with. He had a scar running all up his left left from his ankle to his groin and another on his chest. Pretty gruesome. But, he is getting back to being more mobile, getting things straightened out in the house, and looking and sounding more like his old self. I make a point of not mentioning too much about mum when we talk and haven't told him exactly how she had been the last few days. To go into detail wouldn't be good for him right now - but of course we do have the assessment next week which I'm dreading already. It'll be the first time they'll have seen eachother since that Tuesday morning which triggered everything since then.

I just hope social services and/or the continuing care team manage to put together the best and right package for them. Part of me though wonders if that means an even longer - or even indefinite - stay in the care home...

Today, I actually held my breath as I parked up at the care home. I was alone today. It's quite a challenge with our lad wriggling and being restless as he is now. The main entrance leads into the small reception area where you sign the visitors book. and you need a card to get through to the main foyer inside before going to the separate wings / suites. I've been given a card to use temporarily so that someone needn't have to buzz me through each section, so it makes it easier for me to go straight in and see her. I pass into the main central area, with a hairdresser and other offices, and take a right beyond the stairwell to the suite where she stays in with 8 or 9 other residents.

The first thing I do as I approach the day room is listen out for her voice. If someone were to be distressed or crying, it would be her. I remember that evening I visited and found her quite hysterical, and it's not a nice feeling. The next thing is to look at the row of seats you first see when the door comes into view. That's where she usually is and sure enough, there she was today.

She looked so much better. She even stood up to greet me and I gave her a big hug. It might sound silly to some people reading that but it makes all the difference in this situation. Her mood was totally different from yesterday. Clearly she must have been able to have a good rest after being so exhausted and upset. It was a pleasure just to sit and stay with her for a while, enjoy a cup of tea together, show her some photos on my phone (she forgets or doesn't realise she has a grandson, and never remembers his name), and just let her say whatever she wants to say.

What will make another difference - and what I'm kicking myself for not doing sooner - is making her room a little more homely. All the other residents have a lot of personal effects in their rooms. They are of course permanent residents but mum's room is still bare, save for a few photos we added there early on. One of the members of staff, a lady we've seen only a couple of times before but has been particularly helpful and considerate towards mum, suggested I take some items from home to keep there. Photos, blankets, pillows, anything that she would normally surround herself with.

We hadn't considered this before, besides bringing her clothes and necessities, and the other staff members hadn't mentinoed we do this either. She was of course only meant to be there a week. At least it will make her room a little like her own environment back home with dad. There are a few items that I know I could bring to make things more familiar to her, and it might help her settle down to sleep, or to help her not feel so afraid whenever she wakes up wondering where she is.

Of course, hindsight is a wonderful thing and proves that understanding dementia and how to handle it isn't something easily done. But today's visit has at least been positive. As we sat there together, she nodded off in her chair, and I took the opportunity to leave her in that comfortable state. I was also at least assured that the members of staff on hand were those that mum felt very comfortable around. Perhaps this is a very important thing too - the staff who are looking after her at the time. It certainly made a difference today.

We can only wait to see how she is the next time I or we visit her.