Bed sores – a pain in the arse

I haven’t posted for sometime. Combination of lack of time and effort but also didn’t have the urge to rant. Well I do now.

Quick background catch up. Roughly three weeks ago mum was getting out of bed, aided by the carer, when she felt unwell. Carer called and by the time I got home from work (thankfully work is very supportive) she had also called 999 as mums breathing was shallow. Couple of minutes later fast response car turned up and the outcome was that mum had an irregular heart rhythm. Off we went to RUH. 

A day spent in A&E followed (portable battery helps keep the phone charged whilst I keep an eye on work emails) resulting in mum being kept in as they wanted to monitor her on new medication to thin the blood. Next day they released her and mum came home and all seemed well. Mum was happy and we thought back to standard routine. Within 1.5 hours, mum had slipped in the bathroom and fractured her hip! Off to RUH again and this time a longer stay whilst they operated and replaced half her hip.

Surgery went well and the surgical team discharged her. This is where the fun starts.

Having Alzheimers, diabetes and a heart condition is not a good combination (if there such a thing), especially in a strange environment. I realise that hospitals are under a lot of pressure and budgets are being cut etc but I also understand the call for better management to help ensure that the budget is spent effectively. I am not going to get into the politics of this, I have friends and family in the NHS but I can see with my own eyes things that are inefficient.

My biggest observation is a lack of joined up care, with poor or no information between teams and so time and effort is wasted on finding facts. Worse when facts are wrong and assumptions made about a patients needs.

Mum was eventually transferred to a nursing home in Chippenham and again lack of quality information between the various teams involved. When visiting mum was lethargic and unresponsive. The response from the care team was she had hyperdelerium (had to look it up). However when we asked what her sugar levels were we found they hadn’t taken them and when they did the level was 2.8. This is very low and previously has resulted in a trip to RUH for hypoglycemia. So as they ran around trying to find a chocolate biscuit etc we went and bought some lucazade and managed to get her sugar levels back up.

Over the next week we continued to deal with care issues. The team mentioned that mum needed help eating, well when shes lying horizontally in bed, she wont be able to feed herself. “Shes not very mobile” and yet we managed to get her up and walking with a frame on her own with not that much effort.

The most recent issue is she now has a bed sore, again when you leave her in bed for hours on end through the day, or she goes to bed at 7pm and stays there for 14+ hours what do they expect. Again this care cycle could easily result in mums health regressing and ending back at the RUH where she occupies a bed, needs to be seen by Drs, Registrars, Consultants etc. She will now need regular district nurse visits to come out and dress the wound, again unnecessary care costs resulting from poor care management (in my view).

So, Sonia and I have agreed that we need to get her home as we can provide a better level of care as we understand her requirements. Luckily my boss/company is supportive and has allowed me to work from home for a bit so I can be with mum during the day and continue her rehab with regular walks around the house and leg exercises, better diet and therefore get her diabetes back under control and most importantly for mum, back in her home in surroundings that she is used to.

Its a new challenge for Sonia, Ella and me but its got to be better than leaving the care to the professionals!

Daily Conversation

I have not posted for some time. Mainly because I have not felt the need to. We continue the roller-coaster that is caring for someone with dementia and I guess we are getting better at absorbing the low points.

The other day was particularly frustrating however and we seem to be in a funny place at the moment. Could be the heat, could be the next stage of dementia, could be water infection or who knows what. The frustration stems from daily conflicts between us.  We try to keep things simple and consistent for mum with the focus on keeping her safe and healthy. However this becomes trying when she does not always co-operate or her mind is playing games.

The following is a fairly accurate word for word conversation mum and I had the other day. We have these on a daily basis, often along the same subject and often with no conclusion.

“Hi Mum how are you?”

Silence

“Hi Mum, you ok?”

“Yeah I’m ok.”

“Where’s your water?”

“Well it should be here, hold on… oh um the chap that called in, he took it.”

“What chap?”

Now I’m starting to worry. Buglers, muggers etc all happily let into the house probably.

“The one that was here this afternoon.”

“Ok, I’m pretty sure no one was here.”

“Yes they were.” “Well if there wasn’t anyone I must have put it in the kitchen when I went out”.

“Went out! Where have you been. You know you should not as you can’t walk very well unaided. Didn’t you see the signs on the front door saying don’t go out?”

“Yes, I ignored them. I went out and down the road.”

So further panic and I check the Ring.com front door bell camera to see who has called and if mum went for a walk. Luckily neither event had happened.

“Mum you haven’t been out and no ones called in. Don’t worry about it, just get your water cup from the kitchen and drink some as you haven’t drunk all afternoon and it’s very hot.”

Mum gets up and makes her way into the kitchen. 2 mins later comes back, no water.

“Mum what did you go into the kitchen for?”

Silence but she continues to walk to her chair in the lounge.

“Mum what did you go to get from the kitchen?”

Silence, starts to sit down

“Mum don’t sit down, you’ll only need to get up again.”

Sits down.

Mum where’s your water?”

“In the kitchen.”

“Ok so you need to get it and drink it.”

5 mins later after getting her water cup and sitting back down, mum gets up again and goes to the loo. After a while I hear the stair lift coming down.

“Mum come into the kitchen so I can cut your nails over the sink.”

Mum walks slowly into the kitchen.

“Mum have you got a pad on?”

“Of course I have.”

“Ok I’ll check, …no you haven’t so you need to go back up and put one on.”

10 mins later she comes back down. As she walks back in to kitchen –

“The electrician that was here this week, has he finished?”

“Mum the electrician was here about 6 months ago.”

“No he wasn’t, he was here a couple of days ago.”

“Two days ago was Sunday and he was here in February, it’s now July.”

“Is it Tuesday then, not Thursday?”

“No Mum, what do the day cards say?”

“Tuesday.”

“So what day is it?”

“Well I thought it was Thursday.”

Sorry that a convoluted conversation isn’t that interesting to read, or funny or entertaining but this is the reality of caring for someone with Dementia.

Dementia is not just a memory issues, it’s a brain processing issue. Logic and reason don’t exist as you and I see it. A normally functioning brain will process things automatically. We do things with out thinking necessarily about them. You do and say things with out a thought as it’s just instinct. Dementia seems to stop this automatic process.

Well that’s how I see it in Mum.

With an ageing population more and more of us will end up like this. Look around your family and friends. 1 in 10 of us by the age of 65 will get it. If we are lucky enough to get to 85, 1 in 6 of us will get it.

Be nice to your children! They will end up dealing with it one way or the other.

Father’s Day

It was father’s day recently. Ella was lovely, with hand made cards and presents.

However over the last couple of weeks I’ve questioned whether putting my daughter and wife in the firing line with mum, means I am a good father/husband.

Now this blog post isn’t a self pitying, wow is me, friends send me lots of messages saying its ok,  you are doing a good job, keep going etc but a true reflection of actually how difficult things have become and the reality of what I’m thinking.

Before I off load I have to say I know none of it is mums fault. Alzheimers changes you, mainly how you behave. Carers have to deal with it. We have to deal with it. Again, this blog is partially to help when (not if) any of our friends find themselves in a similar situation.

All of us deal with stuff. Work stuff, relationship stuff, baby/kid stuff or health stuff (yours or someone else’s). Thats life and we get on with it. We get depressed, we get upset, we get angry. We get home and off load to someone, the other half usually and if they are good, listens, reassures and tries to provide solutions.

So everyone reading this, remember that worst day. Picture getting home ready to explode at the smallest thing. Then you have to deal with someone that is has basically lost all the basic controls that an adult has, mentally and physically.

You have to get a cup of water coz its been left in the kitchen all day and its one of the hottest days of they year and dehydration makes mum even more confused. You say it again, “please remember your water”. “Are you wearing a pad, have you washed your hands, yes its Tuesday, no Ella isn’t swimming, yes I’m Tim, no the dog is not out with Derek, shes in her bed and if you opened your eyes you’d see her”!

So you are now more wound up. You then see a little smirk on her face and thats it you lose the plot. Is the smirk because she realises what shes being like. Is there still an element of being a pain that shes likes and because she can. You have to walk away but the frustration and anger is obvious to everyone around you.

Next you are having a shouting match with your ten year old daughter about nothing only to find out shes also really upset and struggling living with mum. Shes had to deal with finding mum trapped in the downstairs loo and not able to help. Shes been worrying that when shes on her school residential this week that something is going to happen and she won’t be at home after school to help mum. Thats when you really feel guilty.

How can you be a good father when you 10 year old is seeing stuff lots of adults don’t want to see or deal with.  She should be having the time of her life having fun. Last term of school before secondary, SATs done and a week away from mum and dad on a school trip and shes worrying about her Nan. Yes its lovely that a 10 year old thinks like this and shes a tribute to how we’ve raised her, still doesn’t make it right.

How can you be a good husband when your wife is being the principle carer for your mum and has to deal with a load of other crap outside of home as well. As a bloke (sorry feminists out there I’m old school) its my job to protect my family, to provide and keep them safe. I’m not saying women can’t or don’t do that, its just the way my brain is wired.I still hold the door open, I like to pay for dinner and I walk on the outside of the path to stop Sonia or Ella being splashed by a car.

I don’t think I’ve experienced this many ranges of emotions in such a short space of time in my life. What makes it worse is, its not going to get better, its not going to get easier, only harder. The frequency of mum confusing me with my dad is slowly increasing. At some point we will have to make a decision about continuing to care for mum with everyone’s best interests at heart.

But what is the trigger point. How many more tears does it take, or shouting matches, or just the sense of depression hearing the same thing over and over again, trying to make mum do things differently. To wash her hands, remember to drink water or to stop making that shuffling noise across the floor because she cant walk very well.

I wonder if Alzheimers is one of the hardest conditions to care for (I know its not a competition). If mum was physically disabled you wouldn’t even think about trying to change her, or get frustrated coz she had an accident. Mum just looks old, still spends time at home alone, watching TV and takes herself to the loo, chats to people etc. There is nothing obviously wrong with her and maybe thats actually that hardest part for us.

Remembering she can’t remember, that her brain doesn’t work properly.

Ironic really, we have a memory problem that makes caring for someone with Alzheimers even harder. X

 

2 weeks forward, 6 months back

So our first 2 week holiday since we moved in with mum. 1 week in Iceland and 1 week with an awesome couple in Oceanport near New York. Lots of planning and a big surprise for Sonia and Ella. A 40th birthday present but also as a big thank you to everything they have done for mum over the last year and hopefully something good to remember when we have bad days with mum.

Mum chose to stay in a nursing home whilst we were away, which we all thought would mean she would be well cared for, safe and engaged through regular contact. Well the holiday was amazing and a life long memory of fantastic sites and memories. The return home and collecting mum however returned us to reality with a bump.

2 weeks away and mum is a different person to the one we left. Weak, lethargic and memory shot to pieces and no clue as to why and therefore what to do to improve the situation.

Today was the first full day at home. Carer came in as usual first thing to help mum up, only to find her lying awkwardly across the bed. Her leg muscles weak and unable to walk on her own with out being support by a frame and the carer. 45 minutes to get out of bed, through the bathroom and dressed. I knew I couldn’t leave her so Sonia took Ella to a different set of awesome friends (Oceanport is a bit far for a days play) and I stayed with mum.

Its really hard to describe how she was but seeing her basically zombiefied at the breakfast table, only eating when prompted is quiet scary considering how we left her only 2 weeks ago. Nearly an hour later mum had finished her two Weetabix and toast. I had managed to get an emergency Dr appointment so we needed to move. Unfortunately no smoking gun so the Dr could only take bloods and we wait the results.

I stayed home, explained the situation to my boss but with a company re-organisation going on at the moment and redundancies its not the best time to be off. However, company has always been good with this kind of thing and at the end of the day family and friends are more important.

My day was spent working from home with mum not really responsive. I’ll say here, there was a moment when I did have the thought, is this mum giving up, was 2 weeks in a care home too much and depressed her. There was a time when she was very still and very quiet in the arm chair the worst thought came into mind. Then she started snoring so all was well.

Sonia is off tomorrow, I’m working from home Friday and then its the weekend.  Then its back to work and we both can’t really afford to be at home all day, chaperoning her. The trouble is it could be a multitude of issues.

Dehydration – we constantly nag mum to drink water but the care home probably didn’t.

UTI – makes you wobbly

Eyesight – if you cant see properly you don’t want to move and become really hesitant

Dementia – being away for 2 weeks could have reset her memory about the things at home. What was second nature, she has to learn all again

Stubbornness – a bit like Sophie (the dog) when she was put into a kennel when mum and dad went on holidays in the past. She used to sulk on her return home to almost punish them for leaving her behind. Mum might just be annoyed that she had to spend time away in a care home and is playing hard ball to ensure we don’t do it again!

So watch this space for the outcome as this could be a huge decision time as mum cant be left home alone in her current state. She will fall over and she will hurt herself.

Thank you to all our friends and family that continue to support us in all the different ways that the do. Guinea pig sitting, holiday hosts, child minding, words of encouragement, other things (you know who you are) and just being there for us. It ain’t easy and today was particularly hard.

 

Water, water everywhere but not a drop drunk

So yesterday was the hottest day in the UK this year.  Even though I’m ginger I still like the sun and heat and luckily I’m not a complete albino so can survive some UV without becoming a frazzle.

However as everyone should know, the very young and elderly tend to be more susceptible to heat waves and therefore extra precautions taken. With this in mind we thought how the temperature would affect mum yesterday. When someone forgets things however it makes preparations harder.

Clothing – all good here. Sonia sorted a thin top and skirt for mum, rather than her usual top and cardigan and trousers.  Carers simply help mum get dressed in what ever we leave out the night before.

House – windows open all round, doors open and curtains pulled slightly to keep the direct sunlight from landing on mum on the sofa. Not much of a breeze through the house but at least the heat was off.

Water-DrinkingWater – now mum always has a glass of water in the morning to help her take her tablets. The glass normally moves with her on the trolley so its available when she’s sitting on the sofa. On Monday we used a 500ml bottle filled with water to give mum easy access to extra water to top up her glass through the day, with lots of reminders to get her to drink.  Monday evening and the bottle was nearly empty – success!!!!

Yesterday was hotter still, so we repeated everything on Monday, again reminding her to drink the water and highlighting how dangerous it could be if she became dehydrated. I decided to call in at lunchtime (luckily I work 5 mins away) to check that she was OK.

The water bottle hadn’t been touched and the glass from breakfast still with the same amount. Basically mum had forgotten all the advice, requests and nagging to drink the water. She was lethargic and clearly not good.  So with more nagging, fresh water provided, mum was made to drink several glasses of water. With a flea in her ear I left her to go back to work and hoped she would comply in the afternoon. Not much fun leaving her in that condition, worrying that her memory would fail again and not drink.

I arrived home after work and found the water untouched. Her neighbour had popped in during the afternoon so at least a cup of tea was consumed but not the water. I was not happy. Mum not good and struggling to do anything. Paracetamol given as she then told Sonia she had a headache (wouldn’t tell me, she felt fine), most likely as she was dehydrated.

So dementia or old age memory loss or simply stubbornness not only gives me and Sonia a headache. Yesterday, in the heat it gave mum a headache, literally

Let sleeping dogs lie

What do you do, when reason, logic and common sense can’t be applied to someone due to their own stubbornness and personal choice about when to go to bed.  The answer, not a lot.  This is further compounded by the lack of memory around recent events to help with the discussion where common sense could be called in to give some justification.

First some back ground to this particular issue.  At the weekend, Sonia, Ella and I went to London for two days. The preparations to ensure mum was looked after took some planning. District Nurses coming in Saturday and Sunday morning to administer insulin (8 units and not 22 as prescribed which was one disaster averted) and an extra carer in the evening to help mum into bed.

Now mum has previous for not making it to bed. When we were not living at mum’s we would call round at 9pm to act as a trigger and to provide assistance.  Typically mum would be slumped over at an angle, fast asleep on the sofa with the TV on in the background, not that you could hear it for the combined snoring of mum and Sophie (chocolate Labrador). On occasions when we haven’t been able to call in, mum was found by the carers in the morning still on the sofa, or worse on the floor where she had been able to get up again. sitting on the sofa is not good for her back, her swollen legs and a host of other medical conditions, let alone simply not being comfortable.

Let sleeping dogs lieNow that we have moved in, the stress related to mum not making it to bed should be removed as we can make sure she’s made comfortable every night.  The time she goes to bed can also vary depending on how tired she is or what’s on the television. However when we are not there, the risks come back and this weekend, the stress came back.

For whatever reason, mum decided not to go to bed when the carer came to help her up on Sunday night. We arrived home late with an ill Ella, fully expecting mum to be tucked up already and therefore not to have anything to worry about, only to find her sitting on the sofa oblivious to the impact her refusal would create. This is where mum’s stubbornness and personal choice comes in.  We can’t force her to go to bed (and we don’t want to) and the carers definitely can’t. We just wanted her to work with us and support the process.

Rightly or wrongly I was annoyed, I was frustrated and I tried to talk to mum to get her to make her see why. Mum didn’t understand why. In her eyes she had done no wrong, its was her choice and if she wants to go to bed later then she can. The fact that her eyesight means she can’t see things as well as she needs to wash and is unstable on her feet to get undressed is forgotten about, let alone the risk of falling sound asleep on the sofa again.

This weekend was the first trial of time away from mum and we fell at the last hurdle.  Future nights away will now generate stress for us as we could have a repeat performance.  If mum refuses to go to bed what can we do? I have a two week holiday planned for us in August and I want it to be special as its Sonia’s 40th. The last thing I want is Sonia worrying about mum for the weeks leading up to the holiday and during the two weeks we are away.

Two possible solutions, the carers call us, or one of the family when mum refuses to be assisted to bed. We can then remind her about the risk of falling asleep on the sofa and appeal to her common sense with a reminder of previous issues that her memory has misplaced. Alternatively a carer is employed to sleep over and therefore replace us in the house and assist mum up when ever she chooses. Obviously one is more expensive than the other, and I know mum won’t like a stranger sleeping over.

At least there are options and that’s probably the lesson to take away from this. However dark and frustrating things get, take time out to review and try something else as there are always options.

Chocolate Wars

When a child doesn’t get the one thing they really want, they have a few options available to them to get their own way. Tears, temper tantrums, strops and even storming off upstairs to their bedroom with a loud slam of the bedroom door.

Parent tip – fit new carpets so that the door is fairly tight to close, makes slamming doors impossible.

However when your mum doesn’t get the one thing she really wants, it gets really hard. Mum is as bad as me when it comes to chocolate.  She may have grew up during the war with food rations, but this hasn’t stopped her from developing a love of chocolate.  She’s had it for as long as I can remember. I used to sneak into her bedroom and find the big bar of dairy milk hidden in the drawers of her dressing table. I would have to break off a complete row to ensure it sort of looked the same the next time she took a chunk.

With her sugar levels spiking above the maximum of the monitoring equipment, any food item high in sugar has been on the naughty list. It didn’t stop mum getting access to it though.  Before we moved in, we would get her shopping and this allowed us to buy sugar free items. Diabetic marmalade and sugar free Fanta for example and yet her sugar levels remained high. In hindsight I believe it was a combination of a generally poor diet (cooking or rather not cooking for herself) and poor self medication (forgetting to take tablets or dropping them due to poor eyesight). Also during this time, we know mum managed to obtain chocolate.  Biscuits, cakes and bars of dairy milk and mars bars.  Add that together and no wonder her blood glucose level was above 280 mg/dlmilligrams.

Now that we have moved in, mums access to chocolate has been severely restricted.  The good news is that her sugar levels are in single digits which is where I’m told they should be.  We have even reduced her insulin levels down from 24 units when she was initially in the RUH to a current 10 units level.  However she now wants chocolate. In her eyes, her sugar levels are where they need to be so why can’t she and to be fair, who am I to deny her one of life’s pleasures?Fry's Chocolate Cream

So after a discussion about, sugar levels and the fact that I have to inject her every day and we don’t want her going back to hospital etc etc, I bought her a bar of Fry’s Chocolate Cream thinking should would have a couple of pieces and eat it as a treat over time.

But no, whole bar consumed in a oner. “But I haven’t had it for such a long time so I couldn’t control my self.”

Now if this was your child, you could send them to their room, remove access to some treasured device. When its your mum what can you do? Well I thought I would be clever and wait for a bit and take her sugar level readings to prove my point. 6.4, bugger mum wins again. Looks like the occasional chocolate treat is ok.  Saves tantrums in the future I guess!

Fed Up

You might think from the title, that this is about me but it’s not. It’s interesting that even with all the best intentions you may have, making someone happy is not easy. Since Dad died a couple of years ago, I think it’s a fairly obvious statement to say we have all missed him. The way we deal with grief and remember someone is a very personal thing and it can not simply be fixed with a positive attitude.

Sonia and I have been talking about moving in for over 12 months. The idea was born from a desire to improve mums standard of living. To me having a house and money is not the be all and end all of life.  Having people around you that you care about and that care about you is far more important.  Personally good friends are just as important to have, if not more important than good family (ignoring your immediate family). I would suggest you spend more quality time with good friends through you life time than you do with your wider family and therefore ensure you have some good ones. I know I do.

Anyway back to mum, her zest for life seems to have dwindled these last few years. An element of depression, or not being bothered because she’s alone, who knows. The problem though is a lack of focus on herself. Diet became poor, self medication not administered and its then a slippery slope with physical problems then snowballing.

Poor diet has no doubt led to an acceleration in her diabetes causing other problems such as her eyesight. In conjunction with glaucoma this means she has limited vision. Limited vision then effects your confidence to move around, to be self sufficient, to be able to cook properly. Short term memory can be affected by lots of things but again, has an immediate affect on your well-being. All these elements add up and make coping alone difficult if not impossible in my view and the main driver for our decision to move in.

So whats the point of this post about being fed up. Well as I said at the start, I find it interesting that even though Mum continues to say she likes us being around and living with her, she is still fed up. We have improved her diet, we have diabetes under control, she is not falling over and hurting her self and she has lots more interaction with people now and yet when you talk to her she is still fed up.

I suspect she is fed up due to a multitude of things. It must be incredibly frustrating, to have spent an incredibly full life, surviving WWII (Messerschmidt shot at her), raising 4 kids and supporting them through Uni, working full time in the Tax Office, retiring and then gaining her own BA degree to end up sitting on the sofa from 08:00 till 20:30 7 days a week with the only thing to look forward to us me, Sonia and Ella coming home from work and school.

So moving in fixed the easy stuff with the diet and medication. The harder part will be to help fix or at least try to improve the rest.