Mum's Dementia Diary

Mum was diagnosed with Alzheimer’s 2 and a half years ago. I’ve been staying with her as often as possible over the last year and a bit, and I decided to start this diary as most day’s I see something new or different with her. Some are just variations of things that I know are already a result of her Alzheimer’s. Others are new. Sometimes confusing and scary for us both, and often a very stark indication of the progressive path she’s on with her dementia.

By staying with her I hope I’m extending the time she can live in her own home, and as independently as possible. I know there will come a stage in the not too distant future where she’ll need more specialised care.

That day has now come and while I’d hoped this diary would be a long term one, it’s now effectively become a 100 day diary. 100 days from the day I had to move her into a care home.

Why LinkedIn I hear you ask? This isn’t Facebook goddammit. Correct, it’s not, but I work full time in a challenging role and industry. I have to adapt but I also have to deliver, it’s that simple, and so yes, it is relevant for LinkedIn and like everything in life, if it’s not for you then politely jog on.

I won’t list absolutely everything and I’ll try not to repeat things too often. My hope and aim is that it helps other’s caring in whatever way for anyone living with dementia to understand they’re not alone, not going mad, and that it’s ok and normal to be scared, frustrated, angry…..to feel out of your depth, to wish you were somewhere else and to also share that it’s incredibly hard knowing you want your mum, dad, sister, grandad, friend etc back but also know that’s impossible.

One of my main ways of coping is knowing I have 2 mum’s. My proper mum is still there. Don’t see it all day every day. Don’t even see it every day. But she’s there. The laugh, the smile, the mischief…it’s all still there and is why I’m here. There’s also my dementia mum. She’s often angry, confused, upset, does some very odd things and can’t remember around 99% of things at any given time but my dementia mum isn’t my real mum, and I can therefore cope and ignore what sometimes comes out of her mouth or for her various forms of very un-mum like behaviour.

I try to approach it all with good humour and a positive outlook. That mask slips often and I find it hard to live with the frustration i feel, and try doubly hard not to let any of that show to mum. She has no control whatsoever over what she does or doesn’t do and is probably a million times more frustrated with it than I am, and more than I’ll ever know.

Care home day minus 100

Woke me up at 5am and 6am to ask if it was time to get up yet. Said ‘no mum, still bedtime’, and reminded her both times that she had a big fat clock in her bedroom so she could see what the time was, and not to get up if she could until it says 7 or 8AM.

Got up in good time to take her for her paper from Waitrose so she can get her ‘free’ coffee. Most of the staff in there know mum, know she has dementia, and are beautiful in how they help her by asking if she wants her coffee today, and reminding her she has a latte if she forgets. They tell her how and where to scan her Waitrose card and they tell her how and where to put her contactless bank card. They also help her when she has to enter her Pin on occasions but more on that when she has to do it. I’ll mention Linda at some stage too, the best and most helpful woman in the world behind the cigarette/lottery counter. Mum’s face lights up when she sees her as she’s been looking out for her for a long time.

Mum talks to herself quite a lot. Mostly it’s vocalising with the sort of conversation we’d have in our head i.e. ‘just wash my coffee cup up’, ‘put the porridge in the cup then it goes in the microwave’, that sort of thing. Today there was something new and different, and to be perfectly honest the reason I thought it would help to write a diary from now on. She went to the toilet. Lots of talking while in there. Some very detailed about the size and shape of what’s being exited. Often tears about how painful it is as she goes to the toilet probably 30 times a day, mostly because she’s forgotten she’s been and feels she needs to go again, just in case. Because she goes so often her bum is ultra sore. We’ve bought cream (Anusol mostly…not a plug btw…that really doesn’t sound right I know…not an advertising plug I mean) but she generally takes it out of the toilet after she’s used it and puts it down somewhere, then forgets where she’s put it and has none to use. So we go buy some more. Then I find her stash. Never in the same place. Last time it was under a pillow. 6 tubes of it. She also forgets how to use it and I find cream all over the toilet seat, the floor, the wall and in the bathroom when she washes her hands. She also has wet toilet wipes to try and make it a little less uncomfortable than using normal toilet paper. Going that many times a day makes normal paper feel like sandpaper so anything to ease the discomfort can only help.

Anyway, back to the new thing today. I heard her go to the toilet. Heard a few things I’d prefer not to and then she flushed and went to the bathroom next door to wash her hands. For the next 10 minutes she had a full-on conversation with her own reflection in the mirror. Very detailed, a few laughs, very descriptive about things she’d been talking about with people and almost rationalising things that have happened recently or that she thinks are coming up. Odd to see it. A little uncomfortable but also comforting at the same time if that makes sense. I decided it was best to let it go and not interrupt. Didn’t see any value in stopping it and asking who she was talking to. It clearly wasn’t odd to her so just something for me to get my head around and accept as her normal.

Took her out for a Costa coffee and she was insistent she paid. I scanned my app and she went to get her purse out but went to the wrong part of her handbag and took her keys out instead. Then stood there with keys in her hand wondering what the hell she was doing. The girl behind the counter chuckled a little. Probably confused and a little uncomfortable and the chuckle was her way of making light of it and not wanting to make mum feel abnormal or uncomfortable. Took a good few minutes to explain to mum to put her keys away, close that part of her handbag and get her purse out of a different pocket. But she got her purse out, found her bank card first time and paid for our coffees. It’s nice going in there as all the people behind the counter knows that mum has her coffee not too hot, simply because she can’t differentiate when somethings too hot or cold and would scold her mouth if she drinks it straight away. Just one way of lessening the risk for mum but not stopping her doing what’s normal….and they call her Mama which is very sweet.

Mum goes to bed around 6pm each night. Doesn’t actually go to sleep for a good couple of hours. Tonight she was only back downstairs 5 times. That’s a good night.

Care home day minus 99

A relatively peaceful night in that I didn’t hear mum get up at all. I get up at 7 so there’s time for her to have her breakfast (always a do it yourself quaker oats) and her morning tablets, and then it’s out for paper and coffee. When I passed her bedroom she was wide awake and said she’d been calling to see who was up for a while. I usually sleep really lightly as my radar is tuned to any noise that signals she may be up and getting dressed at 3 in the morning, oblivious to the fact it’s the middle of the night. More of that on a later day I’m sure. Possible that my sleep was catching up on me and I was in a really deep sleep. Unusual but not impossible.

Anyway she got up and dressed, all clothes in the right order today, and just before 8 we were ready to go out. Waitrose opens at 8 so I can drive there, she can get her coffee and paper, and I can be back before my first formal meeting of the day. I can’t do that every morning as sometimes I’ll be on an earlier call but I try and do it most days as it’s likely to be the only trip out of the house most days.

Another first today. I always leave her to get herself sorted, get the house keys and unlock the front door. I go to the car and leave her to close up, mainly so that she continues to do as much as she can independently so when I’m not here I have a reasonable sense that she’s safe and ok. Today she closed the front door with the keys still in the door but on the inside of the house. It’s one of those doors that even if it’s unlocked you can’t open from the outside without a key. I have a spare set but if the keys are in the lock on the inside then my keys on the outside won’t work. Luckily she’d taken the back door keys out, which she still does religiously before she leaves the house, and I was able to use my keys to get in there. Not the end of the world today but a big worry about leaving her when I have to be away.

Got her coffee and paper and when we got back I went straight upstairs to work. Heard her shout to say her hands were red hot and on going downstairs there was liquid all over the floor. Turned out she hadn’t closed her coffee cup lid properly, mainly I think as an old friend said hello when she got her coffee and she forgot that step. No biggie. But half her coffee was in her bag along with her now soaking newspaper and her gloves which has actually soaked up a lot of the coffee very well. Washed her gloves in the sink, put her paper outside to dry a little (weighed down with an ornamental hedgehog) and cleaned the floor. She was upset and blaming herself for doing something wrong but still had some coffee, the newspaper dried within half an hour and gloves are now on the line outside drying.

Went to her bank today to register power of attorney on her account so that I can help her do many of the things she needs to do online. She’s a cash only person generally but that means going to the bank to withdraw money, which on it’s own isn’t an easy process for her (but her bank are tremendous in helping her, particularly Jake who told her that she looked after him when he was around 7 years old in a breakfast club I think it was, and he had very fond memories of that time and how mum helped everyone so that was both fantastic and emotional for mum, and me!). She has to take her time with things and standing at a cashpoint with purse and money in her hand isn’t something I really want her to be doing on her own in this day and age, even in the lovely little town where she lives. Online banking means we have a back up if needed, can do some shopping online so she has more choice and if we can’t go out for any reason we can still do what we need to. Power of Attorney itself was a long process but worth doing as early as possible, and applying to register at the bank wasn’t easy but with their help was relatively quickly and easily in the end. Now have to sit and wait for it to come through. No timescale given but we get by day to day so no big worry if it takes a few weeks.

Waiting for a visit from Age UK and hoping that will switch on a visit from someone with them who will come and see mum for an hour when I have to work away. In that hour they might take her for her paper and coffee, for other shopping, may sit for a chat or go for a slow and short walk up the road. It will break the day up for her when I’m away I hope, and stops the walls closing in on her when she’s on her own. It’s not cheap and there’s a minimum commitment but she gets carers allowance (another long and painful process that’s worth starting early) and that will go a long way to paying for it. We did have social services carers last year but they came in for 15 minutes a day to check she was eating and taking her tablets and that was it. Every day was a different person, and every day that person contradicted what the person had told her the day before. She hated it and it was costing ￡260 a month for that daily 15 minute visit. The Age UK alternative is cheaper, visits are longer and they try and keep it to only a couple of people. First few visits will be when I’m here so hoping that she can get used to it, she gets benefit from it first and foremost and also that it doesn’t make it such a worry while I’m away.

Had visit from nice lady from Age UK. Mum horrified that I’m arranging something she doesn’t want behind her back. We have talked about it lots, especially in recent days, but she’s still got the memory of how her carers were last time and as far as she’s concerned that’s what will happen again. This arrangement through the charity is completely different as I’ve already said. They confirmed it would be the same person every time which will make a massive difference, assuming they connect well of course. The other thing they do is strike up conversations about mum’s past, her friends, family etc. If it works out ok then a good chance I’ll look to extend to a couple of days a week but the reason I’m switching it on in the first place, and why now, is that I have to be away with work 3 days a fortnight. Work have been great. As long as I do my job well there’s as much flexibility as I need. My big boss didn’t know until recently that I’ve been working away from home and my local office for the past year, and he hasn’t noticed any dip in work levels or quality so that means I’m juggling as I’d hoped. The fact I have to be away regularly has always been the case since I’ve been caring for mum. My partner and sons are in Telford. Mum’s in Oxfordshire. I need to spend time with them as well as be at work in Telford for those 3 days a fortnight. When I’m away mums on her own. That’s become a bigger issue in recent weeks as her mobility is getting worse almost by the day. She can no longer walk without assistance. She has a walking stick (which needed mountains moving to get her to even consider using it), but she still needs to hold on to someone to calm her fears of falling. Even level paths or floors she sees as rocky or slippery and so has to hold on for what she sees as her own safety. So when I’m not there she’s in the house on her own, all day and all night and she hates it. She knows and accepts I have to go away but every time I go it gets harder as she gets more and more upset. I also know she won’t sleep while I’m away and will not take her meds properly or eat through the day. Someone to go and see her on one of those days I’m away will make a big difference. Taking her out for her paper and coffee for one but company and breaking up the day even more importantly….and someone to let me know if things don’t look ok.

Care home day minus 98

Not a great day at all today. Knowing someone new is coming in soon as a carer has really knocked her for 6. She’s adamant she doesn’t want it and her confusion with words, movement, tablets, food etc is massively heightened today. She’s mixing words up, most sentences are completely incoherent in terms of meaning, she’s losing things that she literally already has in her hands and just generally completely off kilter. It’s likely that I’ll stop mentioning the visits for a while. I’ll be here for the first couple. I’ll go with them and show the carer some of the places she likes to go and the rest they can work out over time. I’ll also be able to see how mum is around the carer, and how the carer is around mum. I’ll then plan my days away wherever possible around the day the carer will come in.

Tonight’s bedtime routine is the worst for a while too. First went up to bed at 6pm. Now on the 12th visit back downstairs. Pair of socks in one hand, a mug in the other and no glasses on her face. Doesn’t know why she’s got the socks or mug and the glasses she took off half an hour ago when she was getting ready for bed. Has 3 bottles of water to drink by her bed along with a glass full of water. Moved the glass to another unit so it didn’t fall off and cause another issue. She had one small drink from one bottle and went to fill it up from the hot tap because she said it was too cold. Explained that the hot water tap isn’t drinkable (still think that’s true, maybe my own minds making that up). She harumphed loudly and rolled her eyes, like a toddler, which is where if I had to describe this stage is how I’d sum it up. But it’s a toddler with an opinion, who can talk and who knows right and wrong but doesn’t always remember it. Many of her mannerisms are very toddler like and there’s almost the innocence (and mischievousness) of a toddler with her at the moment too.

Care home day minus 97

2.00 am, 3.15 am, 4.00 am, 4.50am, 5.45am and 6.30am. That was the overnight’s wake me up’s to ask me what time it was and if it’s time to get up yet. First one I think was after a bad dream as she said she was scared as came into the house and all was dark and she didn’t know where she was. Still in her pj’s and all doors locked so an active dream most likely. She does have a dementia clock in her bedroom in case you’re thinking get her a clock already. It’s exactly the same as the dementia clock in the kitchen but for whatever reason she physically cannot see it in the middle of the night. Still trying different things and different places to put it to help that. My other theory is she’s just checking to make sure I’m in the house and she’s not alone. Told her it was still night time on each wake up and she went back to bed. A lot of talking to herself when she went back and a few grumbles about her shite of a son telling her what to do. 7.30am was the last one and I told her it was ok to get up if she wanted but this was my first chance for a lie in for about 3 months and I’d quite like to take it if that was ok thank you very kindly. She harumphed and said she may as well go back to bed too then. Around 8.00am I decided it was better all round if I got up too, told her that’s what I was doing and she said well no point in her getting up as there was bugger all to do. Thanks.

Being Sunday we generally meet with my brother and walk together into town, about a 10 minute walk normally. In recent weeks it’s been taking about 25 with mum as her walking’s got much less steady and a lot slower in recent weeks. She’s always managed there and back. Only go to get her paper and coffee, what else, but clear from last week that both ways was likely to be a struggle. I took the car, brother walked with her into town and by the time they’d got there I’d parked; Walked 5 mins to Greggs for my coffee and a muffin, walked 5 mins back to my car to drop the muffin off, then walked towards them still walking very slowly with multiple stops for water. Drove home as no way on earth she could have got back.

She used to smoke. Started when she was 15, 20 a day for the last 65 years. In January this year she had a cold and when she inhaled the cigarette it made her feel dizzy. That scared her so she didn’t have another that day. Lit up next day and was dizzy again. That was the last cigarette she’s had. 6 months now passed and she literally just stopped overnight. Tried to do that probably 100 times in the last 65 years and never got past a few days. Now the fear of what happens outweighs the pleasure and although she occasionally say’s I could murder a fag I tell he she can have one if she really wants, but she always say’s no as she remembers that horrible feeling of dizziness after all these months. Made a huge difference to the house especially, even though I asked her to smoke outside when I started staying here last year, simply as I couldn’t live in a smoke-filled house. The smell on my clothes and hair, plus it being in the air constantly and making food taste horrible, and it going on my chest pretty quickly too (which also stopped a number of other people being able to come). The biggest benefit is on her bank account. She has a pension from her time in the RAF and in a civil service type role but never had any savings due to smoking. ￡12.50 a bloody packet!!! Now she’s seeing a surplus each month which means she has money herself for emergencies now, plus anything she needs to buy around the house to help her. She’s definitely eating more to replace the cigarette habit I think but she’d lost so much weight over the last few years from forgetting to eat, that even if she puts some on now it won’t make much difference. We shop fairly healthily in that we’ll buy bananas, yogurts, mousses etc and that balances with the doughnuts she absolutely insists she needs daily (and which she scrapes the sugar off as not healthy).

Tyring some new food today. Kids ready meals. One fish pie and a cottage pie. Small portion and looks like dog food but smells and she say’s tastes ok. She’s been eating exactly the same things every single day for years. Quaker oats for breakfast. Doughnut mid morning. Pasta in tomato sauce and a veg packet for lunch. Don’t think she’d been eating at tea time for quite some time so now always have something like fruit bread in so she can have that before bed. I’ve tried dozens of other types of meals without her liking the taste, texture or look and so hoping these kids meals will be ok. Seem to be from her first taste of 2 of them. Also got some fresh chicken pieces so I can do a mini roast. All done in the microwave or airfryer and I’ve become a dab hand at doing a full roast in 15 mins. Chicken, stuffing, broccoli, mash, mini roasts, yorkshire’s, gravy and mint sauce, all done in ultra quick time and still tastes yum.

Not sure if it’s still a hangover from the worry over the carer coming in but mum’s memory loss has literally been instantaneous today. Most recent example was 6pm and decided it was bedtime like most nights. First trip back downstairs after 5 mins to re-check what time it was. Went back up and said no idea what time it is but think I’ll go to bed. Several other examples where she’s taken a cardigan off and put it down next to her and then asked where her cardigan’s gone. Also lots of talking to her reflection in the bathroom mirror again. Full blown conversations, mostly about what she’d done today or is doing what she thinks is soon.

Care home day minus 96

Just rushed downstairs mid-work call as mum coughing violently. Some of that could well be down to the giving up smoking and the body getting rid of 50 years of shite, but there was an episode a few months ago that is always close to the surface when she coughs. One of my son’s was down to see mum and me (bearing in mind my own immediate family are 120 miles apart while I’m here with mum) and we decided on pizza for tea. Included in that was a cookie dough. Not the sort of thing mum would normally eat (neither the pizza nor the cookie dough) so she had a mini fish and chips. While we were sat eating it from our laps and watching tv together mum suddenly started to gasp and fight for air. That turned very quickly into panic as she couldn’t take a breath at all. I assumed first off that something had got stuck and she would cough it out really quickly. Didn’t happen and she kept gasping for air. Then stumbled to her feet and started moving from the living room to the kitchen, holding onto doors, the wall etc on her way. She stopped in the hallway with eyes pleading with me to do something. I was feeling a huge sense of panic while not wanting to scare her or my son. Patted her back a few times. Hit her back much harder a few times and nothing. Realised quite quickly that it wasn’t budging on it’s own, whatever it was, and so made a feeble attempt at a Heimlich manoeuvre. Mum’s quite small nowadays, literally nothing on her from eating less and less over the years, and I was really worried about causing her damage internally. I realised after 3 Heimlich’s that any internal damage was better than her collapsing in what was likely to be a few seconds more of not getting any air into her lungs. So i tried once more, much harder that time but still nothing, then on the 5th Heimlich attempt a massive piece of cookie dough, and we’re talking probably an inch cubed, shot out of her mouth and landed 6 feet forward. She almost collapsed into me while I was still stood there with my arms under her ribs and I think both my son and I nearly collapsed with relief too. It was horrific. The sound of another person unable to draw breath. The knowledge that it wasn’t fixing itself. The knowledge too that no-one else was going to fix it and if I did nothing I’d never be able to look my son or anyone else close to her or me in the eye, The knowledge too that I could cause her some serious internal damage by what I knew I had to do. From that day on, anytime she had any food slightly stuck and which a gentle cough would sort it out, or when she was asleep and woke up coughing, she automatically went back to that I can’t breathe moment. Like her brain was saying something was stuck and it was straight back to that gasping for air again. This time I did what I could to stay calm and resisted going straight to Heimlich again. I hadn’t seen her eat so I was trying to tell myself nothing was stuck and I just needed to try and help her calm down. Every breath she tried to take got harder and she was breathing really shallowly. I tried to get her to slow the depth of the breaths down and over the course of the next minute they did, and she started to take a breath. In that space of probably one full minute it had gone. My other son was there that day and both of them said after seeing it that it’s impossible to describe how scary it is to witness, and how helpless they felt at the same time. Thankfully it worked, both times and I was as concerned for what they were seeing and feeling as I was for getting mum sorted. Over the next couple of months there were around a dozen more episodes of the same thing. Each time the calming her down and helping her slow down the depth of her breaths worked, and the more calm I became at helping her through them. Still horrible to watch her go through. In time the brain I think worked out that she was still able to breathe if something got or felt stuck, and she went on to cough quite violently but not go through the same not breathing at all type of event. While all that was going on I still had to be away for a day or a few days at a time. I worried about it happening while I was away but then found peace in the fact that nothing was actually stuck after that first time, and the worst that would probably happen is that after a couple of minutes the brain would close down a little due to lack of oxygen and black out. The body would then breathe normally, because it could, and she’d wake up after a little while, wonder why the hell she was laid on the floor and go back to bed. Obviously worried that she might fall and hit her head while blacking out but what’s the alternative? We’re deliberately trying to keep her living independently at home for as long as possible. That’s what she wants and overrides everything else. I have to be as happy as I can that when I’m not here she can survive on her own, barring accidents we can’t foresee. I know she’ll take most of her tablets most of the time, and any she misses won’t kill her. I know she’ll eat reasonably well most days and if that’s 6 doughnuts and 6 choc ices on top of the quaker oats and pasta/tomato/veg lunch then that’s ok too. There isn’t a half-way house alternative. With social services it’s either full-on but not a pleasant experience for mum at all, or it’s nothing and fend for yourself. The Age UK option feels like something that could become workable in time. Won’t cost as much, gives far more benefit and more than anything else means mum can continue to stay in her own home longer, and I get a level of peace of mind knowing someone is seeing her for an hour and she’s getting company and out of the house too.

Need to mention too that Mum is convinced that she’s cured of dementia. When social services agreed that we should stop the 15 minute a day carer visits, they said that she was ok without them as long as I was here as often as possible. She heard that her dementia had gone away rather than carers could go away. I have said on a few occasions that she’s the first and only person in the world that’s been cured, and she gets very animated in telling me I’m wrong and that’s what she was told. Most time, like many things, I don’t challenge or contradict. What’s the benefit of doing that other than for my own peace of mind? An hour later she’ll say it again and will have forgotten I said no you’re not you fool, so 99% of time I don’t challenge, and she feels better because she thinks she’s cured and she’s beaten it.

The talking to her reflection in the mirror is becoming more regular. Possible that she knows I’m in hearing distance as some of what I can hear is ‘going to be on my own again’, and I think she wants to say it to me but doesn’t want to upset me by telling me direct so by telling herself in the mirror she’s saying it but not saying it if that makes sense. A lot of the other conversation is just that…a proper conversation with herself. Heard her say just that they’re going to where I used to live (just booked a holiday with my other half to Cyprus where mum and dad were based with the RAF when I was very young), and that there are bits of it she might remember. Funny how a single conversation with her reflection a few days ago has now turned into a 5-6 times a day conversation.

That already feels like a lot of detail but only actually covers 5 days. I’ll continue the diary and if it’s useful in any way, shape or form to anyone then I’ll continue to publish it at intervals too.

Happy to chat with anyone who’s going through something similar, whether it’s caring for someone living with dementia or anything else. It helps to talk and share, it helps to include others in the care where you can, and one thing I’ve learned from it all is that it’s up to other people to decide if they want to help you. The decision on what to be exposed to is theirs, and me thinking I’m protecting them by shielding them doesn’t help them at all, and in the long run certainly doesn’t help me either.

With Love

Neil