Mum's Dementia Diary - Part 2

Care home day minus 95

Big mistake last night. Had to go and pick something up and she always wants to come with me if I go anywhere. Sometimes it’s much easier and quicker for me to go on my own, and I need to be doing that often as it’s important for me to be able to just come and go as I need to sometimes, and also for her so I don’t set an expectation that she’ll come with me to everything. Last night it took longer than expected and we didn’t get back til 8PM. Bearing in mind she’s usually starting to go to bed the first time each night at 6PM so by the time we got back and she’d settled down ready to go to bed it was nearer to 9PM. The next hour was back and forth literally every few minutes. Downstairs because she couldn’t get to sleep, then wanted a drink, then to check the doors were locked, then to check I’d be here in the morning, then to say she couldn’t get to sleep again and more. Eventually she went off and as a result of being so tired I assume she didn’t get up in the night. First shout was at 7AM where I could hear her shouting to me asking if she was allowed out of bed. Really don’t want her being reliant on me in knowing whether to get up or not so I always get her to check the clock and if it says 7 or 8 then no reason why she can’t get up. Any earlier than that and she’s over-tired and more confused during the day. So she got up but told me she didn’t know what she was doing. Had to explain that it was time to get dressed and have breakfast and every step of the way I needed to tell her what to do and how to do it. If I told her she knew what she was doing and could just get on with it she’d just look at me confused and say she didn’t know what she was doing.

Ants – imagine never having seen an ant before and opening the door to see thousands of them running around your front step. That scared the living daylights out of her today and she physically couldn’t get onto the step and out the door. I literally had to get a brush and sweep them off the step but she was still petrified of them coming back onto the step to bite or attack her so had to get her to hold on tight to me and go as quickly as we could onto the step and out.

Toilet habits – very vocal in there. Some very hearty self-congratulating when succeeds in the problematic number 2’s. Not much filtering any more. Used pads left in the toilet or bathroom and I have to help her find and buy more. Needs to be done so no point in being embarrassed by it. I draw the line at her bringing bloody toilet tissue in to show me because her bum’s sore from the 30th toilet visit today. Just tell me mum please….live examples not needed thank you kindly.

Just said hi to herself in the mirror and had a good laugh with her reflection…..and closed with a see you later. Definitely a bromance brewing.

Care home day minus 94

Horrible evening yesterday. Went to bed at 6, fighting to stay awake as still tired from late night the night before. Was still coming downstairs at 10.30PM. Very confused, frightened and tired. Counted around 20 up and downs in that time. Eventually I had to go to bed earlier than normal just so that she didn’t have to venture downstairs to confirm I was still in the house. That’s what it was mostly….wanting to know I was here. Once I’d gone to bed she didn’t get up any more and slept through the night. I heard her move around 7.15AM and instead of knocking on my door to see if it was ok to get up she got dressed, went downstairs and started making her quaker oats. I’ve been saying for weeks now, every time she woke me up at various times of the night, that she has her clock in her room so that she can see what time it is, and if it say’s 7 or 8AM then it’s ok to get up. This is the first morning she’s done that consciously and that feels like a massive step. No guarantee that she’ll do it again another day but shows there is still some cognitive memory and recognition of things. Huge in that respect but also very likely to forget that again tomorrow morning I know.

I have to be away at work tomorrow. Will leave home around 5.30AM to get to work for 8. Mum will hear me when I get up and that will unsettle her, as the rest of today will be too as I’ve just told her I’ll be away tomorrow. I’ll have one night at home with my family and then leave there at 5.30AM the following morning so I can be back here to start work at normal time. 120 mile journey so lots of opportunities for delay but fingers crossed. The impact on my family is huge in all of this and I’m very conscious of what they’re having to pick up in order to allow me to make sure mum’s ok. They want me to do this too as it gives them reassurance that her last however many months or years are as good as they can be, but it comes at a cost.

When I told mum that I would be away early the next morning, but only for one full day as will be back up not long after she gets up next morning, she was a bit tearful straight away and asked what she’d do about shopping and going out. Also getting very panicky and having coughing fits, out of breath etc. She gets I have to be away one minute, thinks it’s completely unfair the next so I know already that tonight’s going to be a bit crap in that she’ll be up dozens of times before getting to sleep, and she’ll be up in the night too. She’ll wake again when I get up and she’ll be tearful when I go. I have to plan more time to get sorted because I know it will be fraught. One thing she’s done a few times as I’ve closed the door and locked it is bang on the glass of the front door from the inside repeatedly until I have to go back in to see what’s the matter. Generally it’s because she’s scared that she’s locked in and can’t get out so I have to remind her where her keys are and that she can open and close it as she needs and wants to. She’ll stand at the window and wave and I know she’ll be in bits as I drive away. Have to be hard to that as I couldn’t’ drive away if I wasn’t for that split second.

Care home day minus 93

Last night was tough as expected. Between 6 and 9PM mum wasn’t in bed for more than 5 mins. Moved from tears to anger to life being unfair and no-one cares about her. Then full of apologies and not meaning me when she says that. I told her I was going to bed at 7.30PM, thinking me being in bed would settle her down but no, she kept coming to my room to check I was there, and asking if I was ever coming back after going in the morning. Told her the same thing every time that I was only away for one day, and back the day after for paper and coffee but she forgot in an instant every time.

Woke me at 2.30AM saying she didn’t know where she was. Told her it was nighttime and still bedtime and she went back to bed. My alarm went off at 5AM and as I got up to go to the bathroom she was wide awake and asked if I was ok. Told her that I was getting ready to go to work and back tomorrow and that upset her again. Means I’m on my own and can’t go out or see anyone she said, but literally one minute later she said she knew I had to go away and she’d be ok. She then asked me if it was ok for her new friend to come round. I asked which new friend and she said the lady in there, and pointed to the bathroom. She said she’s going through a difficult time and they both thought it would be good if they spent more time together. This is her reflection in the mirror that looks as if it’s manifesting fully into her new friend. Another toddler comparison and while I may see it as her imaginary friend she’s very clearly real to her. We did have something similar some time ago when mum would be wide awake and talking to someone in the room. When I asked if she was ok she would turn to the invisible person she was talking to and say they don’t understand me or she won’t let me go. Felt like a living dream but so odd to see. I’ve seen plenty of sleepwalking and talking with my sons but that was generally complete gobbledegook and clearly in a dream type state. Very different to what mum was doing. So mum has a friend with her while I’m away today and tonight. It seemed to give her comfort so I saw no point in challenging or telling her she wasn’t real. The way she talks to her in the mirror, even whispering to her late night while calling me a pig, it’s very clear that she’s completely real to mum. Left for work at 5.30 and I’ll ring later today to remind her I’m back first thing tomorrow morning. Also gives me a chance to check that she’s eaten, had meds etc.

Also had 3 choking episodes last night. Woke up the first time struggling to take a breath and then the brain kicked back to the cookie and she was literally gasping for air. I have to try and stay calm and get her to make her breaths shallower. The noise is horrible. The kind that lives in your head for hours afterwards and takes me right back to the Heimlich day. After around a minute she does start to take shallower breaths. She wants to talk and tell me something but I have to get her to wait until her breathing’s back to normal otherwise it just makes her out of breath all over again and back to gasping for air. That happened 2 more times in the next hour. Caused first by a hard cough that woke her up and then straight back in to not being able to breathe at all, as though that full blockage was there again. I do worry when I’m away on days like today but I calm myself in the knowledge it’s the brain doing it, not food getting stuck and even if there’s a short blackout she will be ok.

Care home day minus 92

Got back to mum’s around 7.30 and just as she was stirring. Dressed and quick breakfast and then paper and coffee, and back in good time for first meeting of the day.

Imaginary friendship took a bit of a turn this morning. She now shuts the door when she goes in the bathroom and talks to her reflection, aka her friend. She called me from the bathroom and I told her I was on a call but she had her handbag over her shoulder and keys in her hand. ‘Just going to my friends house’ said Mum. At which point I told the person I was on the call with to give me a minute. Asked mum what she meant when she said going to her friends house and she pointed to the bathroom. At this point I had a choice, just like I had yesterday. Challenge or go with it. I can’t let her walk out of the house on her own. She may not get far but what if she does that when I’m not here? No way I can risk that so I challenged in terms of where does she live? Don’t know was the answer. What’s her name? ‘Don’t know’. How are you getting to her house? ‘She’s walking with me’. At this point I felt compelled to tell her that she wasn’t real but that would have been crushing for her. I said it was ok for her friend to be here but I didn’t think it was safe for mum to be walking to hers.

Later that afternoon I found mum’s pasta/tomato lunch in the bin. She cooked it for too long from the look of it and then couldn’t eat it. Didn’t have anything else instead so gone all day since her quaker oats without anything. Did some fish fingers and chips for tea and she cut them up and brought the plate into the living room to eat while watching tv. Forgot her knife and fork so went back into the kitchen. Came back without her plate of food or her knife and fork. Went into the kitchen with her and pointed to where her food was. She’d washed her knife and fork up already and put them away so that’s why she couldn’t find them. Now complaining that the food’s cold. Tempted to say if you hadn’t faffed around for so long it wouldn’t be but didn’t of course. When she finished she was very complimentary about her microwave/air fryer fish and chips. Least she’s eaten one reasonable meal today. Found her yoghurts in the freezer today. She had no idea who’d put them there. Possible she’ll be blaming her imaginary friend soon.

Care home day minus 91

A tiring day today. Mum went to bed at 6pm, same as most nights, and was clearly very tired. Assume she hadn’t slept much last night on her own but was fighting the need to sleep. Constantly up and downstairs, often in tears and always to check the things she’d already checked (keys out of front and back doors, what time it was, if she’d turned any lights off, unplugged everything etc. Also checking regularly that I’d still be there in the morning. As I was so tired too I decided to go to bed around 8pm thinking and hoping that would help her settle too. Fat chance. I went to sleep quite quickly but mum didn’t, and kept coming in to my room to say she didn’t know where she was. Think I’ve said before that I think that’s her way of checking I’m still in the house but instead of just looking she turned the bloody light on – it was like I’d just woken up next to the beacon from a lighthouse – bugger did it make me jump. One of the few times I’ve shouted and asked what on earth she was doing (insert a few expletives). She turned the light off and scurried back to her room in tears. I felt like crap for shouting at her but almost immediately went back to sleep.

Care home day minus 90

The whole night was hard. Mum up what felt like a dozen times going to the toilet. Each time checking I was there and asking if it was time to get up yet. Light on again a couple of those times, I think so she could be absolutely sure I was there.

Things changed today with her friend in the mirror. No longer a friend and when I ask why mum said she’s saying and doing horrible things to her but wouldn’t tell me what. I didn’t push it but every time she went past the mirror in the bathroom she’d recoil in fear so I took the mirror down. The same with the one in the hallway. She’d say each time she passed it ‘she’s there’, and point to the mirror. Her reflection by the way but the woman she sees in the mirror isn’t her. I’ve read a lot about people with dementia not recognising pictures of themselves or reflections of themselves, mainly as their brains think they’re living in a different time and don’t’ associate the old woman in the mirror with the much younger woman they believe they are. Took the hallway mirror down too. No idea if it’s the right thing to remove them but seemed to calm the immediate situation and I’ll see how things go in the next couple of days. I told mum she’d gone.

Tried to get mum calm before bedtime but nor working as scared the woman is coming back. Also now scared of going to bed on her own so could be a long night again.

1030PM and still up. Nothing working tonight in terms of calming her down or reassuring her that all is ok, and hoping that eventually exhaustion will kick in. That’s stressing me too and my reactions to her are probably feeding her anxiety. In the end I changed tack completely, almost invoked another person who could talk to her really calmly and objectively and she was asleep within 20 minutes. Why the hell didn’t I just take a deep breath 2 hours ago.

On holiday in a weeks time, a week in Cyprus with my partner so really looking forward to that and ?trying to get everything ready. Definitely harder by not being in my own home with a suitcase on a bed in the spare room to pack over a few weeks. My main issue is mum. It’s a long time to leave her on her own so looking at different possibilities. Plenty of phone calls to make to see if I can fill bits of each day and possibly night times too. No social services option as it’s all or nothing and would take weeks if not months to switch anything on again. More on the plans and prep next time.