22-10-13 - Thursday I - Developments

So, Mum's recently moved into a care home. She wasn't really enjoying life at home with a live-in carer, but we kept her at home for as long as we could. Eventually she refused to have the carers in her house, and so I had to go and stay with her for a few days over a weekend. 

It made sense really. Although I didn't really want to do it, I had looked after her for five months before the carers came, and it made sense to do the last few days before (hopefully) she moved into a care home. We had already lined up a "taster day" at my preferred home - I had looked at three or four already - so I had high hopes that Mum would like it. As it happens, she did, and I asked if she would like to go in for a longer term, like overnight? Yes please, was the response. Caroline arranged for Mum to go in permanently on Monday, and the last time I saw Mum was the Sunday before, nearly two and a half weeks ago now. 

It feels really weird. I am used to popping over at any time to see her, getting calls from the carers asking for help, etc. Now she needs time by herself to establish a routine, to get settled and used to her surroundings without our assistance. I get regular updates, she seems to be doing okay. But I can't *see* her. I did catch sight of her on the stairs when I was dropping some extra clothes round, but I don't think she saw me. The home are good at putting up pictures of what's going on on "social media" so I do get to see what she's been doing, but we've outsourced her care, even moreso than we did when we got a live-in carer, and it feels very, very odd. 

I am going to see her on Monday, so that will be something. I am not expecting to stay for long; once we've said hello to each other and I have asked how she is doing, I expect conversation will dry up. I will be able to update her on family goings-on, and blather on for a few minutes, but I won't want to stay for too long. It'll be interesting to see how she is. I think that currently Mum's mood depends on what she has been doing for the previous five minutes, so if the morning activities have been enjoyable and lunch tasty, I think she'll be in a good mood. If the morning activities are boring and lunch uninspiring, she might ask me to take her home. I don't know which way it's going to go. I guess we'll see when we get there... 

TTFN. 

22-01-05 - Wednesday I - A Glimmer

So today we had a call, one of the agencies we've been working with has a candidate to care for Mum. They say she's good, they've worked with her before, and they think she'd be a good fit for Mum. 

Sounds promising, and she can start soon as well. That might mean - well, it does mean - that respite care in a residential home is off the table, at least for the foreseeable. The carer can stay for 12 weeks, apparently, which is a good chunk of time and will hopefully allow Mum to get used to her. We'll see how that goes, as she will hopefully start in ten days or so...

TTFN.

22-01-04 - Tuesday I - Respite Care is Off

Today we received the unwelcome news that more people in the care home we wanted Mum to go to have tested positive for covid, and so Mum won't be going there any time soon. I'm a bit worried about what might happen at the weekend, but we have a couple of friends who may be able to help, so all is not lost.

 

It may be worth looking at other homes, and as TW pointed out, they are likely to be smaller, more independent operations and it may be quicker to get Mum placed. Especially if they are set up to offer respite. We'll have to see how that goes. Just when I thought we were beginning to see the wood for the trees...

TTFN. 

2022-01-03 - Monday I - Back to Mum's

So, that's the festive season over and the New Year well and truly seen in. Now the humdrum returns, and it's back to Mum's to make sure that she's okay. She was quite teary when I arrived; I think she's beginning to feel loss but doesn't quite know why. 

I brought her to my house for a while, to see TW and the girls, and to have a cuppa. Then we went to the big Tesco to shop, that takes an extra bit of time. And then home with some bulging bags. She spoke to a friend on the phone and then another called later, and that seemed to lift her spirits. 

We did have an argument about her elevating her foot (it's still swollen from the bunion operation), but that had seemed fade into inconsequence later in the evening.

Then it was Coronation Street and time for bed, and day one back at the ranch was done...

TTFN.

21-12-08 - Wednesday I - Dementia Diaries VIII - Grivvy

Today's Word of the Day (WotD) is "grivvy". I've got no idea either. We were out for a walk for the first time in Mum's post-op shoes, walking quite slowly, and she said "this is grivvy". We didn't walk very far, but I don't think it had negative connotations. It was nice to get out in the fresh air.

TTFN.

21-11-25 - Thursday I - Dementia Diaries VII - Repetitive Treasure Hunts

It's getting to the point now where Mum keeps forgetting where she has put stuff. I think she used to do this, but now she is doing it more regularly. Yesterday she realised that she had mislaid her wallet, so we turned the house upside down trying to find it. We looked in all the usual places with no luck, and I started again. When looking in one particular spot which I had already visited once, I noticed that there was what looked like a pad of tissues. When I looked more closely, it turned out that it was her wallet, but wrapped up in tissue paper. So I gave it to her, and she was very grateful.

Then, less than an hour later, she again claimed that she had mislaid her wallet again. Having briefly looked around me, I headed back to where I found it the first time and guess what? There it was, in precisely the same spot as when I'd found it fifty minutes earlier. 

I know that it is the dementia, but it is becoming harder and harder to continue to be patient and I should accelerate our search for a long-term solution...

TTFN. 

21-10-19 - Tuesday I - Dementia Diaries VI - Capabillity

When I first went to stay with Mum there were a few things that she couldn't do, like use the key in the front door, and put up the washing line in the garden. I did assume that she had lost the ability to do those things, but it seems that she has regained the ability to do those things.

Someone did suggest that maybe what with Dad being ill in hospital she was anxious and that was affecting her ability to perform what seemed to me to be straightforward, repeatable and well-known, almost daily tasks. I was profoundly surprised then, when she seemed to regain the ability to perform some of those tasks. I had assumed that Mum's deterioration would be linear and one-way, but it seems that that is not the case. 

I do think that her reasoning and speech has deteriorated since I've started looking after her. I don't think that I am the cause of that deterioriation, though! She has started calling me "Jim", which was my Dad's name, and she always asks when I'm coming back if I head off somewhere while someone else is is with her. So I think I am her safe space. Any way, when I first started looking after her I was trying to arrange a live-in carer for her and I told someone that she had dementia. Later, she said "what was that word you used?", and she said that she wasn't happy with me using that word. I'm not sure she could have that conversation now, even only two or three months later.

Luckily, though, I am quite "laissez-faire" (some might say "lazy") by nature, so I don't think I'm taking away responsibility from Mum. I will normally only intervene if she's getting confused with whatever she's doing. Maybe I could step in earlier, but I think if it's something that she could normally do, I should leave it to her for as long as possible. And there are times when she can do things, and there are times when she can't. So it's worth letting her get on with things so that she doesn't feel infantilised. At least, that's what I tell myself... 

TTFN. 

21-10-13 - Wednesday I - Dementia Diaries V - baking saffron bread

So, Mum used to like cooking and baking. And fortunately it's one of the things she still likes to do. She has decided that knitting and playing bridge are things that she "used to do", she doesn't do them any more. That's a bit of a shame, because they would be a good use of time.

Anyway, baking is still one thing that Mum likes to do. Unfortunately, when we do cook together we normally come very close to arguing because Mum gets bored following the instructions, and if anything I am a stickler for the instructions - I rely on them, because I've never felt comfortable "freewheeling" in a kitchen. 

Last Monday she decided that she wanted to make saffron bread, following a Paul Hollywood recipe. The trouble became evident when she decided not to let the dough rise (that's when you leave it for two hours so that it rises as the yeast gets to work), nor did she want to let it prove, which was another two hours.

So basically she made a dough mixture and put it in the oven. I had no idea how long it should take to cook, nor do I know how to identify when it's cooked; all the instructions I read advised to let the dough rise.  

I did explain that she should follow the instructions and if she chose not to follow the instructions that might not be the best option, but her attention span just isn't there. She has no patience or understanding of time. I've probably mentioned before, but if it isn't happening "now", in front of her eyes, it's not important (the one exception, I think, was that my uncle seemed to be terminally ill in Ireland, and she was aware of that).

I wasn't looking forward to sampling this unleavened saffron cake, and my suspicions were confirmed. It was cooked on the outside but still raw dough on the inside, and it weighed a ton. She did suggest giving it to one of our neighbours, but I told her she couldn't do that as it wasn't cooked. Eventually she threw it in the bin. 

Lesson learned, I suppose; stick to simple recipes like hummimgbird cake and victoria sponges; recipes / cakes where you can throw everything in the bowl and marvel at how it all comes together in the oven. Certainly don't entertain any recipes where any degree of patience is required. 

TTFN.

21-09-28 Tuesday I - Dementia Diaries IV

 So, last week we had fun. Mum was very concerned about some theatre tickets which were for a date in 2020, which had obviously passed. The date had been rearranged for 2021, but that date had also passed as well. She kept bringing up these tickets, and so eventually I phoned the box office and clarified that the event had been postponed *again* until July 2022. I did hope that would be the end of it, but no...

Later, she advised that she didn't actually want to go, which was actually a sensible decision in light of Dad's passing, and so I rang for a refund. Absolutely no problem, the nice lady at the box office said, I can refund the purchase to the card you used to pay. This was the Monday, I think. So I told Mum, there was no need for concern, the refund had been made, and it would be on the card. I did think that would be the end of it, but no...

Mum brought up the issue of the tickets again a couple of times, and it took me a while to figure out that as far as she was concerned, the matter wasn't closed because she didn't have the cash in her hand. I explained that the refund had been made to the card, and that she basically had free money on the credit card, in the expectation that the explanation would be sufficient. Unfortunately, it wasn't. 

To cut an even longer story slightly shorter, I ended up, on Tuesday afternoon, walking up to the shops to take £71.50 out of the cash machine so that I could give Mum the hard cash she was expecting. 

The irony was that she hadn't paid for the tickets in the first place; she may have used the credit card to buy them, but Dad had then paid the monthly bill, and so she had never been out of pocket. But she was dreadfully concerned about the refunded cash, and I've not heard it mentioned again at all in the week since I gave her the £71.50. So it seems that was an end to it. Mum doesn't use cards now, she only deals in cash, so if I had thought about it for even a fraction of a second I would have seen that giving her the cash was the best and only solution. Every day is a school day, isn't that what they say? And next time I'll know what the answer is before I'm harrassed about it ten times a day and nearly driven to a breakdown...

TTFN.

21-09-20 - Monday I - Dementia Diaries III

Well, that was an interesting day. I think Mum went on strike, although I'm not quite certain. She was mithering about who was going to wash the sheets, so I took them down and put them in the washing machine, and when the cycle finished I was on the phone. She was bustling about, huffing about gettting the sheets hung out to dry. Well, I wasn't going to hang up on a fairly important call to hang sheets out, but once I had finished I went out to the garden. Mum was then nowhere to be seen...? 

I don't begrudge hanging the washing out; I find it weird though that she would think that takes priority over an ongoing phonecall but she's not prepared to actually hang out the sheets herself. The intricacies of the mind are a wonderful thing, but Mum was hardly predictable before her dementia diagnosis... And then she paid for tea and cake out later this afternoon, so I thought that I was back in her good books. As I say, an interesting day...

TTFN. 

21-09-17 - Friday I - Dementia Diaries II

Wednesday was a good day. We went to Arundel in the afternoon and had a walk around the town. It's more of a village, but with a castle attached, so you can't really call it a village...

Some days Mum can't walk far because she has some toe issues, so Arundel is just about the right size. We walked up to where Sparks Yard used to be, and looked around Nineveh House. Mum is so odd; despite the fact that she could almost buy anything she wanted, she is still a spendthrift. It is just bred in to her, it's part of her inner core. The day Mum starts splurging money on even good quality tat will be the day I know that she's truly not there any more. So of course, she turned her nose up at everything, but there isn't really anything she needs... except fudge.

We wandered down to Roly's Fudge Pantry and bought three packets for £10. My choice was the salted fudge, which was delicious. Mum seemed to want to eat it all before dinner, but I saved most of my pieces for pudding. 

We also stopped and had a cup of tea in Lulamae's cafe, which Mum seemed to enjoy. Going back to her spendthrift ways, she would never normally enjoy a cup of tea out when she can make a perfectly good cup at home... But it was a nice sunny afternoon and spending time wandering around Arundel seemed an appropriate thing to do. All told, I was happy with Wednesday. 

Yesterday (Thursday) was a different story; it was a tiring day. I was trying to understand from Mum what she wanted from Dad's funeral, which was a complicated conversation to have, involving choice. And there was a point where she was trying to tell me that I should somehow change my attitude, but I couldn't quite get what she was driving at. So the levels of concentration were high, and I am not sure that all our interactions were successful. But: when I said I was going to go out for a walk to get some fresh air, late in the afternoon, she offered to come with me, so I knew I hadn't pissed her off. To be honest, I was really looking forward to 40 minutes or so by myself, but I didn't manage to achieve that yesterday. 

TTFN. 

21-09-15 - Wednesday I - Dementia Diaries I

I shouted at Mum yesterday.

I'm not proud of the fact. I'm actually really upset that I did it. But I'd just spoken to the Funeral Director about Dad's funeral, and I was looking for a document to show Dad's last job title before he retired. And Mum started banging on about some Nashville tickets, while I was feeling under pressure to find that letter. 

I know that time is collapsing for Mum, so if something needs doing, it needs doing *now*. So it is the dementia, not Mum, which is causing all of this. And I shouted at her, telling her that finding Dad's letter was the more important issue. I didn't swear, but I was conscious that I was shouting. And I knew at the time that it really wouldn't help anything, but I was feeling really pressured. 

Yesterday was tough; I had to discuss the plans for Dad's funeral with the Funeral Director as well as register his death. And watching Mum slowly disappear isn't particularly easy either...

Watching Mum "forget" how to make a cup of tea, and "forget" people's names, and "forget" events is sad & painful. She is essentially still there, but she can't express herself properly, and she can't follow an argument. She needed help with paying a cheque into the bank on Monday. That would be something she could do without thinking about it even as recently as last year. 

But it's not as though she has forgotten and can be reminded; it's like that piece of info has been permanently destroyed. An example is that she has forgotten the name of the woman who lives over the road, and as often as I tell her the lady's name is "Helen", she can't take that in. Even if she refers to Helen two minutes later, she won't be able to use Helen's name - because that info isn't in her head. Reminding her of the name doesn't help Mum, but it does help me keep a track of what Mum is thinking about and referring to. 

Anyway, I raise my voice very rarely, and the fact that I did so yesterday, to my dementia-ridden Mum, was a bit of a wake-up call. I need to remember to take a breath next time, wait a beat, and then respond. That Calm subscription might come in handy after all... 

TTFN.