Hello again. :(

[Canadian Joanne]

Yes, the dementia meds can vary a great deal in their efficacy. They helped my mother and I'm glad they seem to be helping your mother.

You know this, because of your past experience with William, but don't let yourself get run down and exhausted.

 

[LadyA]

I don't get on much these days, but thought I'd update this.

Still no sign of the extra care visits. I've just left a(nother) message for the nurse about that. Otherwise, mum is fairly stable as regards the alzheimers, so far anyway. In the heatwave we're experiencing, I haven't bee taking her out for walks. I'm not able for the heat myself, much less pushing the wheelchair, and heaving it up and down kerbs and footpaths! I'm disciplining myself not to go in on the 3 mornings that the Care Assistant is in. The urge to go check is there, but I'm resisting!! I need some time to myself, and to spend some time at home.

It seems though at times as if mum is still seeing her "visitors" in spite of her quetiapine. She doesn't seem at all distressed or frightened, and in fairness, doesn't mention them often. Just now and then, she'll start on about, for example, how "this carton of milk was full last night, and now look, it's almost empty! Someone used it!" Of course, the carton of milk wasn't full the night before. It was opened the day before that! Mum doesn't seem to have much concept of days passing, etc. But all in all, she's doing well. Much better than I expected. She hasn't had a UTI for little while now, which is good. (and I hope I haven't jinxed that!) In fact, when I think about it, I actually think mum has been much better in general since she got her covid vaccination, which is a bit weird.

physically, she's gone much slower and sort of stiffer in her movements, which may be age/frailty or could be the quetiapine. She gets around the house with a frame still, but I don't know how much longer she will be able to do that.

 

[Grannie G]

Good morning @LadyA You are doing as much as you can for your mum and are wise to stay away when she has carers.

I can`t manage this heat either and really would be unable to take responsibility for care away from the home.

Strange about the covid vaccination.

Take care.

 

[LadyA]

Good morning @LadyA You are doing as much as you can for your mum and are wise to stay away when she has carers.

I can`t manage this heat either and really would be unable to take responsibility for care away from the home.

Strange about the covid vaccination.

Take care.

It is strange, Sylvia. Of course, it may be a total coincidence. However, a step grandson (late teens) got covid over a year ago. He didn't have a bad infection, no hospital stay or anything. However, he developed "long covid" and was ill for a year, with chronic fatigue, aches etc. He got vaccinated earlier this Summer, and his symptoms all cleared u! Weird. I guess there's a lot they still don't know, both about the illness itself and about the vaccine, but they will only learn bmore by the passage of time. After my second dose of Astra Zeneca, I experienced a sleepless night and then next day, got an ocular migraine. No headache, but bad visual disturbance. However, it only lasted about 45 minutes, and then cleared. Haven't had any other side effects.

 

[Jaded'n'faded]

I get that 'migraine without the headache' thing too. (Not had one for 6 months, touch wood...)

It is very weird! I've only ever had a couple of 'real' migraines but each came with the visual 'aura' first. Now, I only get the aura. In my case it starts as a blind spot then becomes more of a pointy ring, with flashing colours like you'd get from a prism. When it happens, I run for the painkillers and so far this has worked in seeing off the migraine headache. Like you, the visual disturbance lasts about 45 mins.

 

[Canadian Joanne]

It's a blessing that your mother is not distressed by her visitors . I'm also glad you are resisting going in when the Care Assistant is there. I know how hard that must be but good for you that you are managing to resist. Perhaps schedule some nice events for yourself at those times to help reinforce the resistance?

 

[LadyA]

It's a blessing that your mother is not distressed by her visitors . I'm also glad you are resisting going in when the Care Assistant is there. I know how hard that must be but good for you that you are managing to resist. Perhaps schedule some nice events for yourself at those times to help reinforce the resistance?

I do my very favourite thing - stay at home! I don't even open the front gate. I get far too little time at home, so those two mornings that I don't have to do the morning visit to mum are something I love. Plus, of course, my income is very small, and staying home those mornings means I can save a little petrol!

 

[LadyA]

I get that 'migraine without the headache' thing too. (Not had one for 6 months, touch wood...)

It is very weird! I've only ever had a couple of 'real' migraines but each came with the visual 'aura' first. Now, I only get the aura. In my case it starts as a blind spot then becomes more of a pointy ring, with flashing colours like you'd get from a prism. When it happens, I run for the painkillers and so far this has worked in seeing off the migraine headache. Like you, the visual disturbance lasts about 45 mins.

I had 17 years of really vicious migraines twice or three times a week - pain so bad that at times I was literally banging my head off a wall to distract myself (I assume that's what was going on!) . I used to get an aura, but it took the form of shadows at my peripheral vision, like everything not in front of me was in deep shade, and every now and then, there'd be a little sparkle of silver light would flash from the outer corner of my eye, in to the inside corner.
However, the occular migraine I had after the vaccination was exactly as you described - pointing, incomplete circles of shifting, flashing colours.

 

[LadyA]

Well, Well. Funny how things move along, isn't it?

Since I last posted, things seemed to be going along slowly. All Summer and Autumn, mum was well enough that I was taking her out for walks in the wheelchair regularly. We walked miles, admiring gardens and scenery.

Towards the end of Autumn, we could see a slight deterioration in mum. Her mobility was worse. She was getting more repetitive. But nothing major. Just suddenly more frail-looking. And very tired. But, time moved on.
23rd December, the Care Assistant called me. She couldn't rouse mum at all. By the time the ambulance arrived, mum was awake, bright as a button and giggling with the paramedics. We spent the day in A&E, they ran all sorts of tests - and found nothing.

Christmas passed. There were more episodes of finding mum "asleep " and finding it difficult to wake her. Then, 3 weeks ago, another call from the Carer. Mum had fallen, and was wedged against the kitchen door, and she couldn't get in to her. Ambulance called again.

From the evidence, mum had fallen shortly after I left the previous night. She'd been on the floor all night, lying in an ever increasing pond of urine. A cupboard door, at the other end of the kitchen was wrenched off its hinges - She'd obviously grabbed it on the way down.

She's been in hospital since. They flooded her with antibiotics and fluids, for a suspected kidney infection.

There's a huge change. Yesterday, she didn't know my brother - although she kept telling him "You're the image of my son!", but couldn't understand his explanation, that he IS her son.
Talking to her by phone, she sounds great. Answers questions fairly appropriately. Yet, there's something. It's like an answering machine - or, maybe, like asking Alexa or Siri questions. They answer and they answer correctly, but there's nobody there. She seems somehow lost inside herself, if that makes sense.

Every now and then, it's like someone flipped a switch and turns mum off. Then, after a minute or so, it's like she's switched back on. When she's "off", her head drops, she stops moving, except an almost imperceptible twitching/Jerking.

So, we're filling forms, and looking at nursing homes, because she's certainly not safe at home anymore. She needs 24 hour professional care now

 

[Canadian Joanne]

@LadyA I'm so sorry to hear how your mother has deteriorated. It is such a painful thing to witness.

About the "switching off", is it possible she is having TIAs? My grandfather would do the same thing - just be off somewhere and then come back. I'm not sure what he died of, as I was 16 when he died but apparently it was some sort of dementia.

 

[jaymor]

Sorry to hear your your mum has deuteriated @LadyA and has reached the stage we all dread but know is coming. I hope you find a home that suits your mum and you and you hopefully will both benefit from the help of 24 hour care. Best wishes to you both.

 

[Izzy]

Oh I’m so sorry to read about your mum’s deterioration @LadyA. So terribly sad. Like Joanne I wondered about TIAs as well.

Thinking of you both.

 

[Grannie G]

You`ve tried so hard to keep your mum in her own home @LadyA and it`s obvious your health has suffered as a result.

Please look after yourself.

 

[canary]

Im so sorry to hear about your mum. It must be worrying.
I wondered whether it was a seizure. OH has seizures and they look the way you described then afterwards he falls asleep and cannot be woken for a couple of hours. Seizures are quite common in the more advanced stages of dementia.

Whatever it is, it does sound like she needs more care now. I hope you find somewhere that will be just right for her.

 

[LadyA]

TIAs would make sense. She has had a couple before, around 15 years ago.
They did tell us that although normally high, every now and then, her BP "bottoms out", and that would cause her to fall.
She's had three falls in 2 years that have put her in hospital. And I know she's had a few minor falls, and managed to get herself up. She accidentally let that info slip to me one day!

 

[Sarasa]

Sorry to hear of your mum's decline @LadyA. My mum could sound great on the phone too, but not quite like she was when she was well. It sounded a bit like a non-native, but once fluid speaker of English talking in a language they hadn't used for some time. I could almost here her thinking what the next word was going be.
I hope you find a nursing home that both she and you like.

 

[Shedrech]

sending warm thoughts to you and your mum @LadyA
be as kind to yourself as you are to your mum

 

[nellbelles]

@LadyA I hope you can settle your Mum in a good care home and you can settle without worrying all the time..

 

[LadyA]

Oh dear.
The consultant geriatrician went to see mum this morning.
She told him that she knows everyone thinks she needs care, but her wish is to go home!

My brother and I have a meeting with the geriatrician and mum tomorrow morning.

 

[nae sporran]

Hard times for you and your mum @LadyA. Good luck with finding the right nursing home, and try to find a bit of time to relax away from all the worry.