Sugar in her coffee

[Bikerbeth]

Just for me really to update my situation. I had 2 inside visits with screen between us but Mum found it hard to hear me. We then went back into Tier 4 so relative outside - door open - then screen and then relative. Mum even more confused and less able to hear but at least I get to physically see her.
The 15 min Skype call booked for Christmas Day did not happen either for me or my brother although we did get to speak to Mum at different times of the day. Mum did not mention Christmas, so neither did I and we had a nice 20 minute chat.
I managed to have a ‘happy’ conversation on Boxing Day too so I was pleased.

Mum called me by my name the other day when I spoke to her on the phone. That was about the first time in 6 months. More frequently now she thinks I am her sister even though I will call her Mum. She asks me when ‘our’ (her) Dad will be visiting and when I gently teased her and said ‘you are a Daddy’s girl’ her eyes lit up and with a big smile on her face she said ‘yes I am’. She was also asking when she would see her grandparents.

Again we will never know the added impact of lockdown but the decline is continuing. In the last 6 weeks very little of her conversations make sense. I think the staff are having to try and adjust to understand her needs. From going through her Care Plan and behaviours report with the Manager it seems she is becoming more frustrated and bored. Maybe this is my interpretation as I don’t like to think my Mum is deliberately becoming more aggressive. She is throwing objects at staff ( anything from cushions to a chair) . She is also doing a lot of wall kicking and window banging. She refuses to join in anything even the walks they have offered her round the garden (based on how much she loved walking). She seems to spend the day taking everything out of the wardrobe, sorting it and putting it back. She is also doing ‘nasty’ mimicking of staff.
I have asked the Manager if this is an issue for the staff there. Previously she has said No but this time she said they might have to get the mental health team back in to look at medication/behaviours if it get worse. Incidents are tending to happen every 3 or 4 days now. She also hit another resident who told her to go away.
fortunately no staff or the other resident have been hurt to badly just bruised.

The Manager agreed all residents had deteriorated through the lockdown (whether with dementia or not). The activities coordinator who used to ‘bounce’ around the home with bundles of energy said she was really struggling to engage any of the residents in the dementia area now.
On the other side it seems like the estate agent might have found a tenant for Mum’s house. I await further news from brother.
Residents and ‘most’ staff will be given 1st vaccination on Friday. Our area is nearly as bad as London for ‘getting’ going with them.

 

[annielou]

Sorry to read your visits weren't easy with the screen, being able to hear I imagine is a big problem, talking through glass to mum was for me. I'm quite loud but mum would often forget and talk quiet especially if others around so they couldn't hear. Its such a shame your mum is getting more confused and regularly getting agitated, a medication review may be a good idea. It's so sad to see and think of them deteriorating isn't it ? Hard to know how much is down to covid lockdown and how much would have happened anyway but it can't have helped I'm sure. Rubbish blooming diseases both covid and dementia. ?
Nice to read that you had nice conversations at christmas though and your mum called you by your name. I hope the vaccinations go ok and then hopefully the CH may start letting people in again which will be a big relief ??

 

[imthedaughter]

Your mum sounds like my dad @Bikerbeth he seems to know who I am and will ask about my mum and nan but tells people I'm his sister! Sometimes I think he's lost the word daughter. I am reluctant to blame covid too much for any decline given dad wouldn't join in very often anyway but it's not normal, is it?
Dad also had that incident where he hit someone and can be quite nasty to the staff. He has mixed dementia but I never know which makes what happen or if one is dominant - definitely vascular and some Alzheimer's as well.

Hope vaccinations happen as planned!

 

[Bikerbeth]

I did notice some differences between Aunt who had vascular and Mum with her Alzheimer’s @imthedaughter. Aunt had her diagnosis first which ended up with Mum taking herself of to the Doctors as she thought she might have the same problem. Aunt was far more prone to falls but could still cook a ‘proper’ meal of meat and veg until about 6 weeks before she passed away. She just needed instructions to follow. Mum meanwhile went from being able to cook lovely meals to forgetting how to use a kettle within 9 months. But as we all know even with the same diagnosis the paths are all different.
the only time I ever saw my Mum angry pre dementia was when I cut my hair aged 7 and l lied and said my friend had done it. I was smacked for lying rather than the hair cutting. I think that is why it gets to me now.
Thanks for taking the time to reply @annielou. Yes I think your Mum was like your Mum and Mum forgets to talk louder and she too goes quieter if there is anyone else around.

 

[Woo2]

It’s very difficult isn’t it , the lockdown is having a detrimental effect on everyone , dementia and not , my mum too is deteriorating , she gets bored and frustrated and could easily get aggressive I’m sure . She seems unsure who I am sometimes ,MHT are sadly really not interested unless she is violent . Glad you had some good conversations amongst the more challenging ones . Hopefully you can get a tenant in soon .

 

[Bikerbeth]

Thanks @Woo2
At Mum’s care home they have phones in the rooms. When she first went there she would ring people but it stopped last year. Over the last few months I get a ‘phone call’ from her usually late at night. When I answer and say Hello I don’t get any reply but I can hear her moving around. In the past I would ring up the home and ask them to check up her but now I just stay on the line until it goes quiet again.
I just find it amazing that Mum can ring me even if she is doing it with a quick dial or last dialled number button.
Staff have told me that she does not know how to use the call button, even though I tried with her when she first arrived.
one of life’s many mysteries

 

[gm1632]

This is interesting. I definitely have noticed mum eating more sweet stuff. Also, first constantly flipping between tv channels, now, usually, having me do it. Foods she likes or doesn’t changing quite quickly. Both saying she’s hungry and then turning down 4 different options. Though I suspect the food thing is frustration, as she now has to depend on others to cook for her. Also she has IBS which doesn’t help!

 

[Bikerbeth]

So one of the good Carers rang me tonight about 6.30pm asking me if I would speak to Mum as she was determined that she was leaving.
Mum started talking at 100mph and I found it hard to keep up. How much did it cost to stay where she was and then she said she was working, she’s been up the road but the sheep were on the crossing and the oven was falling down and so on hardly taking a breath. This evening though she knew who I was because she told me my brother had rang her today but asked me what his name was. She told me her Dad had visited her but was sad that her Mum hadn’t and did I know why not. I just said bad weather had blocked the roads and I am sure she would be visiting soon. It was like she had to get all the words out of her head as quickly as possible.
When I could get to say something I did suggest to her that as it has been such a busy day it may be a good idea to have a sit down and a cup of tea. No mention of leaving though.
Saw the programme on telly tonight about care homes and cried.

 

[Bikerbeth]

This is interesting. I definitely have noticed mum eating more sweet stuff. Also, first constantly flipping between tv channels, now, usually, having me do it. Foods she likes or doesn’t changing quite quickly. Both saying she’s hungry and then turning down 4 different options. Though I suspect the food thing is frustration, as she now has to depend on others to cook for her. Also she has IBS which doesn’t help!

Welcome @gm1632 to this forum but sad for the circumstances that bring you here. There are lots of helpful members on here with far more knowledge than me.
I think when Mum asked me for the sugar, it just took me by surprise.
I must admit following advice of here I quickly limited the need for Mum to make a choice. In her early stages I might provide 2 options but as time went on I would just say we are ‘having chicken for tea’. I also noticed if we went out with anybody she would visibly relax if I just said something like ‘ look Mum they have gammon and pineapple on the menu - your favourite - do you want that?’ She would always say yes.

 

[jennifer1967]

This is interesting. I definitely have noticed mum eating more sweet stuff. Also, first constantly flipping between tv channels, now, usually, having me do it. Foods she likes or doesn’t changing quite quickly. Both saying she’s hungry and then turning down 4 different options. Though I suspect the food thing is frustration, as she now has to depend on others to cook for her. Also she has IBS which doesn’t help!

hello gm 1632 have you found the triggers to her IBS? my doctor said its quite often the healthy things, lettuce, cucumber, cabbage and grapes are most of it plus a diabetic tablet. its so painful and miserable. and the bloating makes you feel full. maybe better not to ask but just to serve it up. 4 different options is quite a lot to choose from. your mum might not be remembering the first one by the time you get to the last one.

 

[Woo2]

Oh that was hard @Bikerbeth , you did really well to calm mumy and change the tone, I asked mum if she wanted to watch escape to the Chateau and she said No as he wants me to go in with him ! Goodness knows what she was thinking .

 

[annielou]

Sorry you and your mum had such a confused call, bless you both. She sounds really confused and you did well letting her get everything out and keeping subject off leaving. I hope she did settle down and have a cup of tea. You probably needed to do the same afterwards too ? ?

 

[Bikerbeth]

I am not sure I calmed her as such @Woo2, more like just let her run out of steam.
It would be so helpful if sometimes we could understand what they are saying/ thinking.
I spoke to the night nurse about 9pm @annielou and apparently she was fairly ‘hyper’ until just after 8.30pm. Mum had just taken herself off to bed and was settled. Hopefully it remained so although she does frequently get up in the night and starts wandering around or packing to leave

 

[Woo2]

Mum wanders ever such a lot from about 3pm and does so in the night too , i find it hard to understand her and she gets annoyed that I can't understand, so we could go in circles, it is incredibly upsetting and frustrating. You did the best you could under the circumstances.

 

[Bikerbeth]

So they rang me because Mum was refusing her jab. She was really agitated and they asked me to talk to her which I did and she staid she would have the jab after about 5 mins. They said they would keep me on the phone whilst they injected her. So close to tears because all I can hear is a staff member repeatedly shouting your daughters on the phone whilst the nurse is telling Mum what she is going to do. Ends up,with Mum having the jab but she is shouting and screaming and hits the staff member. I know there is a pressure to get through the residents but surely with dementia residents they could have kept it all calm and quiet and given them some extra time.

 

[annielou]

That doesnt sound nice. If your mum had got upset before then things had probably got quite loud but I’m with you surely once your mum agreed everyone should have been trying to be calm and quiet to keep your mum calm. Maybe they’d already tried everything else before calling you but on the surface they dont sound to have handled it well.
In mums CH a lot of the staff were quite loud talkers and all quite bubbly but while visiting mum in last few weeks I noticed how they handled and spoke to different residents slightly differently to suit their personality and their moods too. I was impressed by how they handled people especially on an afternoon/evening when sundowning and wandering started and when taking some residents to shower. One man could get quite grumpy and be rude to staff especially the female staff and he would shove things about in anger. I was talking to another carer one day when he kicked off and she said they’d figured out if a man spoke to him sternly he would quieten down and go to his room for a bit. One of the lads working there was so gentle and had a soft voice but that day he put on this really deep stern voice and told the man to Stop that now you cant do that now lets go to your room and calm down and the resident went with him. What was funny though was as soon as they started walking away the lad went back to talking normally and the resident was still fine with him. Another resident who got upset and frustrated at times they used to get her something to stroke and cuddle to calm her down she often had a doll or toy cat with her when upset. I’m sure things didn’t work everytime but I was quite impressed at how used different approaches with different residents.
I think you said you’d told then your mum likes wildlife programs and that might calm her down when stressed, maybe they could have tried that beforehand. I do think they should have at least tried to keep voices gentle and calm when doing injection. I hope things calmed down afterwards for your mum. It must have been really hard for you to hear ??

 

[jennifer1967]

thats what person-centred care is all about. to know the right way for that person. sorry you had to hear it at the end of the phone when there was nothing you could do. i remember when i phoned the hospital about my nan and heard someone screaming,she couldnt talk, and asking is that her and they said yes they were washing her but it sounded a lot worse. never forget that. horrible

 

[Sarasa]

I'm glad your mother has had the vaccine @Bikerbeth, but so sorry that it was such a traumatic event for both you and your mother. I hope she'd forgotten it by now.
Is it worth talking to the manager or whoever is in charge at the moment about it, as it doesn't sound as it was handled in the best way.

 

[Bikerbeth]

Thank you @annielou and @jennifer1967. I just felt so helpless hearing her shouting and screaming. I found out afterwards that each resident was paired up with a staff member. (Face book photos) To me they should have paired Mum up with a male career or at least the caretaker (who Mum adores). Maybe they did and it didn’t work but the career who rang was one of the younger girls. You are both right about the importance of person centred care..
I did ring the home later and a staff member rang me back from Mum’s room with Mum. However the carer must have knocked Mum’s coat on the floor as Mum said ‘hello’ and then told me to wait as she needed to hang her coat up - but she never came back so I think she has possibly forgotten all about it whilst I sit here dwelling on it.
good suggestion @Sarasa - I will see if I can have a chat with the clinical lead to at least see if it could be more positive for the 2nd one - could I sit outside the window. At least as you say she has at least had the vaccination.

 

[Bikerbeth]

On balance a really good visit with Mum. Wrapped up in lots of thermals and a travel blanket I headed off to see Mum at her Care Home. After temperature and signing in I settled outside the visiting room. Door is open but screen across inside. Mum comes in with the receptionist who passes on an apology from the Carer to say that Mum was adamant that she was wearing those trousers today. Basically bright red tartan pj bottoms. We choose them last year about this time and she thought they were lovely then so it made me smile.
the first part of the visit was the usual complaining about staff fussing too much, bossing her around and what is frustrating her but nowadays unfortunately not very coherent. She then started chatting away about what she had been doing already - been to hospital, shopping , met some friends for coffee in town. Told me about the dress #he had made to go to the dance but then something happened and she couldn’t go but she would wear the dress another time. She asked me some questions to do with a place we used to live (me being her sister at this point). It was all happy chatting and smiling so was brilliant even if nothing really made sense and that did not matter.
usually when I see the next visitor arrive I say to Mum that I will have to go to work soon or I need to go as it is so cold but it seems that the Home must have extended time between visits for cleaning so I had not seen next visitor when receptionist came in and said that it was time for the visit to end.
mum got a bit distressed as she was in mid flow and I could see her getting quite cross. I told her I loved her and put my hand up to the screen and she put hers up to which is what we usually do at the end of the visit. Hopefully that distracted her enough.
After sending off a certified copy of the LPA to quite a few institutions I had my first part loss. They said in an email via there secured system that they only received 3 out of 7 pages and they needed the document in its entirety. I replied via the secure system asking them to please check and I though I would try sending a scanned copy to them via their secure email system. Not hearing anything back I gave them a ring 10 days later. They told me their system was down and they could only answer general questions. I asked if they would accept the scanned copy and I was told definitely not and that it needed to be the original or a certified copy. So after visiting Mum I stopped at the post office and sent another one to them, signed for. Mail arrived 2 hours later to my house from said company saying the LPA was all registered with them. Confused I am but finally I think I have notified everyone and had the LPA registered.
I made some cherry scones this afternoon to celebrate. I think last time I made scones I was at school. Not perfect but certainly edible.
So yes a good day.