• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Sugar in her coffee

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
Took one of my friends to see Mum today. Mum knows her well but today she did not recognise her. Friend mentioned how much Mum had deteriorated since October when she saw her for Mum’s birthday. As much as she likes Mum I don’t think she will visit again.
Mum was in full complaint mode today. She wanted to move rooms as she is stuck at the end of the corridor (5 rooms in total on her side) and therefore nobody pops in to see her. I mentioned that room was chosen as she wanted a quiet room but she could move room if she wanted to. Again I take this as a positive that she is talking about moving rooms rather than going home. We also had a 2 hour loop of ‘she was cross as the staff would not give her a ticket to go out on her own’ distraction only worked for so long so foolishly I tried the line of reason: fire regulations etc, because she is a bit forgetful they need to make sure she is ok but without success on my part. So I said she should talk to the Manager when she was free and one of the lovely reception staff sitting nearby said I’ll let you know when she is free but could you help me take the Christmas decorations down after lunch. I took that as my cue to leave
 

annielou

Registered User
Sep 27, 2019
511
Yorkshire
Thats a shame todays visit didn't go well. Distraction has very rarely worked with mum so far, well done to reception staff for the decoration suggestion. Funny how other people seen to distract easy than the regular carer/family. That sounds positive that mum is talking about moving within the home rather than out of it x
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
Thats a shame todays visit didn't go well. Distraction has very rarely worked with mum so far, well done to reception staff for the decoration suggestion. Funny how other people seen to distract easy than the regular carer/family. That sounds positive that mum is talking about moving within the home rather than out of it x
It was quite strange as my friend is an extrovert and will chat to anyone about anything but faced with my Mum she was very quiet. I think it just goes to show how some people have special skills that are frequently undervalued.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
It was quite strange as my friend is an extrovert and will chat to anyone about anything but faced with my Mum she was very quiet. I think it just goes to show how some people have special skills that are frequently undervalued.
Dementia is a hard to approach if you don’t have any previous experience. It’s a fine balance of suitable distractions along with the skills of a children’s entertainer I have found in my experience.
The permanent happy persona I find works leaves me drained.
I’m afraid it can be a lonely path visiting but I used to take my dog in with me as a distraction technique & keep visits short if responses weren’t positive. Also visiting in the communal lounge when activities were on meant I got to spend time participating in Care home life.

looking back now I know I tried my best to be part of the care homes daily life & that was the best I could do.

yes it’s awful the realisation that visiting & other social interaction is yours & yours alone.
Looking back now before dementia how often did I previously visit Mum & Dad & vice versa? Hindsight is a wonderful thing, & the logic thought it has brought has been of comfort.

You are doing an amazing thing, that only few of your friends have experience of
Sending you a ((((((((((((reallybighug))))))))))))
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
Dementia is a hard to approach if you don’t have any previous experience. It’s a fine balance of suitable distractions along with the skills of a children’s entertainer I have found in my experience.
....................


Looking back now before dementia how often did I previously visit Mum & Dad & vice versa? Hindsight is a wonderful thing, & the logic thought it has brought has been of comfort.
))))
Aw thank you for the hug Funny friends leads cubs, brownies, beavers etc so should have been a good entertainer - I think it was just a shock to her.
Me and Mum were not close so visits tended to be monthly especially whilst she could still drive and get out to see her friends easily. Last year was Early Monday morning to late Tuesday and I found that hard. Currently visiting 3 times a week. Tend to go in the mornings and leave before lunch. As w/e are quiet I try and stay for lunch on a Saturday too. Obviously there is a guilt monster lurking because I have moved Mum away from her few remaining friends so I feel I should go more often. However when I left today receptionist was going to get Mum to help her take the decorations off the Christmas trees and Mum seemed happy with that idea
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
An 8 out of 10 day today. Arrived at CH to see Mum at 9.30am and she had only just woken up. Unusual for her but she said she had been tired yesterday and had been sick in the night ( staff said she had not told them). She went up to the small lounge/diner and had her breakfast there and I had a coffee. I am ok with admin care for Mum but always struggled with any form of personal care. (Sounds pathetic based on what so many people on here do for their PWD day in/day out) Mum is not washing/showering unless the senior carer is on and she was not working today. So I said to Mum after she finished her breakfast that as we were going out to try some clothes on for her, was she going to have a shower? She surprised me by readily agreeing. So I think fine I will sit in her bedroom whilst she has a shower in the en Suite. No that was not going to happen. Ended up passing shampoo, helping her rinse it out, passing the soap etc. Swilling her down when her back was still soapy. So pathetic or not I was quite pleased with myself. headed off to a small retail park but it does have a large M&S there. Undies were today’s items. There was a lovely lady there who was absolutely fantastic and between us we managed to get Mum fitted properly for a bra. No idea if she had any direct experience of a PWD but spoke to Mum but glanced towards me for confirmations when Mum replied to her. She was also very patient when Mum stumbled with her words. So so pleased when people still talk to Mum. With New bras, knickers and socks purchased it was a light late lunch in the cafe there. Had a quick look for some birthdays cards and then headed back to the CH. The maintenance man had put a temporary fix to a problem in Mum’s room until it can be sorted out properly so that was good. Left Mum smiling with one of the cleaners chatting to her. So writing this maybe 8/10 should go to 9/10 but had issues with the permanent contract the CH wanted me to sign due to errors in it. Also will ‘write’ to store with persons name to say how excellent the member of staff was.
 
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DesperateofDevon

Registered User
Jul 7, 2019
2,580
An 8 out of 10 day today. Arrived at CH to see Mum at 9.30am and she had only just woken up. Unusual for her but she said she had been tired yesterday and had been sick in the night ( staff said she had not told them). She went up to the small lounge/diner and had her breakfast there and I had a coffee. I am ok with admin care for Mum but always struggled with any form of personal care. (Sounds pathetic based on what so many people on here do for their PWD day in/day out) Mum is not washing/showering unless the senior carer is on and she was not working today. So I said to Mum after she finished her breakfast that as we were going out to try some clothes on for her, was she going to have a shower? She surprised me by readily agreeing. So I think fine I will sit in her bedroom whilst she has a shower in the en Suite. No that was not going to happen. Ended up passing shampoo, helping her rinse it out, passing the soap etc. Swilling her down when her back was still soapy. So pathetic or not I was quite pleased with myself. headed off to a small retail park but it does have a large M&S there. Undies were today’s items. There was a lovely lady there who was absolutely fantastic and between us we managed to get Mum fitted properly for a bra. No idea if she had any direct experience of a PWD but spoke to Mum but glanced towards me for confirmations when Mum replied to her. She was also very patient when Mum stumbled with her words. So so pleased when people still talk to Mum. With New bras, knickers and socks purchased it was a light late lunch in the cafe there. Had a quick look for some birthdays cards and then headed back to the CH. The maintenance man had put a temporary fix to a problem in Mum’s room until it can be sorted out properly so that was good. Left Mum smiling with one of the cleaners chatting to her. So writing this maybe 8/10 should go to 9/10 but had issues with the permanent contract the CH wanted me to sign due to errors in it. Also will ‘write’ to store with persons name to say how excellent the member of staff was.
That sounds like a 10/10 day or as I like to categorise those a prancing pink unicorn With fluffy clouds & rainbow!
 

Sarasa

Registered User
Apr 13, 2018
872
The trip to Marks seems like a 10/10 to me and as for the care home I reckon 8/10 is about as good as it gets, so all in all a brilliant day.
When mum lived at home every visit included lunch in the local Marks. I got very fed up of their egg mayonnaise sandwiches, as their veggie options were rubbish, but it is something I miss doing with mum now. The last time I took her shopping in September she was struggling, and I'm not sure she'd manage at all now. Unfortunately I don't have a car so that limits my options somewhat.
 
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Dimpsy

Registered User
Sep 2, 2019
1,045
I think writing a letter to M&S is a lovely idea, people can be quick to complain over bad service and it's just as important to give thanks when praise is due. It is heartening that so many employers send their workers on disability awareness courses, dementia included.
It really does sound as if your mum is settling in nicely, especially if she is noticing other rooms which she thinks are better than hers.
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
I think I had better upgrade Monday then as far as Mum goes to 10/10. Thank you @Sarasa and @DesperateofDevon for putting a better perspective on it.
Today Mum was still in bed when I arrived at 9.30. She said she had had bad dreams again but not nightmares so she woke up ‘feeling out of sorts’ and she said the top of her arm hurt. The carers has been trying to get her up for a shower or to have some breakfast but she had refused them several times. Apparently she had not told them her arm hurt though. Anyway I said I was getting a coffee and would she like one and she said Yes. So I asked if she wanted some toast as well and she agreed to that. So unusual for her to stay in bed but she drank her coffee and ate her toast whilst I sewed some labels on some clothes and we had a chat about how she was feeling. Mum was due to have an eye operation next week and I have been mentioning it to her over the last few weeks but she has seemed very reluctant (whereas this time last year she was definite she wanted her cataract operations done). This morning she asked me to cancel it and was very firm about it. I waited a couple of hours until she was less muddled and talked about the operation and benefits and she still said she did not want it. After the cataract operation one of the lenses has gone cloudy and really did need a quick laser clean (as I understand it). However I still feel that Mum does still have the capacity to make some decisions even if they are bad ones in my opinion so reluctantly I have cancelled it. I think as she does not read as much now it does not seem to bother her. I hope I do not regret it.
The new activities coordinator ‘bounced’ in to Mum’s room to introduce herself. Seems very enthusiastic and had left her last care home reluctantly but basically because they did not have any funds to do anything unless it was close to free. So I feel lucky that Mum is where she is.
Mum was brighter by lunchtime so after getting her to have a shower I left her to eat. Also managed to get her suitcases out of her room ‘to put in the luggage room’ so hopefully she will not be climbing on chairs anymore to see what is in them. Will keep them at mine for now but hopefully she will forget about them.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I think I had better upgrade Monday then as far as Mum goes to 10/10. Thank you @Sarasa and @DesperateofDevon for putting a better perspective on it.
Today Mum was still in bed when I arrived at 9.30. She said she had had bad dreams again but not nightmares so she woke up ‘feeling out of sorts’ and she said the top of her arm hurt. The carers has been trying to get her up for a shower or to have some breakfast but she had refused them several times. Apparently she had not told them her arm hurt though. Anyway I said I was getting a coffee and would she like one and she said Yes. So I asked if she wanted some toast as well and she agreed to that. So unusual for her to stay in bed but she drank her coffee and ate her toast whilst I sewed some labels on some clothes and we had a chat about how she was feeling. Mum was due to have an eye operation next week and I have been mentioning it to her over the last few weeks but she has seemed very reluctant (whereas this time last year she was definite she wanted her cataract operations done). This morning she asked me to cancel it and was very firm about it. I waited a couple of hours until she was less muddled and talked about the operation and benefits and she still said she did not want it. After the cataract operation one of the lenses has gone cloudy and really did need a quick laser clean (as I understand it). However I still feel that Mum does still have the capacity to make some decisions even if they are bad ones in my opinion so reluctantly I have cancelled it. I think as she does not read as much now it does not seem to bother her. I hope I do not regret it.
The new activities coordinator ‘bounced’ in to Mum’s room to introduce herself. Seems very enthusiastic and had left her last care home reluctantly but basically because they did not have any funds to do anything unless it was close to free. So I feel lucky that Mum is where she is.
Mum was brighter by lunchtime so after getting her to have a shower I left her to eat. Also managed to get her suitcases out of her room ‘to put in the luggage room’ so hopefully she will not be climbing on chairs anymore to see what is in them. Will keep them at mine for now but hopefully she will forget about them.
Dementias twists & turns aren’t something we can prepare ourselves for emotionally.
we can rationalise so much then Bang! Emotions kick in!

thought I’d make you smile - hopefully
At Dads funeral we played his favourite music, one track quite boppy found Aged Mother enthusiastically nodding along
( it was almost head banging!!!!) fortunately no I’ll side affects to this unusual activity!

at least she enjoyed her day out! xx
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
Dementias twists & turns aren’t something we can prepare ourselves for emotionally.
we can rationalise so much then Bang! Emotions kick in!

thought I’d make you smile - hopefully
At Dads funeral we played his favourite music, one track quite boppy found Aged Mother enthusiastically nodding along
( it was almost head banging!!!!) fortunately no I’ll side affects to this unusual activity!

at least she enjoyed her day out! xx
Don’t tell me you were playing a bit of Status Quo:D
Mum does not really listen to music/radio but years ago she went into a shop, liked the music, asked what it was and came out with Meatloaf - bat out of hell :rolleyes:
 

Sarasa

Registered User
Apr 13, 2018
872
It's a shame you couldn't persuade your mum to have her lens cleaned next week @Bikerbeth. When I had mine cleaned I had just gone to see my consultant as my other eye had developed a cataract. He cleaned the lens in the eye he'd done a couple of years previously on the spot. I think if I had time to think about eyes and lasers I might have been decidedly apprehensive. as it was I didn't have time to think. I also found the fact colours looked so bright cheered me up no end. Still you can't force her to do it.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
:D
Don’t tell me you were playing a bit of Status Quo:D
Mum does not really listen to music/radio but years ago she went into a shop, liked the music, asked what it was and came out with Meatloaf - bat out of hell :rolleyes:
Nooooooo!:eek::po_O:p:D Love it!
No it was M.T.A by the Kingston Trio....
But it was played during the committal, Mums choice....
The chorus is
“Well he never returned no he never returned & his fate is still unknown ....”

seriously I couldn’t have written it ... life is stranger than fiction at times!!!!!:eek:
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
:D

The chorus is
“Well he never returned no he never returned & his fate is still unknown ....”

seriously I couldn’t have written it ... life is stranger than fiction at times!!!!!:eek:
life certainly can be stranger than fiction - see you what you mean not Status Quo but just listened to it and it made me smile
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
It is a shame @Sarasa. I don’t think it is even the operation (or being worried about it) it just seems that her brain is saying it can’t cope with anything else until it has processed what is/has been going on. If that makes sense. I am not sure if I am putting my thoughts on her actions but it just seems similar to when I left a really stressful job and could then only do 1 thing at a time or I fell apart. If Mum continues to settle I will take her to my optician and try getting a referral again down where I live.
I am glad it worked for you.
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
Couple of visits to Mum. New activities coordinator is bubbling over with enthusiasm and sweeping up most of the residents with her energy for the activities she is arranging. Mum tells me she is a reluctant participant but the staff of course paint a different picture. On a side note the activities coordinator has also taken Mum out walking. I took Mum out as well today to a local ‘park’ which used to belong to a stately home but now maintained by council/trust with various paths to walk round. Despite being rather blowy Mum enjoyed.
A new lady is moving in to the room next to Mum on Monday. Apparently she also likes walking but she is apparently at a very similar stage to Mum. I have no expectations of them becoming best friends but maybe it will be someone else for Mum to chat too. Time will tell.
 

Bikerbeth

Registered User
Feb 11, 2019
765
Bedford
This all sounds really positive, but you sound a little worn out; are you alright? x
Thank you for caring. I did not think I was but funny enough OH said exactly the same to me today. I read what others are going through on here and think I have it incredibly easy so don’t see why I should be worn out.
However did have a lovely day out in London. Went for a wander round the Science Museum and then went to see Cirque du Soleil - Luzia at the Royal Albert Hall. Absolutely incredible - the acrobatics were fantastic and the contortionist was amazing. A real treat. I have been wanting to see them for years.