Sugar in her coffee

[Woo2]

Wales by bike sounds great @Bikerbeth , shall keep fingers crossed for the weather . I know little about it but my mum gets alot of clothes out , she did at home with my dad too. I try to distract her from spending too long in her room but once she goes in after her wash and shuts the door I know what’s going to happen . I nip in there quickly if I can and put bits away but not always possible . She doesn’t seem upset by it though . I hope your next visit is better . X

 

[Sarasa]

@Bikerbeth, when mum first went into her home I visited three times a week. Since October I've cut that down to once a week most weeks, though there are times when due to various reasons I do go twice. It seems to work better for both of us. I get to check up that she's fine, and she seems pleased to see me. I do disappear while she's in the loo otherwise she gets upset and wants to come with me.
Mum and I have always got on, though we are very different people, but for most of my adult life lived nowhere near each other so only met up a few times a year. Even after my dad died and she moved nearer to me and my family, I still only saw her once a fortnight or so. It was only the last couple of years she was at home, when things were starting to unravel that I visited more regularly. I now feel things are moving back to how they usually were.
Maybe go less frequently and see how that works.

 

[jugglingmum]

This Cafe isn't far from the ponderosa. I'm a cyclist and it is on my normal route home from the ponderosa.

 

[Sirena]

OH says I try to hard. She used to enjoy the walks but not so sure now.

I think he's probably right. You have done so much for your mum, and it may now help to step back a bit and reduce your visits. You know she has good care. I don't think you will ever recognise the mum that her friends describe - my mother's friends talked about a totally different person to the one I knew (and I did know my mother pretty well).

Was it just an off day or have you noticed she isn't now interested in walks in general? I did notice that my mother became unable to 'connect' with things I pointed out - even when I was pointing out wildlife that in the past she would have loved. Unfortunately it is inevitable that their world does shrink. Do the carers tell you anything your mother particularly enjoys at the moment? If so, you could focus more on that.

 

[Bikerbeth]

Thank you @Woohoo, @Sirena and @Sarasa for your replies and comments.
@Sarasa. I guess I had a similar visiting pattern to you earlier on in my life. When Dad died I would go and see Mum monthly or invite her to me for a few days. Once I realised she had problems and she had the diagnosis it turned into weekly overnight visits. So visiting 3 times a week is not really normal for either of us. I guess I was also trying to make up for her not seeing her friends so much but the reality was that she did not see them often anyway as only a few are remaining.
can I ask you @Sarasa if you visit on the same day each week? Mum does not know what day it is and how long it is since she last saw me. I was just curious if you thought it made any difference to your Mum.
@Sirena . I have found that Mum is not as keen to walk so far. She was comfortably walking 2 miles but the last few times she has wanted to shorten her walk - I have asked her if her arthritic knee hurts but she says that it is fine and when it does hurt she will show me how swollen it is. I have also noticed if I said to Mum that it ‘would be nice to come back here in the Summer when it is warmer’ I no longer get a reply whereas previously she had always agreed with me. I have seen photos of her looking happy with the PAT dog and when they have done some ‘cooking’. They also take her to a music for memories event run by a local dementia charity which she lives but if they have a music event in the CH itself she will disappear back to her room. She doesn’t join in the seated exercise classes or the craft type activities. I will follow up on your suggestion and have another chat with the activities coordinator to see if she likes anything else and perhaps see about joining her for that.

 

[Sarasa]

Hi @Bikerbeth, when mum first moved into the home I'd say things like 'I'll be over on Tuesday.' At the time she seemed to know what day it was. Certainly one Tuesday I arrived after lunch and the carers said she'd refused to do anything in the morning because I was coming. After that I just said 'see you soon.' Now I don't say anything, just disappear. Mum would get upset if I said goodbye, and either want to come with me, or wonder where in the home I was living. On several occasions she thinks I've been locked into a cupboard by the carers and has gone round trying to find me.
I've decided Wednesday will be my 'usual' day, but last week it was Thursday and this week I'm there tomorrow afternoon for her birthday and Thursday morning to help with a World Book Day event. What I do try and do is arrive about 11.30 so I can take her to the morning activity if I think she'd enjoy it, and I disappear just before lunch. Wednesday is quite a good day to go as the hairdresser is in, and that makes for a fun thirty minutes, as having her hair washed and blow-dried cheers mum up.
The home has tons on, activities both morning and afternoon, trips out etc. etc. I've asked that mum is encouraged to take part more, but unless I take her she often doesn't go. I think this is partly because she is no longer interested, or actually understands what the activity is, and partly because if she gets bored she wonders off and a carer has to go and track her down in case she gets up to mischief. The residents of the home whose dementia isn't so advanced, or who have physical problems have loads of fun, they've had nude life-drawing classes for instance and the other week the place was awash with flying ducks for National Bird Watch Week. Mum is past all that now, though she enjoys the music events, and they've got in a dance display for her birthday tomorrow.

 

[Sirena]

@Bikerbeth if your mother wants to go for shorter walks, I wonder if she is beginning to feel a bit anxious outside, or maybe she no longer entirely enjoys what outdoors has to offer. She may also be fairly set in 'now' which is why she doesn't respond to comments about returning to a place in the future - her sense of time is failing and the future becomes an ungraspable concept.

My mother loves visits from animals, and also music sessions, so that's similar to your mother. Good idea to chat to the activities lady. My mother also likes having her nails painted, which the activities lady does for any willing residents. If that is something your mum likes, you could have a hand & nails session when you visit. Last Mother's Day I took a couple of bottles of nail varnish which was well received, so I'll do that again this year.

 

[Bikerbeth]

@Sarasa i hope your Mum enjoyed her birthday celebration. Thank you also for the comments about the activities at your Mum’s care home. It also gave me some ideas about visits going forward.

 

[Bikerbeth]

Some goods thoughts @Sirena - I am going to keep walks shorter and just go to places she already knows. It is interesting how Mum is adamant that she has never been around parts of the care home but will tell me as we walk along that up ahead is the coffee shop or a pond or the train station as appropriate despite the whole location being new to her.
Mum is not really a hands/nails person but she is having her hair done each week as she does like that

 

[Bikerbeth]

A few thinks packed when I arrived yesterday but soon unpacked whilst I just needed to use her bathroom. Successful trip to Doctors with Mum to get her referred again for a minor eye op. Made another appointment for a meds review and asked for a check since it is a year since her official diagnosis and not sure of the process in this area. Also parked a short distance from the Doctors so we had a walk too.
I also told one of the nurses at the home that I was fed up with the clinical nursing manager keep putting of our meeting to discuss Mum’s care plan. Anyway this really helpful nurse took me through Mum’s plan explained a few items that I was unclear about but also agreed with some of my suggestions. It was also interesting to see some of the changes they had noted since Mum had arrived. Mum is definitely sleeping more- some days going to bed at 7pm but generally still getting up at 8am. I think she still likes the quiet time in the morning talking to the carers until the others on her floor get up.
It was sad though, I usually leave at lunch time but for various reasons I ended up staying. I did stay whilst she was having her lunch and the kind staff made me a sandwich to eat with her. After we had finished we headed back to her room and I picked up my bag and coat. Mum did exactly the same and said ‘ that was a nice meal but I will be glad to get home for a nice cup of tea’. You could then see that she realised she had got it wrong and she hurriedly put her coat back down and said I just need to check my comb is in my handbag’

 

[Bikerbeth]

Feel better about my concerns today. Senior carer on Mum’s floor had booked an appointment with GP to have Mum referred to the mental health team as she was concerned that Mum’s confusion has worsened along with her anxiety. So glad I had already made an appointment for Mum for this purpose despite being made to feel that I was wasting peoples time by the manager. (She is leaving shortly)
Managed to talk Mum into having a shower and then we did go for a short walk nearby which she seemed to enjoy. She was happily talking away but I am not sure what about at times, at other times there would be some vague connection - so I said we had finished painting the lounge walls and Mum said that’s the problem with living in a 6 bedroom house ( neither of us have ever lived in a 6 bedroom house)
Mum also seems to be putting on weight as the trousers we brought in September are rather tight. To be honest I am not worried about it - Mum is ninety with Alzheimer’s- if eating cake and ice cream makes her happy then that is fine by me. I understand that generally she is eating breakfast and one ‘proper’ meal each day anyway.

 

[annielou]

Sounds like the carers are better than the manager, hopefully if she is leaving shortly her replacement will be better. Its good you got to go through plan with someone at last and they listened to your suggestions and explained things and I hope the medication review comes up with something to help mums anxiety ?
You shouldn't be made to feel bad for asking and wanting to know how mum is doing and what they are doing for her. I don't think people should have to ask, I wish there was a set procedure and people just told you what you need to know and when things will happen rather than having to guess. How are people supposed to know what to ask and when things might need chasing up. ?
That must have been upsetting mum getting coat etc when you went to leave yesterday, bless her and you. X Sounds like she realised she lives there now though and tried to cover rather than get too upset about it, hopefully that might mean she is settled there. X
On a lighter note, I bet you're always decorating those 6 bedrooms of yours ? sometimes you have to wonder where these thoughts come from. X

 

[Bikerbeth]

You shouldn't be made to feel bad for asking and wanting to know how mum is doing and what they are doing for her. I don't think people should have to ask, I wish there was a set procedure and people just told you what you need to know and when things will happen rather than having to guess. How are people supposed to know what to ask and when things might need chasing up. ?

Too true
I had a phone call tonight with the carer saying that Mum wanted to speak to me. Mum came on the phone and was crying her eyes out. I could not understand most of what Mum was saying so just let her talk and made what I hoped was some reassuring noises. Once she was coming to a stop I asked her to take some deep breaths with me which she did. I told her I loved her lots and I was sad she was so unhappy. She told me the staff were pushing and shoving her around when she tried to leave and that the food was abysmal and she was hungry. Please would I find her somewhere else to live. I spoke to the nurse again and suggested that one of the Carers could put Crufts on the television as it would probably distract her enough to settle before bed. Speaking to the nurse Mum had been unsettled and anxious this morning but they had managed to distract and settle her. This evening she had gone into full blown sun downing mode. They do have my permission to ring me if Mum asks to speak to me . Upshot was that they were going to contact a Dr to see if they could get a visit.
It is hard not to jump in the car and go down there ...............
I am on a follow up course tomorrow following the 6 week x 2 hour course Dementia course I did last year so hopefully I can get some support there.

 

[annielou]

Oh @Bikerbeth what a sad and upsetting call to get. So hard not to get in the car and rush to see her I bet, but I think you did all you could to reassure over the phone and gave carers at the home a good idea to help settle her. I don't think you could have done more and if you did go after the call it might have upset mum even more, especially when you came to leave, or if she'd started to calm down with carers after calling it might have set her off again.
It sounds like your mums anxiety seems to have increased lately so I hope the gp does refer to mental health team and there is something that can help her anxiety. Its awful for both of you when your mum is so upset and worried and so hard to know what to do to help but you seem to know some really good ways to help your mum when she is anxious and confused. I wish I was as quick and good at reacting to mum as you are.
I hope your mum has a restful night and your course tomorrow is helpful x
Hugs (X)

 

[Bikerbeth]

Oh @Bikerbeth Its awful for both of you when your mum is so upset and worried and so hard to know what to do to help but you seem to know some really good ways to help your mum when she is anxious and confused. I wish I was as quick and good at reacting to mum as you are.
Hugs (X)

I am not so sure about that but I was lucky enough to attend the course last year run by the local dementia charity and I watched some of the Teepa Snow videos. All which take time which is not always possible when you are a full time carer. You do so well relying on your instinct.
Hugs gratefully accepted

 

[Sarasa]

Sorry that your mum was so upset @Bikerbeth. I had a few phone calls like that when mum was first in the home, I found distraction worked up to a point, but as @annielou says you have some very good strategies. It is tough, but you know if you did take her home, either to hers or yours, or you found her a different Care Home she would still get upset.
Mum also complained about the food and the carers. I think the first was justified as they now have a new chef and everyone agrees the food has got better. On Thursday everything had garlic in it as I guess it was World Garlic Day. It sounded an interesting menu,. According to the carers she eats well, and she's certainly put on about a stone since she's been there which is good as she was getting a bit thin. As to the carers, mum also complains about them, and throws in a few racist comments as well. That is so unlike mum, who's earlier self would have been horrified as some of her remarks. I think it's because several of the ones who work hardest to ensure she showers every few days are West African. I do keep an eye out when I'm there, and have seen nothing to give me cause for concern.
Hope the course is good today. I'm doing the on-line Wicking Dementia Centre MOOC Understanding Dementia at the moment which is very interesting.

 

[Woo2]

Oh @Bikerbeth I’m sorry I just caught up with this . That’s sad , I’m glad you was able to calm mum , if you had gone straight there it might have started off a precedent where if she gets upset she will be expecting you to rush down there so think you handled it really well . Hope dr has some ideas and mum is calmer . Sending a big hug . ? X

 

[Bikerbeth]

Thanks @Sarasa. I do know that I could not have Mum living with me or that she could go back to her bungalow so although it is tough listening to her crying I am very clear about that in my own mind. I know that neither would work. She did say to me today that ‘nobody wants me’ but I choose to ignore the comment completely. We also had the ‘I’m going home tomorrow’ Mind you she had told my brother this morning on the phone that she was fed up of living in France (she has never lived in France)

World garlic day - must admit I have never heard of that before. I think Mum would have stuck to the fried egg sandwich she ‘requested’ today. I would have gone for it though.

I know what you mean about the comments. I too have noticed a change over the last few months by Mum - the activity coordinator is referred to as the big fat girl whereas I say‘V’ with the colourful hair.
The course was very good - done by a researcher in mental health/neurology whose parent developed Alzheimer’s so he used his background to help his parent. It was giving information/strategies for depression and anxiety for both PWD and carers.
I had signed up for the course you mentioned but as I have an exam for something else in 4 weeks time I needed to give that priority. Glad you are finding it interesting
Care Home nurse did ring up early afternoon when I was on the way to see Mum to say Doctor did not come out last night as there was no reason too! I need to follow up with the nurse that was on duty at the time. Nurse seemed to just tell me that Mum was getting anxious to see me. They seemed very short on staff today but perhaps I am being cynical.

 

[Bikerbeth]

Oh @Bikerbeth I’m sorry I just caught up with this . That’s sad , I’m glad you was able to calm mum , if you had gone straight there it might have started off a precedent where if she gets upset she will be expecting you to rush down there so think you handled it really well . Hope dr has some ideas and mum is calmer . Sending a big hug . ? X

Thanks @Woohoo - that was my thought too. I did not want to set a precedent. I did go last time it happened but it was morning and I was going anyway.

 

[Woo2]

It’s a shame we have to think that way, Dementia hey the gift that just keeps on giving , or should be taking away . hoping for calmer times for you both . X