Who am I ? I won't know myself soon!!!

[annielou]

Hubby brought me, it was slow but traffic was moving so we managed. Not sure how it’ll be later when it’s time to go home but will see how go on and maybe hubby will pick me up or I’ll try a taxi. Snow has stopped or slowed down a few times and I keep hoping it won’t get worse?
Mum has seemed less sicky feeling today but she’s very weak. She had slid down bed and carers tried to sit her up to utch her up bed a bit but mum said couldn't do it and just flooped to lay down. They sat mum back up and one carer went to fetch nurse to help so i sat at side of mum on bed and put my arms round mum to hold mum up and she just flopped against my arms exhausted. I told mum I was getting a sneaky hug and stroked her hair while I held her. When nurse came they managed to get mum to stand slightly and slide to side a bit so she could sit back down higher up bed then lay back down. Poor mum was really floppy while doing it and exhausted after. Carer had tears in her eyes as she left bless her.
Mum looked like she’d run a marathon bless her, I said that to her and mum said it felt like it I joked she’d done a mo farah or maybe she’d been Mo farahs pacemaker which made her laugh a little.
She keeps trying to talk and ask things but doesn’t finish as she can’t think what saying. She has asked a few times where she’s going next or why she is here and how long she’s going to be like this. I just keep saying things like till you feel better. Mum says its bit boring cos nothing to do so I mentioned she had her colouring and puzzle book and she said she didnt seem to be in mood now. I asked if she wanted me bring anything in but she said no cos really she not doing anything anyway. She said it’ll be boring for me so I told her I’m never bored with her which made her smile and stroke my hand. I rambled on for a bit at her about bits and pieces and gave her couple of sips of tea.
Mum is still bit uncomfortable and restless she asked if I minded if she a had nap but she’s been struggling to nod off. I just moved her pillows round and helped her move on to her side and am hoping she gets comfy and has a nap now, she said earlier she hasn’t slept though I don’t know if she has as her sense of time of day is mixed up with being in bed all the time.

 

[anxious annie]

Bless your mum, she still has her sense of humour and appreciates a joke. I expect she will be napping. I hope she is more comfortable when you visit today, and your journey is easier. Snow and ice just make everything more difficult, unless you're a child and can enjoy it.

 

[annielou]

Thanks @anxious annie x snow had cleared quite a bit on roads today so easier journey. Mum wasn't better though and it wasn't a good day.
I went to CH half one today and stayed till bout 1/4 to 8. Not sure if I should have come away then or not. Mum was very restless today, uncomfy, exhausted and started feeling sick again later this afternoon. She also struggled to swallow few times and had spit drink out or coughed a bit after she did swallow and also spit a clear gluey phlegm out again a couple of times. Nurse gave her another anti sickness injection early this evening.
Both day nurse and night nurse when she came on shift at 7 asked me if I wanted to know if mum got worse even in night. I said yes, if mum asked for me or got worse I'd come back so I think with them both asking today they might think it close. I told day nurse bout mum struggling with swallowing at times and she said it will just get harder now and said she can't last long without anything and that's when she asked if I wanted notifying even in night and said she'd let night staff know. I wanted to ask if she thought would be soon but as we were in mums room I didn't want her to hear so didn't but think as they both asked me today it might be. Night nurse told me I can ring CH anytime even if I wake up in night I can ring if I want to see how mum is cos she said there's nothing worse than laying there wondering. She said they're there for me as well as mum. When I left I told them mum had settled a bit and wanted to go to sleep so I was going home but if she asked for me or got worse I'd come back.
Mum was bit grumpy with me earlier in the afternoon she said I wasn't good at this cos I didn't understand what she was trying to say cos she was struggling to finish sentences and what she said didn't make sense. She kept getting mixed up with things on tv and asking about them as if happening to us, thinking she was in middle of doing something and needed me to help her finish it but mum couldn't say what it was and I was struggling to follow her train of thought at times. She wasn't grumpy for too long though and a bit later she wanted me to help her move her legs a bit and then she held on to my hand for ages. I held her hand a lot today and stroked her hair and her arm and knees when I helped her move them a few times too which mum said was nice a few times and seemed to find soothing.
Later on when she started feeling more sick again and she was still really restless and uncomfy but wanted me to stay even when she was sleepy, a few times mum said I could go home but when I asked if she wanted me to she said No so I said I'll stay then and mum said Good or Thank you. I didn't want to go while she was unsettled and feeling bad anyway but then she had nap and night carer brought her a cup of tea and mum had bout half a dozen sips and apart from coughing once and burping a bit after a couple of sips and rubbing her tummy a bit she did manage to swallow it and said it was lovely. Then mum wanted to go back to sleep and wanted to know where I was going to go so I asked if she wanted me to go home so she could sleep properly or did she want me to stay and that time Mum said You can go home and come back tomorrow love, I said I can stay if you like and mum said No you go home love, like she usually does so I said I would. She seemed a bit more settled then so I hope she'll sleep and be ok for night.
I nearly broke my rule of not crying in front of mum a couple of times today, seeing her so unsettled and restless was hard and I really struggled to stop myself crying this afternoon when I was standing next to her bed holding mums hand and mum said I don't like being here, I thought she meant in the CH, I asked Why? Mum said I don't like feeling like this. ( I don't think she meant the care home), I said No I know mum it's not fair. Mum said Do you think I wint be long? (I wasn't sure if she was asking about here meaning in CH but I think she meant Here on earth because in past when mum was upset about her alzheimers and being confused and sad she's say I don't want to be here Andie just let me die) I didn't know what to say today when she asked that and it took me a moment to answer, mum just kept looking at me, in the end I just said I don't know mum you might start to feel better. Mum didn't say anything after that for a bit while I held one hand and stroked the other and I tried very hard not to cry which luckily I didn't. I thought mum wasn't aware what was happening to her and just thought she felt poorly but this afternoon I wasn't so sure. I also nearly cried in front of staff again when I was talking to night nurse and carer before leaving about calling me if mum got worse or asked for me.
My sister was still undecided earlier today if to come down or not. She's worried about coming down for few reasons too, leaving her kids although they're young adults now one has autism and she doesn't like to leave them on their own too long, her daughter isn't well with a probable kidney infection and sis would usually help out with looking after her little boy, then she has to organise time off work, travel in what might be dodgy weather, and she's also worried about covid, she doesn't think she has it or been near anyone with it but is worried about if had and took it to home or me. She's also not sure if she can cope with seeing mum as she is now. She had more or less decided she would come down on friday unless mum deteriorated before then but after telling her about mum today she is thinking of coming tomorrow. She still isn't sure if she'll go into CH and see mum or just be here to be nearby and with me and for arrangements afterwards.

 

[Sarasa]

So sorry the news isn't good @annielou, but your mother's care home sound great and I'm glad they are concerned about you as well her. As others have said now is the time to say all the things to your mother that you need to say.
You are doing a marvellous job, {{{@annielou}}}

 

[Starting on a journey]

You are doing so well and the home seem very kind. Take care of yourself

 

[canary]

(((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))

 

[Lone Wolf]

Your love and dedication shines through all your posts annielou. As the night nurse has said, do phone the care home during the night if you are worried about your Mum overnight.

 

[DianeW]

Thinking of you x

 

[annielou]

Thanks @Sarasa @Starting on a journey @canary @Lone Wolf @DianeW xxxxx
My sister has decided to come down today, though she may not go see mum, she still doesn't think she could cope with seeing her now. She called the care home this morning and they said mum had a settled night and has had a few sips of water and swallowed ok. Which was good to hear as half the time yesterday she either spit it out or coughed when she drank. I'm going in about 11 today, mum may wonder why I'm there so early and there so long and may want me to go home earlier but I think if I'm at home I'll be worrying about her and on edge wondering if should go or if I'll get called to go in so I'm going to go in then.

 

[Sarasa]

Hi @annielou. Glad your sister is coming down. You need all the support you can get,. Even if she doesn't go and see mum, she'll be there for you. Your mum probably has lost her sense of time, so will be pleased to see you whenever you turn up.

 

[anxious annie]

Dear @annielou it' s good to hear that your sister is coming to be with you, it helps to have someone who has all those shared memories. I know your hubby is so supportive but it will be comforting to have your sister with you too.

 

[DianeW]

I wonder if you can talk seriously to your sister about her reluctance to see her Mum, of course it’s absolutely got to be her decision and that’s only right.

BUT.....I do think a conversation is needed in that you determine that she really does understand the consequences of not seeing her, and that she is comfortable with her decision and won’t regret it, and feel guilty about it later on.

I have a friend who chose not to see her Mum...very different circumstances as she was not close to her Mum at all...but she bitterly regrets not seeing her even now 20 years later.

I think what I’m trying to say, is please just try to make sure your sister is completely comfortable with her decision, that way she won’t have regrets.

 

[annielou]

Thanks @Sarasa @anxious annie @DianeW xxx
My sister said earlier if she's here she has the choice if she changes her mind and decides to go see mum but I still think she is reluctant to go. We are very different to each other and have different relationships with mum so think and feel quite differently about it so it's hard for me to know how she will be if she does or doesn't go to see mum. I don't want to influence her but I will keep talking to her about it though.
I think mum seemed a bit better today, not quite as unsettled or sicky feeling today but was extremely weak, tired and uncomfortable still though bless her. I went in to CH about 11 and left about 1/2 past 5 today so I didn't stay as late as yesterday, though I went in earlier. Yesterday when mum mentioned me going home and I asked if she wanted me to stay she said she did, till about half seven when she said wanted me to go, but this afternoon when mum was talking about me going home and I said I could stay she said I could go home like she did about that time most other days. So I did come home, not sure if I should but mum kept mentioning it and seemed quite settled and was ready for another a sleep so I decided to come away.

 

[canary]

I think that being guided by what your mum wants is the way to go about it
You seem to know instinctively the best things to do for your mum, I am constantly amazed by the way you interact with her
xxx

 

[annielou]

Thanks @canary x
I try to go with how mum feels, it's not always easy though and I often worry I've got it wrong but then I am a worrier. When mum isn't feeling well she used to like to be on her own and then would ring me for a chat or to come round when she got a bit bored and then ask me if I minded going when she started getting tired so I've been trying to work on that idea a bit and when mum has been talking about me going home I've asked if she's tired and wants me to go so she can have a better sleep and going when she says yes.

 

[canary]

No, its not always easy but trust your instincts
xx

 

[annielou]

No, its not always easy but trust your instincts
xx

?

 

[annielou]

Due to covid and lockdown the CH are having to shorten my visits now. When I rang to let home know time I was thinking of going in today manager said she was going to ring me because unfortunately due to new lockdown they will have to restrict my visits to 45 minutes now. Manager was very sorry and said if mum deteriorates they will do their best to accomodate me and change visiting times but she's not at that stage yet. I understand they have to work to new guidelines and rules and it's not their fault but I'm still sad. Manager said been reading all the emails they'd had this morning about what new policies would have to be for visiting and was sorry I can't just go in now for as long as I want.
I'm glad mum hasn't deteriorated further, I thought over the weekend she had deteriorated more and I was worried she was getting close to the end but yesterday she seemed to have settled a bit and was a little bit better than she had been sunday and as they're only allowing me 45 minutes and manager said mum isn't there yet that's a good thing really but I am sad I won't get to see her as much now. I think mum has got used to me being there for a few hours and today I'll have to say I'm going after 45 minutes and she might not understand why.
Also mum'll be on her own a lot of the time now, I know she has been when I've not been there but for a few hours if she's wanted helped rolling over, lifting her legs or wanted someone to rub her knees or back when they're aching or pass her a drink and put her lipsyl on then I've been there to do it at least for a few hours a day but now I won't be. I know the CH staff pop in her room a lot but mum tends to tell them she's ok and doesn't want anything when they ask and she doesn't ask them to help her move about etc. I'm also worried there is more chance when mum does deteriorate it will be when I'm not there with her and CH will have to call me and I'll have to rush to get there rather than being there already.
I'm going in this afternoon for my 3/4 an hour. I'm feeling really sad I can't go see her for longer and I worry about her more when I'm not with her.

 

[Helly68]

@annielou - I am so sorry to read all this, I lost my Mum earlier this year, and this time is so hard. I am sure your Mum takes strength from your being there, though it is tough that they have to shorten the visits. I tried to remember my Mum in happier times, when I visited her and we went out or did something together. I am glad the staff are good, they were brilliant at my Mum's home. I wish you strength and I think you should do what you feel best, and let your sister make her own decision.

 

[Sarasa]

I'm sorry about that @annielou, but understand where the home is coming from. At least you are still allowed in to see her. I hope that when you are not there the staff are popping in to keep her company, but I guess your mum won't really have much of a sense of time, so hopefully won't feel too alone.