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

[annielou]

Thanks @Bikerbeth @Woohoo xx
Aw bless your mum @Bikerbeth that would be lovely if she were able wouldn't it. X I've made a few clothes over the years, though very amateurish, but I often despair of how poorly things are made and designed now. I bet your mum does miss sewing and knitting when she remembers it. Sewing is one of my favourite things to do but I don't get chance now, Mum moans when I tried it so much I gave up. I do knit at mums a bit now as she did stop moaning at me for that and its encouraged her to do some again, mainly scarves we dont need but its something to help pass the time.

Glad to hear your mums huff and puff mood didn't last all day @Woohoo X
I end up sitting a lot with mum too and it gets me down. I have rheumatoid arthritis in my knees hips and shoulder which luckily for me isn't bad, but the constant sitting about does aggravate it a bit. When we are at mine I can recline which lifts my knees and hips out a bit which is comfier than way I sit on mums sofa and I do get up and down a bit more as I'm usually doing washing and other bits, but not much as mum gets fed up and upset about being on her own.
When we're at mums I rarely move from sofa. Funny thing is I used to work from home and was a self employed crafter which did require me sitting a lot and mum used to say 'you sit too much Andie you'll make it worse' but now doesn't remember that.
It wasn't as bad then either as I used to keep getting up to fetch things, cut things out etc or doing little jobs round house and if I'd been sat for a while I would get up for a little walk round.
Most of my time with mum is spent sat down watching tv and answering same conversations, I think being stuck sat about not being able to do what you want to do and need to do is really hard isn't it.

 

[Woo2]

I’m sorry you have ra , my dad has that , he used to have to get up and move about every half hour or so or he would seize up he said , he also told me fruit was good for it, well grapes and sloe’s specifically and would drink red wine or Gin most days . I’m glad yours isn’t too bad . It’s very hard sitting around , conversation is extremely difficult a lot of the time . Mum also knitted and crocheted but when I have given her the bits she gets stressed so I have hidden it all away now . Hope today is ok for you . Xx

 

[Bikerbeth]

I guess the RA is another reason @annielou you must be glad to not have to sleep at your Mum’s.
I have a few slipped discs which is manageable providing I move often so I understand where you are
coming from.
@Woohoo I like your Dad’s logic for helping arthritis’s
I agree with both of you that conversation is hard going.
One funny thing about sewing, knitting and crochet. Mum is left handed and I am right handed so I sew ‘backwards’, mum could never teach me to knit and I could never teach Mum how to crochet which I learnt at college
Wishing you both an unstressful week ahead and a bit of space whilst Mum’s are at day care.

 

[annielou]

Ooh I didn't know that @Woohoo X Funnily enough I bought a berry fruit pot which had lots of grapes in it this weekend and a box of grapes.
Mum used to knit lots of baby blankets for charity but last year she kept pulling them out as she kept going wrong with the pattern and eventually she gave up all together. I started knitting a scarf in the hope of encouraging her to try something simpler and surprisingly eventually she did. Its just a simple k2 p2 pattern and she does go wrong at times and asks me to sort it out but she's knitting number 3 now. She mainly only does it if me or my sister is too and not for long, but it's lovely to see her doing it again. She used to spend lots of time knitting, doing puzzles and reading but really struggles with them all now which is such a shame. Its hard to see them losing the ability and confidence to do things they used to enjoy isn't it

@Bikerbeth yep sleeping on the fold up bed really didn't do my hips any favours and I rolled out of bed a few times as I had to turn over a lot and the bed wasn't really wide enough to do it in one go lol
Sorry about your slipped discs, that can't be fun X
I've always wanted to crochet. My niece used to come and stay when she was young and on one visit she had learned a basic crochet stitch off her step mum which she showed me. I bought a load of chunky chenille wool and some fat crochet hooks and we spent most of the week crocheting things with just this one stitch. We made very holey ponchos and shawls and cushion covers lol. My niece went on to learn more stitches and how to do it on smaller hooks but I never did, in fact can't even remember how to do that stitch now

Today has been quite a good day, hubby and I took mum to look at paint and get a new blind for her living room and also popped into another shop on same retail park where we got my great nephews some birthday presents and all 3 of us bought a few new clothes too. Then we came back to ours until this evening. We watched a couple of episodes of Phil spencers stately home which mum enjoyed, especially the first one as it was Chatsworth house. Mum didn't think she'd been but thought our Andie had. I had pics on my facebook from when hubby, mum and I went in 2010 and when I showed her she said 'oh yes I did go I'll be able to tell our Andie I did now'.
Mainly though she knew I was me for quite a lot of the time today. She did get mixed up a few times and she did get mixed up with where lived, if she had to let council know she's in her house now etc around dinnertime but overall she seemed to have had a really good day and said she had really enjoyed herself.
She asked me to ring her when I got home from dropping her off tonight and for the first time in ages she didn't ask me where I'd been, or say she'd been at 'friends', she knew she had been with me today instead which made a nice change.
Hope you've both had good days xx

 

[Starting on a journey]

Have you thought of doing decopatch with mum? You simply tear the paper into small pieces and stick it on a pre formed object with glue. The results are quite impressive and you don’t have to be an expert at cutting or gluing.

 

[Sarasa]

Hope today is a good day too @annielou, and you get mum to Day Care on Wednesday.
I stand in awe at your patience with your mum, I'd have walked away from the whole situation long since.

 

[annielou]

Thanks @Starting on a journey @Sarasa xx
Today I have been feeling rather down and in a fed up mood, I don't really know why I've felt so down today as yesterday was actually a good day for mum, hubby and I both said it was a much nicer day than we've had for a while. Today wasn't even that bad a day as days go but I was just fed up.
I think it started because I felt like I might have got a bit of a cold coming on this morning and was thinking I hope not as I have to go see mum everyday and haven't time for a cold or feeling off it. Then I started thinking about all the things I haven't time for besides taking things a bit easy when I'm feeling off it, like doing nice things such as going out, reading a book, keeping in touch with friends, or even just keeping up with my housework and I got a bit fed up and I admit I felt a bit sorry for myself.
When I got to mums she was changing her bed but was struggling with her quilt cover so asked me to do it. She'd stripped bed and put bedding in wash and then she was a bit stuck on what happened next, I asked if she wanted me to help but she said no thanks. There were a few mix ups where she was trying do things wrong way round, misplaced things, or got mixed up so I kept answering her questions and prompting her the next step and offering to help. At one point she got annoyed at me and waved her hands in my face telling me to stop nagging her. I said OK mum there's no need to shout at me I was only answering you and offering to help. So I sat down after that and left her to it.
She came in after making bed up and started saying how hot she was and said she'd dust and hoover bedroom later and she sat down for a while to cool off. I offered to finish bedroom but she said she'd do it soon. Then she started going on about whether to put washing on the line or not, after 10th time of giving same answer I was more fed up so on the 11th time I just said 'you decide mum!' She stomped off and went outside to wipe washing line then came back saying it was cold and she'd put them inside.
She sat back down and started asking if I wanted a cup of tea so I offered to make it and she let me. She asked me a few things but they weren't things I could give much answer to and then she said 'I'm sorry Andie' I said what for? and she said for shouting at you. I told her it didn't matter and she said but you're not talking to me. I said I was talking to her it was just I didn't have much to say, I was bit fed up today and was being bit grumpy but it wasn't her fault.
She started asking did I want to go out anywhere, did I want to do anything? I said if she liked and asked what she wanted to do and she said she didn't know. Mum usually wants me to think of where to go and what to do but I couldn't today.
She put tele on while we had our tea and quite a while later when I took cups in kitchen on way to loo I noticed hoover still in bedroom so asked her if she wanted me to finish bedroom for her as not dusted and hoovered yet and she said yes and went to bring me the polish and duster which she couldn't find and at first neither could I as she had put dusters in totally different place. While I was finishing bedroom mum started sorting some socks and when I'd finished in bedroom I carried on into hall and kitchen with hoover and then into living room as mum used to do them together and they hadn't been done for a week and half. She didn't say anything about it till I started hoovering one of the sofas and then she said I do do those you know and so I said I know thats why I'm doing them cos I know you usually do them at same time, which she seemed happy with so I carried on doing rest of room.
She took socks away and then started polishing bedroom so I told her I'd just done it and she asked me why. I said I asked if you wanted me to finish bedroom and you said yes, she said well i didn't know you'd done it I thought you were doing room. I said I'd dusted bedroom then hoovered it and I'd carried on hoovering through, but I'd not dusted room yet. Mum took duster and polish back and put it away in yet another different place to usual. I said do you want me to dust room cos I've not done it yet but she said no it doesn't need it. It did but I decided she wasn't in mood to hear it so I left it.
I tried to make a bit more effort to chat when we went back in room to watch tv but then after I saw an ad for a cooked breakfast and said I could just eat one we had a ten minute to and fro over whether to walk down to tesco to see if they had them in cafe at lunchtime. In the end it started to rain so we didn't go and made usual sandwiches for lunch. I think mum could sense I was fed up and kept asking if I wanted to do something or go somewhere but not coming up with anywhere or anything herself and also kept saying but it looks windy, or it was cold but the suns out now, but then saying I bet its still cold though. So we didn't go out we stayed in and watched tv instead and I tried to chat more and cheer up but I didn't really cheer up and although I did chat I was quieter than normal.
We had the usual questions this afternoon about had she lived here a long time, did she pay bills, get her pension etc but not too many compared to other days. She also mixed me up a few times with friend and asked if she had been with me yesterday and was asking where I lived, if she'd been to it and who my hubby was a few times too, but again today like yesterday I was mainly me which is a nice change.
Hubby wasn't hubby today though, when I was in kitchen with mum about 7 and she offered us a cup of tea and I said no thanks as I was going home soon cos I had stuff to do when I got in. Mum asked where I was going and then asked if he lived with me now, meaning hubby. She thought he was 'friends' hubby and was asking how long we'd been together and if I'd been with other hubby first. When I explained she looked quite confused and I thought oh heck she's not going to know who we are when we leave now and I don't want her to get mixed up when she's on her own so I thought I better stay a bit longer.
She made herself a cup of tea and we went back in to living room and we were all laughing at what was on tv. While we were watching she called me Andie and hubby by his name and she seemed more settled so after about 20 minutes I decided to come home. She asked if I was coming tomorrow and what time, thanked us for putting her new blind up and waved us off ok.
It wasn't really a bad day today, not as good as yesterday, but not bad really on mums part so I feel guilty about not being brighter and more entertaining with her today, but sometimes I find it hard to make so much effort to keep things happy for her and entertain her and I get in a 'what about me' self pity mood like today which is not good.
Here's hoping I'll be in a better mood tomorrow ? or somebody will have to slap me ✋

 

[Woo2]

Morning @annielou , I can understand and relate to everything you said and how you feel . It does make you feel that way , my daughter said she misses it being the just 4 of us , but felt guilty saying it , We also eat what Mum likes not what we would eat ordinarily , so many things we change and adapt , it’s only normal to feel fed up , I get wound up , frustrated etc. I never make plans for day centre days off either as like yesterday she slept through , tried to wake her up but to not avail so didn’t get my day off, how comes mum gets up at 7am on a weekend when I want to lie in a little but weekdays when I’m up at 6am she lies in until 9.30am ! We need a break occasionally it’s not too much to ask and I think it does our PWD good to see and chat with others . We have had the cough and cold then it went almost and returned last week but feel much better now , I hope nothing comes of it as it will be harder for you having to go to mums when you just need to rest . hope you feel a bit better today . Sending big hugs . Xxxx

 

[Woo2]

Meant to say, mum couldn’t complete the whole polish and hoover sequence , I noticed when dad was in hospital and mum taking his clothes home to wash they smelt the same so she was obviously putting them in the machine but forgetting the washing powder . She had hung dirty washing on the line too. The other thing about her not going day centre is it’s harder to get in her room and look for dirty washing as it’s hidden in different places . X

 

[annielou]

Thanks @Woohoo x it is hard to not be able to make choices and never do what you want to do. Putting mum first means everybody else takes a back seat which is hard and creates more guilty feelings. Like your daughter missing times just with you 4 bless her. I know mum can't help it and would probably do the same for me if able so I feel guilty for thinking and saying it but it does get too much at times doesn't it.
Sorry you didn't get your time off yesterday @Woohoo and sorry your mum didn't get her day at day centre either. It feels such a let down for both of you doesn't it. x I hope she goes on her other day this week, for both of you ? I hope you manage to sneak in for her washing too, its like being secret agents at times isn't it.
I really want to switch mums towels over as she's not done them for a while but said she had when I slipped it into conversation yesterday. I'm thinking of doing it sneakily but that's quite hard as she tends to follow me places and when she doesn't she can see where I'm going from where she sits in room. Its only a small bungalow and you can see down hallway which has bathroom and airing cupboard where clean towels are kept on one side, bedroom where wash basket is kept on other and kitchen at bottom so she'd see me getting clean out and putting other in basket and ask what I was doing. I should be able to swap kitchen one if I'm quick while she's in the loo but I'll need to put my thinking cap on for bathroom ones.?
Memory nurse who came to do mums test and speak to us about her symptoms originally and then OT that came out to watch mum cook both said mum had quite a lot of trouble with sequencing, which she does. A few years ago she used to go stay at my sister for a couple of weeks and while sis was at work mum would clean sis's house or do ironing and things for her. Mum liked to clean and always thought sis didn't do enough of it and it gave her something to do while sis was out. The last year she was going (2017) sis was jokingly calling her half a job bob as she would starts something and then go off and do something else leaving the original job with part of it not done. At the time must just used to say she'd got fed up or stopped for lunch and then got busy doing something else and we didn't think much about it at the time. It was late 2017 we started noticing mum having memory problems but I only recently thought back to 'half a job bob' and thought that might have been a symptom then too.
Nowadays she rarely does all of a job, if she dusts she always leaves something undone, she struggles everytime she does bedroom and bathroom, redoing some things but not doing others and not being able to remember what comes next. When she's washing up she rarely remembers to wipe down and sometimes forgets to rinse them which was her pet hate. I often find piles of clothes waiting to go in washer but not put in, or wet ones on the side she took out but didn't get round to putting on airer. The other day she was pairing socks she'd just got out of the washer not realising they were wet and not dried yet, she has hung clothes up she found on bed because she got them out of wash basket to wash but forgot when she went back in and thought they wanted putting away, got clothes out to iron and put them in washer again instead lots of things like that. Its hard trying to keep track of what she has done and trying to keep things flowing right.
Hugs (XX) back and hope we both have a good day today and hope both our mum goes to day centre later in week ?

 

[Woo2]

Can you just say you dropped it on floor or in sink and it’s wet ? I have become such a good fibber . Hubby wants to go out for a meal occasionally but it’s really too much for mum, I think he means on our own but it’s almost impossible. I shouldn’t complain as mum would do it for me but I’m sure and I have told my daughters that they are not to do the same for me , I have done an Lpa already and in process of doing and advance directive . I feel horrible even admitting that I miss work , but I do , it doesn’t mean I would change anything but I do really miss it, plus wanting my old life back would mean my darling dad would still be with us . We mustn’t beat ourselves up as our feelings are important, though we can and would do nothing different . Mum has a couple of cold sores appeared so I won’t send her this week, not fair to potentially spread germs to others who have other medical conditions . She is awake bit hasn’t come out her room so that can only mean she is pulling out clothes or sorting out her jewellery . Idle hands create havoc here . Have a good day too. Take care .
Ps we are the same age ?. I am 48 in June . Feel about 78 sometimes . Xxx

 

[annielou]

Really well put @Woohoo that's how I feel X
Shame about your mums cold sores I hope they go soon X
My birthday is early July so very close to you.
When I first started with RA at 27 if I was slow getting up or down or struggling with stairs people used to say I was too young to have arthritis and I used to joke I'd been given the body of a 96 year old by accident. These past few months I think I look and feel like I'm 96 ??
Brilliant idea about towel too. Rail is over radiator and it actually does sometimes slips off down the back? Thank you x

 

[Woo2]

Sounds painful , a lot of people don’t seem to understand how painful and debilitating arthritis can be . I do tend to avoid a lot of tomatoes. Mum has just surfaced ? she sleeps so much now , another manifestation of this god awful disease . I bought the selfish pigs book the other week, I haven’t got very far in to it but it seems really good . Hope today is reasonable for you all. X

 

[charliejack]

Hi hope you all don't mind me joining in, I have spent a few days reading the whole thread and I have to say you do so much for your mom she is so lucky to have you. I wish I could have the same sort of relationship with my mom but it goes way back to my childhood. She is struggling with feeling alone and it's hard for me to want to go to see her but I do pop in when I can . I have an older brother who goes in most evenings and she is still able to cook for him.
Just to add I am 48 in July also ?

 

[Bikerbeth]

@annielou and @Woohoo please do remember you are only human and not super women. You are both doing fantastically and your caring and love for your respective Mum’s come through in your posts. However you are allowed days to feel fed up sometimes. I could not do what with of you are doing.
Re: the towels -could you say you are just going to pop them in the washing machine to ‘make up the load’
Hope you have had a better day today

 

[Woo2]

Thank you @Bikerbeth . ☺ x

 

[annielou]

Thank you @Bikerbeth x You are doing fantastic job too x
@Woohoo the towel trick worked a treat ? Thank you x I went in part way through day and made a joke about stiffening up while I was sat and did a silly walk so mum was laughing as I popped into loo. I went in got the towel waited for a moment then popped back out and went to get a clean one out of airing cupboard and put old one in wash basket in bedroom saying 'just getting a new towel mum cos this one had dropped behind radiator' mum just said ok love. RESULT ?
Sorry your mum sleeps so much x That is another sad part of this crappy disease of which there are so many aren't there x
Mums not really doing that yet, she does drift off for a few minutes sometimes but I've noticed she doesn't seem to be doing it as much or for as long these last few weeks as she did before. I don't know if she still naps on an evening like she often did when I was staying there though. I wonder if its the Sertraline she is taking as when I think about it her not nodding off as much in day seems to have coincided with her dose increasing.
It's good she's not nodding off lots in day now but I do worry if she is sleeping ok at night as she sometimes says she hasn't had much sleep. It does say in leaflet it can disturb sleep a bit and if it does, it suggests taking it in a morning, which mum does so it might not be that making her not sleep at night. Mum has been a poor sleeper at night for years anyway, she used to buy nytol tablets regularly. And sometimes when I was staying at mums she'd get up and say she'd not been asleep for hours but I had heard her snoring until not long before she got up so I knew she had been, it probably just felt like hours to mum, so she may actually be sleeping fine even when she thinks she hasn't. Its hard to know and I do think she is much calmer, less anxious and less agitated on the sertraline so unless she starts to really struggle with it I think it's more benefit to her to keep taking it.

Hi @charliejack don't mind you joining in at all x Welcome to the 48 this year club lol
Thank you x, Mum and I have always been close although we have also argued quite a bit and it's been quite stressful at times, but we have always spent lots of time together and most of it has been good. We've both always known we love each other and are loved back and been there for each other. It must be hard dealing with dementia in a parent when your relationship hasn't been as good or close in the past and it must be hard to find ways within your relationship to help. It sounds like you are doing what you can and I think thats all anyone can expect really, everybodys situations are different
If my dad was still alive and he had dementia I don't know how or if I would be able to help as we weren't ever really close and he had basically ignored me for a lot of years before he died so we'd had no relationship. It was odd finding out he had died after not seeing him for years. I was sad that he had died and we'd not had chance to be close or have any sort of father daughter relationship for a long time and also angry at him for just drifting off out of my life because it was hard for him to be in it. He was always one for taking the easy way out.
My aunts and uncles offered to arrange his funeral as they knew he hadn't been in touch with us for years but my sister, who'd had a better relationship with him, although he had ignored her for quite a few years too, said she would do it and I said I would too. Sis was quite surprised but he was still my dad and my responsibility too I felt . So we arranged it together and also paid for half of it between us as he had no insurance and only had enough money in the bank to pay for half of it. I know if the roles were reversed my dad wouldn't have done the same for us but it didn't stop us doing it for him, but I really don't think I could have ever done the same amount of caring for him as I do for mum even if he'd have let me.
Sorry for the long ramble but what I'm trying to say is every relationship is different and has a history that does affect what we can do for them.
X

 

[annielou]

Today hasn't been too bad and I've been in a better mood too. I've been me most of day again but hubby has been the one mum's confused again today She has been mixed up over the usual things but not gone on with the questioning too much today.
She said she had washed her hair this morning to save time tomorrow as she's to be up early for day centre and seemed quite happy to go back but then later this afternoon she said I wish I didn't have to go to work tomorrow. I said you don't go to work now mum. She said no I mean the thing I go to, she meant the day centre, I asked her why and she didn't really seem to have a reason other than she hadn't been last week. I reminded her she had only missed a week and she enjoyed it and then mum said they might not send bus for me cos I didnt go. I said they will I had to ring them to say not going last week and she said hope to see you back next week.
Mum mentioned a few times wanting a little alarm clock and said she didnt get much sleep when going before cos she kept thinking she might oversleep. I told her we'd get one at the weekend but not to worry as I would ring her at 7 to get up and come through in morning like before. I'm hoping she does sleep ok and does go tomorrow but am a bit worried ?
Sis had call from care agency today and someones coming out on Monday to speak to mum and me and is hoping to start carer visits next Thursday. They have someone to do Tuesday and someone else to do Thursday, I was hoping it would be same person for both days but sis thinks maybe they will be able to cover for each other if one is off if there are two of them. We just hope mum gets on with both of them. ?

 

[Woo2]

Oh I’m so glad the towel trick worked,
You made it fait accompli by making mum laugh first ? you are getting good at this trickery like me , we are learning on the job fast . That’s so sad about your dad ,how on earth they can do that I don’t know but hey you have confirmed what we know just how lovely you are to help arrange and pay for his funeral after his treatment of you makes you a much better person .
mum on sertraline too for about 6 months now , she is less agitated definitely , don’t think it has made any difference to her sleep pattern , she has always slept well and was always an early riser. Dementia is the gift that just keeps on giving isn’t it. Take care . Xx

hi @charliejack, welcome to the goodbye 47 club.

 

[Bikerbeth]

don't mind you joining in at all x Welcome to the 48 this year club lol

Please can I be an honoury member of the ‘48 this year club’ because unfortunately I have been there, seen that and got the t shirt as they say