Worried about mums Memory clinic results appointment tomorrow

[annielou]

Thanks @Grannie G I will look at them both x

Mum had her folder out and was looking in it again this morning. Each thing she picked out to read she asked 'when did I get this?' There are about a dozen things in the folder so thats a dozen questions and a dozen answers from me of 'On monday at the memory clinic' and then about a 50/50 split of either 'Did I go?' or 'oh I think I remember that'. I'm not sure if leaving it out is a good or bad thing.
I thought maybe if she kept noticing it eventually little bits would start to sneak in and it may help with her coming round to idea of having outside help.
But she also says she can't understand a lot of it, can't remember reading it and that upsets her. I think maybe all the talking about it yesterday made her confusion and worry worse.
Mum does keep asking about her memory and care and related things a lot though anyway and so is upset about it often. Its very hard because I know that most of what we talk about doesn't go in and stay there and mum struggles making sense of it. I feel like most of the time there's no point talking about it as I know we won't get anywhere or come to agreement on what to do, but once on the subject mum won't stop until she has had enough and then that's it no more talking about things. Things are left unresolved and we're both upset.
I also struggle with this because I have always been a logical, talk things out until agree a solution type person, and also a very logical arguer with lots of examples in my arguments which has driven my family, and some customers who used to try it on where I used to work, mad for years as I do not give up. Most of my family are the shout and complain then leave it and just hope doesn't happen again, or leave me alone I'm annoyed and won't talk to you till I decide you've suffered enough type of arguers, so we don't mix well that way.
My way is no good with mum now I know and I am usually willing to stop and usually notice when I slip into that mode quite quickly now and stop myself, but it is very frustrating as once mum starts on a subject she won't leave it for ages and goes round and round not understanding it.
Decisions need to be made, but how do we do that when I have no say over what mum does, she has to make her own mind up and yet doesn't understand the problems, or the options and also changes her mind constantly. I feel like its impossible

 

[TNJJ]

Today has been very up and down. Mum has flicked through leaflets in folder from memory clinic a few times today. Each time asked when she got it and if I'd read it and said she couldn't remember going to memory centre.
She's been talking bout how she doesnt feel like she is that bad and feels like it's only been recently and asking if its different to that and how. I told her itsvbeen comin on for long while. She did know it started before but I think it was easier for her ignore it then and blame other things but she knew cos she told me not tell them at drs when went for health check early last year and wouldn't gobto drs for uti for couple of months until Christmas eve in case they spotted problems with her memory. But its more often and worse now so its harder to ignore and pretend not happening.
She was quite upset about it this morning but we ended conversation ok with talk of trying to accept help.
Rest of morning went ok, mum did some ironing and let me clean bathroom without any fuss, which is very rare and we had a few laughs but then during lunch she said she was bored and as usual wanted me to fix it. In end we decided to walk to local aldi which is only ten minutes walk away. Mum wanted to go shops further away but she cant manage it that far now so I held firm at just going aldi and I'm glad I did as she got confused a few times in shop and by time we came out which was only about twenty minutes later she looked quite vacant and tired. We'd bumped into two neighbours on the way and I don't know if that wore her out more or just the shop.
As we crossed road from car park mum was wobbly and walkin funny and nearly fell off causey edge into road so I held her arm to steady her and stop her goin over sideways. I asked if she was ok and she said yeah, but she was still wobbly so I held her arm across main road but she pulled it away when we got across. I asked her if she wanted a minute before carried on home but she said no she didnt like being fussed. We made it home to mums but she was still walking funny and said its her toenails.
They are extremely long as she hasn't cut them for months. They are really hard and curled round as she has ingrown nails and she has been saying they hurt lately. I remind her every morning to cut them but she says will do them tonight, i remind her at night says too late dark tired and will do them in morning. So i told her while we were out today she needs to cut them and I'm not going out with her again till she does cos she cant walk properly and I'm worried she'll hurt herself.
After we'd been back a while she had another look at folder from memory clinic and we had similar discussion to this morning about how long and how bad etc. We Talked about actually needing to do something rather than just talking about it and leaving it and hoping memory will get better or someone will come along and sort it for her and make things better.
She's also been confused again about who I am, how long I've been here, whether I see hubby and few other things so it was quite an upsetting afternoon.
Once We'd calmed down again she agreed to try cutting her nails but when tried she couldn't see them properly in late afternoon so has had tonleave them till tomorrow.
We were ok for a few hours, mum and i watched tv and chatted and I even did a bit of knitting without her moaning at me ignoring her and hubby came for tea so we all chatted then too. After he left mum nodded on n off and then not long after 9 said was going to bed. She wasnt too long getting in bed doing her checks and I decided I'd make my bed up and look online for a bit.
She got up while I was making my bed up and asked where my sister was then asked if we had an Andrea I said thats me. She said oh yes you're lovely. I love you Andrea so i told her loved her too, hugged her and she went off to bed She came back again 10 mins later asked where sis was again and said she thought she had been staying here, then when I told was just me she said I was a good girl and went back to bed again.
Bout twenty minutes after that I could hear her rustling and moving round for a few minutes so I went to look if ok. She was sat on bed with her purse and handbag. Said she was wondering where her purse was and hadn't been asleep yet. She got up to put her bag back and gave me a hug, she seemed a bit teary. I told her i loved her and tried jolly her, joking about going sleep on sofa and then waking up when get bed and she seemed cheer up and went for a wee, then said night and went back to bed and I went back to mine.
But a minute later I heard her crying so went in to her, sat with her and gave her a hug. She said she was scared and doesn't know who she is. I said she's my mum and she said she int one cos she dunt do owt, she useless. I told I don't need her to do owt just love me which she does, she told me she does loves me and I'm a lovely girl but shes scared cos she forgets things and she didn't want hubby to think she's stupid cos she forgets everything. I said hubby didn't think that and its not her fault she forgets things. She said hubby is lovely and that she hadn't seen him for ages. I didnt bother to correct her just hugged her ad tried to reassure her we loved her until she said she'd try going to sleep.She got in bed but was still sniffling a bit for few minutes.
I feel so useless when she's upset and scared. I think maybe all the talk about memory and getting help and her needing to do something to help her live with it rather than hoping will just get better or someone would come along and fix things may have made her worse tonight.

Hi.Could you not get a podiatrist in?You can mobile ones to the house and pay out of your Attendance Allowance.. Don’t forget to claim for the higher rate as she needs help at night.
Tbh this is not sustainable and you are worn out.
There comes a time when their needs have to come before their wants.
I think I have made quite a few mistakes with dad thinking about what I had promised (to stay at home) but that was the old dad..This is the “new” dad and he has different needs than previously.Sometimes I have to step outside the box to “see” if you know what I mean.
Please take care of yourself and Keep posting.

 

[Pete1]

Hi @annielou, do you have Power Of Attorney for Mum (sorry I couldn't remember)? I had the same approach as you, trying to reason in a sensible way - unfortunately it no longer worked. The way @TNJJ has expressed it is sadly accurate 'old' Mum and 'new' Mum with different needs and judgement.

 

[Casbow]

Mum has her appointment at memory clinic tomorrow and I'm hoping this is when we get a diagnosis, but what else happens?
We went to gp originally who asked a few questions about symptoms, asked mum few questions to test memory, took blood tests and refered us to memory clinic. Memory clinic sent a nurse out who talked to mum and me about symptoms, gave mum a memory test while I was in other room filling in a questionaire. Then we went to hospital for ct scan. Tomorrow we go to memory clinic for appointment. But what happens?
Do they just tell mum what test they did with mum and ct scan results show, do they ask more questions, do they want history again, do they ask if things have changed?
We got the appointment letter weeks ago and feel a bit like we've been counting down to it coming but its been ages away and now its I feel a bit unprepared as I'm not sure what to expect.
Maybe I should have re read the notes I made about mums symptoms before memory nurse came and made some more about things that have happened since. I find when asked about it I tend to forget how long its been since some of the things started and always seem to think of things I think I should have mentioned afterwards.
Also are there questions I should be asking tomorrow?
So nervous now about what they will say, whether I say and do right thing when there, how mum will be and cope with it.

My husband was diagnosed in 2008 but after the scan results came we had an appointment at the memory clinic and were told the results. Your instinct is as good as a scan result i think. Hope all goes ok.

 

[annielou]

Thanks @Pete1 @TNJJ @Casbow xxx

Omg @Pete1 feet i am freaked out by feet, silly I know but I have two weird phobias, one is feet, the other is hearing breathing.
I can barely look at mums feet and nails without gipping, I don't think I could touch them to cut her nails. I can only just about manage to cut my own. I've never liked feet and hate anyone touching mine and mums always been the same too and had always resisted going to chiropodist even though struggled with thick ingrown nails for years, but I think she is going to need one now. She had another go cutting them this morning and couldn't cut them. So another thing on my list to look up and try arrange.
We dont have POA and SW said when she came that she thought too late now, but then again she put mum was assesed as mentally capable on care plan, so if she is capable for that then surely would be for giving consent for POA. But sis and hubby and I don't think she would agree to anyone having one anyway, so maybe thats what SW meant when she said too late for one now.
Yes I need to think differently and try arrange and get mum to try things rather than trying to get her to agree first. It is hard though as if mum doesnt want to do something or talk to someone she will kick off and refuse and most times I can't persuade her otherwise. Although I have access to her bank account, as we draw her money out and pay her bills for her when required, legally I have no right to spend her money on carers/day care etc so it does worry me to go ahead and arrange things that she needs pay for.
She has agreed to us applying for her attendance allowance though so if she gets any of that it would probably be a bit easier to persuade her to pay for day care.
We had another chat this lunchtime where she wanted to know about leaflets and what help there was for her, which turned into her saying I was wanting someone else to do it because I wanted to abandon her
She calmed down eventually and I stopped blubbing just as the memory nurse rang to arrange mums prescription which set off questions again but at least this time was in a more positive mood.
She's just been asking me where Andrea is again, she says this morning I didn't look like Andrea even though I said I was. She is struggling to remember who I am more and more now. She said she knows I'm someone important who loves her and who she loves but sometimes cant think who I am and doesn't think I'm Andrea. She can't understand how that can happen bless her

 

[Pete1]

Hi @annielou, perhaps the feet are a job for your sister I do no what you mean, it wasn't a job I relished I can assure you!!

You Mum may be remembering you from another time, perhaps when you were a child or teenager which in that moment is how she visualizes you. Mum sometimes thought I was still a child or sometimes she thought I was my (deceased) Dad - this was normally when she had a UTI, so it is always worth checking for that if there is added confusion, I came to recognize the signs straightaway and I was normally right. You could try introducing yourself to Mum so she doesn't have to struggle in her mind when she sees you 'Morning Mum, I'm Andrea your daughter' or something that works for you....it did help my Mum, although sometimes she would retort 'I know who you are'.

 

[Sarasa]

Sorry things are so tough @annielou. If you think you could manage it getting your mum to agree to POA would be a great help on the next few months, but as you said it might be too late. I'd get a chiropodist in, mum had one that visited as does the home she is now in. It sounds like she needs more than a quick foot soak and nail cut.
I think, much as you want to support your mum with what she thinks she wants, now is the time to go back to the SW and get the month's respite sorted. As others have said there is a time when your mum's needs trump her wants. While your mum is safe in care, you will have time to think clearly about the way forward with her care. In the mean time don't forget to take care of you.

 

[annielou]

I feel like I have just done an I'm a celebrity bushtucker trial. I have just touched mums FEET
And cut a bit off her big toe nails. I really don't know how I managed it without throwing up, but somehow I did.
Mum was trying again this afternoon to soak and cut her nails and was really struggling as the big toe nails have both grown round into tubes and are really hard and thick. Mum hasn't got great eyesight and was getting nowhere and couldn't make out what part was what so I took a couple of photos in my phone to show her and then after she tried again and failed to cut any of them I gave in and faced my fears and had a go.
Oh my it was yucky and stomach churning and very hard to do as I couldn't get around the nail properly so it was a case of chipping bits off at a time and digging bits out of the middle, ooh I'm going queasy again typing about it now,
She still needs a professional to look at them as they are still long and grown round into tubes but now a bit shorter so won't dig in her shoes as much which might help her walking.
I'm currently sucking a rescue remedy lozenge to recover. Just wanted to share I did have a go

 

[annielou]

Hi @annielou, perhaps the feet are a job for your sister I do no what you mean, it wasn't a job I relished I can assure you!!

You Mum may be remembering you from another time, perhaps when you were a child or teenager which in that moment is how she visualizes you. Mum sometimes thought I was still a child or sometimes she thought I was my (deceased) Dad - this was normally when she had a UTI, so it is always worth checking for that if there is added confusion, I came to recognize the signs straightaway and I was normally right. You could try introducing yourself to Mum so she doesn't have to struggle in her mind when she sees you 'Morning Mum, I'm Andrea your daughter' or something that works for you....it did help my Mum, although sometimes she would retort 'I know who you are'.

Yes I suppose she could be thinking of me when younger. Must look really old to her in that case. But yes I think it probably is that.
She also calls me mam sometimes and also mixes me up with my sister. Quite often she thinks her mum is still alive and staying here, but she died 45 years ago, I was almost 2 at the time so her time frames are really mixed up at times.

 

[Bunpoots]

Well done on cutting the toenails! I had to get the mobile foot clinic out to deal with dad’s

 

[annielou]

Sorry things are so tough @annielou. If you think you could manage it getting your mum to agree to POA would be a great help on the next few months, but as you said it might be too late. I'd get a chiropodist in, mum had one that visited as does the home she is now in. It sounds like she needs more than a quick foot soak and nail cut.
I think, much as you want to support your mum with what she thinks she wants, now is the time to go back to the SW and get the month's respite sorted. As others have said there is a time when your mum's needs trump her wants. While your mum is safe in care, you will have time to think clearly about the way forward with her care. In the mean time don't forget to take care of you.

Time to think while knowing mum was safe and looked after would be lovely, hopefully one day we'll get a chance.
I'll look into a chiropodist who does home visits. Maybe memory nurse or carers service or local ageuk will know of some in area who are dementia friendly which would be handy.

 

[annielou]

Well done on cutting the toenails! I had to get the mobile for clinic out to deal with dad’s

Thanks x think she definately needs a professional to sort them but at least not digging in her shoes as much now.

 

[annielou]

Mum got written copy of her diagnosis/care plan from memory clinic today. It was waiting for us when we got back from a visit to my house. Mum had a good read before passing it to me and asking me questions about it.
She didn't know why she'd got it or where it was from at first because she couldn't remember Mondays visit until I reminded her. Then she asked a few questions about what said in letter, she was a bit surprised by some of it, but quite calm about it really.
Then she said again how she thinks it started because she stopped going out and seeing people as much and she used to read lots and do puzzles and doesn't now so she does nothing using her brain. She only really talks to me and that uses her nrain a bit but one person probably not enough.
She told me I should make sure I do stuff, get out and talk to people, not just her, and go out and do stuff, me and hubby should go out together and I need to make sure I don't isolate myself because she doesn't want me to get it.
Part of me was like errr yeah right mum when do I get a chance to talk to, or see anyone but you, or do anything, or go out!!
The other part of me was like oh bless her thats so sweet of her to care and worry about me.
Then a little after that she started talking about how I couldn't stay with her all the time because I would have no life.
Mum said It didn't say in letter she couldn't be on her own did it? I said it doesn't mention anything like that on there. So she said there's nobody said I can't be on my own now then, they did before, but they've not said it now. I'm not sure if I would be ok though, but you cant keep staying so you should go home and get somebody else to come.
She thought for a minute and then said my mum not be very good though because she doesn't sleep anyway. I'm not sure how much my mum knows about this either so she might not be any good to come. They'll have to send a nurse, theres plenty of em.
I should feel pleased she's thinking of other options than me staying but, her mum has been dead for 45 years. Although mum often forgets that and talks about her a lot now and sometimes she calls me mum.
Also mum is constantly saying there are no nurses or care homes or carers because there's no money nowadays and even if there were she doesn't want strangers in her house.
I couldn't make my mind up whether to laugh or be frustrated in the end I just smiled and mmmd at mum.

 

[Pete1]

Absolutely heartbreaking stuff @annielou,

 

[Flavelle]

Hey annielou how lovely your ma is thinking of others..sounds like she can be well chatty. I thought it was kind of funny..mmming is a great reassuring response. It makes sense when the caring roles have reversed to confuse generations. Well, I think so, I know I used to drive my mum mad muddling yesterday, today, & tomorrow. She periodically says she’s my daughter or introduces me as her mum. Can’t converse much these days though! All the best. Silver linings and all that.

 

[annielou]

It amazes me the way a brain can work or not work. How memorys can come and go and muddle up. Tonight mum wanted to know why I'd not told her I got married and this afternoon she asked me if I had a sister as if me and my sister weren't her daughters.
Mum and I were watching a christmas film this afternoon and the woman was talking about christmases with her family and sister when mum asked me 'do you have a sister?'
I said 'yes our (sis)'
mum said ' oh yes shes nice, I haven't got a sister but I have two brothers and they were nice growing up' she was talking to me as if I was someone she knew but not well.
Then a bit later she said 'did you have nice christmases?'
So I said 'yes'
then she mentioned her christmases as a child and asked 'did you have nice christmases with your family ?'
I said 'yes mum, you were at my christmases'
mum looked surprised 'was I?'
I said 'yes cos you're my mum so i had christmas with you'.
I saw it dawn on her then. ' oh yes I am aren't I. Course I had christmas with you. I tell you my brain doesnt work half the time'
Tonight hubby came to mums after work to have his dinner with us. After dinner I went to put the plates in the sink and I could hear mum and hubby chatting. I couldn't hear most of what they were saying through running water etc but did hear hubby say 'we've been together 30 years' and then heard him say a minute later 'I'm married to Andie'.
I found out later mum had asked hubby if me and him were a couple and how long had we'd known each other and then she asked him if he was married and when he said yes she'd asked him who to, but didn't believe him when he said me.
When I came back into room mum was asking when did me and hubby get married? how long have we been together? why did she not know? were we still together? Why had sis not told her?
She couldn't remember we are married, I pointed out our wedding photo on the wall and she knew it was us but couldn't remember it She couldn't remember coming to the wedding and thought we'd kept it secret and she didn't think she'd seen us since and thought nobody had told her about it.
She kept asking us questions like, do we live together? Where do we live ? Has she been there? Do we have kids? She was shocked she'd forgotten and we went over the same thing quite a few times. Then she was asking if we were still together? had we lived with her at her house? Did we live with her now? Did I live with her? Was I looking after her?
When I explained I lived with hubby at our own house but was staying with her for a while she asked how did I know about her? How did I know she wasn't right, had her family told me?
I said 'because I see you all the time so I know how you are'
She asked 'do you, why?'
I said 'because you're my mum' she said 'am I ? (Yes)
So you're my daughter? (Yes i'm Andrea)
And you're married to him? (Yes) Oh thats lovely'
Then she wanted to know how she could not know that and I said she did she'd just forgot this evening, she thought that was awful and said she was sorry and looked quite upset she'd forgotten, so I told her not to worry, she knows it most of time it's just tonight she forgot and she'll probably know again later.
I still cant get my head around how quickly memories come and go and get mixed up. She hadn't realised I was her daughter earlier this afternoon, but then had known who I was an hour later. Then we had been talking about hubby coming before he arrived and she knew us both then and had happily sat with us to eat dinner but then didn't seem to know us after.
Its not the first time mum has forgotten or mixed up who we are, its happening more and more lately but I still can't get my head round it. The brain is a weird thing.

 

[Moggymad]

Hi @annielou I think the toe nail problems have given you the much needed opportunity to start having regular visits from a chiropodist. A stranger to start with but someone she will get used to. This possibly opens the door for you to start to introduce other services. I think now is the time to arrange POA's as a matter of urgency. You will have to start taking control of her life by making decisions for her to protect her from the anxieties that Alzheimers causes. I would remove the literature you were given & take it to your house. The more your mum sees this the more she will get anxious about her future & question what it's all about then forget. But she will remember the feelings of anxiety but not what caused it. Your role now is to protect her by taking decisions & telling her she has nothing to worry about you & your sister will always keep her safe. We had to do this for my mum when it became necessary as the burden on her to make any decisions for herself became too much & all she wanted to know was that she needn't worry about anything & that she would be looked after. Once you take that first step it will get easier & you will benefit too.

 

[DesperateofDevon]

I feel like I have just done an I'm a celebrity bushtucker trial. I have just touched mums FEET
And cut a bit off her big toe nails. I really don't know how I managed it without throwing up, but somehow I did.
Mum was trying again this afternoon to soak and cut her nails and was really struggling as the big toe nails have both grown round into tubes and are really hard and thick. Mum hasn't got great eyesight and was getting nowhere and couldn't make out what part was what so I took a couple of photos in my phone to show her and then after she tried again and failed to cut any of them I gave in and faced my fears and had a go.
Oh my it was yucky and stomach churning and very hard to do as I couldn't get around the nail properly so it was a case of chipping bits off at a time and digging bits out of the middle, ooh I'm going queasy again typing about it now,
She still needs a professional to look at them as they are still long and grown round into tubes but now a bit shorter so won't dig in her shoes as much which might help her walking.
I'm currently sucking a rescue remedy lozenge to recover. Just wanted to share I did have a go

I couldn’t even read your post ... I’m sorry but my mums feet are like cloven hooves!
I joke not ! I have a mobile chiropodist call - mum has only complaints about him but I don’t have to contemplate “the bush tucker trial- a- thon “!!!!!

 

[Pete1]

Hi @annielou, has Mum shown increased confusion over the last week? I'm wondering if she has an infection? Might be worth checking.....

It's really difficult for your Mum, but also very painful for you. I always remember when my Mum said 'How is your Mum now?' felt like a body blow, there were a number of responses I could have given!! I just said like you 'You're my Mum'. There are many awful things that happen with this hideous disease but this has to be up there with the worst. You and your husband sound very patient and caring, and you are helping your Mum in her time of need. Stay strong and keep posting.

 

[annielou]

Thanks for your replies xxx @Moggymad @DesperateofDevon @Pete1
The feet trial was just that a trial and your mums feet sound as yucky. Hoping to get a chiropodist to come, but mum (like me) hates people touching her feet although she managed with me doing it. But then again as I hate feet I didn't touch them much.
She alternates between saying I'll have to cut my toenails they're hurting a bit, to oh no cant have anybody touching them they're fine now, when I remind her we tried and didnt manage cut much off and mention chiropodist.
On the contrary thinking thread I said she should be called Mary as in contrary mary or maybe she could be 'the alternator'
I don't think there's any infection she seems to be going to loo as normal and not complaining of any pain or discomfort or problems. She has had problems before and when she did she usually moans or makes uncomfortable noises when at loo but hasn't recently.
In the time I've been staying (6weeks today) her confussion over things seems to have got worse but steadily so. The past few weeks she seems to be confused more often about not knowing where she lives, that happens every day now and she remembers old houses rather than current one, asking for or about her mum happens most nights now and not knowing about me, hubby and my sister is happening more too.