Worried about mums Memory clinic results appointment tomorrow

[annielou]

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.

 

[Grannie G]

Also are there questions I should be asking tomorrow?

I`d let them tell you what they want you to know first and then the questions will come naturally.

If after the appointment you think of other questions, jot them down ready for the next appointment.

I hope all goes as well as possible. I know how daunting it is, we are full of anxiety.

 

[Andrew_McP]

Mum has her appointment at memory clinic tomorrow and I'm hoping this is when we get a diagnosis, but what else happens?

We were given a prescription, some leaflets, a phone number to ring for advice, and an appointment for six months' time. But the official diagnosis does at least open up other doors and benefits... if you go hunting for them. Maybe it depends which area you're in.

Don't built it up into too much. Just relax as best you can and be prepared for your mother to be a bit... well, unsettled. My Mum had forgotten most of the appointment and diagnosis by the time we'd got home, but she remembered she was cross with me for taking her to see 'that smiley man' for weeks. I was just glad she got in the taxi with me to get there in the first place!

It's a hurdle you have to get over. By this time tomorrow it'll be done. Best of luck to you both.

 

[Pete1]

Hi @annielou, I agree with the sound advice already provided....don't expect too much, my own experience was that they offered very little practical help or advice (although others have had more positive experiences), but did leave with a handful of leaflets!! They should send you a formal follow up letter outlining the diagnosis (They did when I took Mum), and really all it does is put a name to it finally, but it does open doors to care, attendance allowance, potential reduction in council tax etc as already mentoned. Mum had forgotten the diagnosis by the time we got home, in fact probably before we got out of the car park. The written confirmation did help me to persuade Mum to accept some external support....eventually. All the best for tomorrow, and don't worry about it, really.

 

[Izzy]

I hope your appointment goes well today.

I wondered if you would find the Society’s Dementia Guide useful afternoon you have the diagnosis. You can download it here.

https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-guide

 

[Sarasa]

Hope it goes well today, and that it does open the doors to more support.

 

[annielou]

Thanks for all your replies xxx feeling a bit better about it now, that helps a lot xxx
Mum got up a couple of extra times last night to ask if going to hospital or something today and did she need to get ready because we had to be up early, one time she thought she was going with her brother. She was worried might over sleep even though usually up around 7 ish and we'd have plenty of time then so in end I told her had be up by 7.30 and she wrote it down. She seemed to settle a bit better after that thankfully.

 

[annielou]

So we had mums appointment at memory clinic today and she has been diagnosed with alzheimers.
We were seen by psychiatrist who was very nice and calm. She asked mum and me a few questions about mums symptoms and then went over results of tests mum did with memory nurse. She said mum scored 57 out 100 on test, the average is 86 so she was falling well below.
Ct scan showed no signs of tumour or anything else that would explain mums symptoms. But it showed that at some time mum had had a small stroke right in middle of her brain that we wouldn't have noticed. Also said her brain is quite shrunken and had got furring of blood vessels in her brain. Some shrinking is down to natural ageing but mums had more than would expect at this age and it was signs of disease.
She mentioned the blood tests dr did and said they showed quite low vitamin levels which suggested malnutrition (not surprising with how mum has been eating) but they didnt explain mums symptoms either.
So that along with mums score on memory test, what I put on my questionnaire about what mum could do and what we told memory nurse on her visit lead to diagnosis of alzheimers.
She explained alzheimers to mum using a plastic brain and as she described progression and what was affected as the disease affects different parts of brain. Hubby and I noticed mum has shown most of the symptoms already to some degree.
She explained to mum that it won't get better and can't be cured and it will get worse, but said there are tablets mum can take that can seem to slow the symptoms and keep her as she is for longer. Mum said she wanted to try them so she is going to arrange to prescribe galantime, she picked this as thinks it'll be the one least likely to affect mums tummy.
She asked Mum how she felt and mum told her she was quite shocked at alzheimers and said she thought just having few bits where forgot things a bit and was also shocked that it would get worse as she thought she was just a bit off and would get better. Mum thought it was because she had stopped going out and doing as much but Psychiatrist told her its nothing mum has done or not done. That alzheimers typically starts to noticeably show symptoms in 70s but disease started 10-15 years before.
Psychiatrist told mum that she will have people coming to see her and lots of decisions to make and now is the time to make them to decide on what help she wants now and what she wants to happen when things do get worse.
She gave us a folder with a booklet in with bit about dementia and memory service and some leaflets for local services. She said the memory nurse will be in touch in a week or two and will arrange prescription for mums tablets then and go over things with us.
When we came out of clinic Mum said so basically theres nothing they can do for me it can't be cured. I said no, but might be able to slow it down with these tablets and we can do things and get help to make it so you can live life with it as good as you can.
She has alternated through the daybbetween forgetting shes been, saying she doesn't want this and can't do it, and looking at a few of the leaflets and asking questions about what help can she get.
She's still worried about how she will be on her own, but doesn't think its fair on me to give up everything to look after her and live with her, but she doesn't want to go in a home or have carers because she doesn't like idea of strangers coming into her house but she could try day centre as she'd prefer to go out somewhere.
I told her I know its scary but if she keeps saying no to everything then they'll take offer away and if wants it later it'll be too late. So it would be worth her trying whats on offer and seeing if it helps or likes it first before dismissing things.

 

[Kuiper27]

I'm glad to hear that you got a diagnosis for your mum. It does sound daunting and a bit upsetting, I should imagine for you both. I'm glad she doesn't have a brain tumour but I was intrigued how they were able to tell about the mini stroke and how long this has been going on.

I wondered as well how you feel about this diagnosis. This does seem a bit of a silly question but I wondered if you felt any kind of relief, knowing what the condition actually is. I may sound a bit nosy but I'm trying to glean information before dealing further with my dad. You clearly have put your mum first and made it all about her but don't seem to mention anything about yourself. I know that this isn't about us but we are directly involved with their care.

You are doing a wonderful job with your mum and getting her the best care possible. I've learnt a lot about the process from your post and would like to thank you for sharing

 

[DesperateofDevon]

So we had mums appointment at memory clinic today and she has been diagnosed with alzheimers.
We were seen by psychiatrist who was very nice and calm. She asked mum and me a few questions about mums symptoms and then went over results of tests mum did with memory nurse. She said mum scored 57 out 100 on test, the average is 86 so she was falling well below.
Ct scan showed no signs of tumour or anything else that would explain mums symptoms. But it showed that at some time mum had had a small stroke right in middle of her brain that we wouldn't have noticed. Also said her brain is quite shrunken and had got furring of blood vessels in her brain. Some shrinking is down to natural ageing but mums had more than would expect at this age and it was signs of disease.
She mentioned the blood tests dr did and said they showed quite low vitamin levels which suggested malnutrition (not surprising with how mum has been eating) but they didnt explain mums symptoms either.
So that along with mums score on memory test, what I put on my questionnaire about what mum could do and what we told memory nurse on her visit lead to diagnosis of alzheimers.
She explained alzheimers to mum using a plastic brain and as she described progression and what was affected as the disease affects different parts of brain. Hubby and I noticed mum has shown most of the symptoms already to some degree.
She explained to mum that it won't get better and can't be cured and it will get worse, but said there are tablets mum can take that can seem to slow the symptoms and keep her as she is for longer. Mum said she wanted to try them so she is going to arrange to prescribe galantime, she picked this as thinks it'll be the one least likely to affect mums tummy.
She asked Mum how she felt and mum told her she was quite shocked at alzheimers and said she thought just having few bits where forgot things a bit and was also shocked that it would get worse as she thought she was just a bit off and would get better. Mum thought it was because she had stopped going out and doing as much but Psychiatrist told her its nothing mum has done or not done. That alzheimers typically starts to noticeably show symptoms in 70s but disease started 10-15 years before.
Psychiatrist told mum that she will have people coming to see her and lots of decisions to make and now is the time to make them to decide on what help she wants now and what she wants to happen when things do get worse.
She gave us a folder with a booklet in with bit about dementia and memory service and some leaflets for local services. She said the memory nurse will be in touch in a week or two and will arrange prescription for mums tablets then and go over things with us.
When we came out of clinic Mum said so basically theres nothing they can do for me it can't be cured. I said no, but might be able to slow it down with these tablets and we can do things and get help to make it so you can live life with it as good as you can.
She has alternated through the daybbetween forgetting shes been, saying she doesn't want this and can't do it, and looking at a few of the leaflets and asking questions about what help can she get.
She's still worried about how she will be on her own, but doesn't think its fair on me to give up everything to look after her and live with her, but she doesn't want to go in a home or have carers because she doesn't like idea of strangers coming into her house but she could try day centre as she'd prefer to go out somewhere.
I told her I know its scary but if she keeps saying no to everything then they'll take offer away and if wants it later it'll be too late. So it would be worth her trying whats on offer and seeing if it helps or likes it first before dismissing things.

So my Mums got to like the carers coming in - it’s been a battle with Mum but stick with it! Take all help that’s offered & tell your Mum she can always cut back ( not happening if you get a chance to have some input!)
Good luck
Keep posting

 

[Sarasa]

Hi @annielou, I can imagine you have very mixed emotions having your concerns about your mother confirmed. It sounds like the appointment was very thorough and that you and your husband have a clearer idea of how things may progress and what help you can get.
I think now is the time to consider seriously what you want to happen next. Thinking of you and your mum {{{annielou and her mum}}}

 

[Izzy]

That sounds like a very thorough assessment feedback, Hard to take it all in but it sounds like your mum is open to discussing things. I agree with others that now is the time to get things in place, like Power of Attorney.

I wondered if this booklet would be of any help -

Understanding Your Diagnosis.

 

[Pete1]

Hi @annielou, it sounded as though your Mum didn't get too distraught. My Mum was still in denial in terms of support after the diagnosis, even though with hindsight she needed it ....same reasons, strangers in the house, still believing the situation would improve, pride at admitting needing help etc. Once I had the diagnosis I got attendance allowance which I told Mum was for her care, and arranged a cleaner and gardener (which were two jobs I was doing on top of everything else). The appointment of a morning carer was after Mum had a fall, then morning lunch and evening. If I could give one bit of advice is that I probably waited to long to get the care in as a preventative measure. I think you need to strike whilst the iron is hot and start to look at a care package now you have diagnosis - you will certainly need it to provide support to you. It will be interesting to know what your Mum thinks today, whether it's denial or greater acceptance. Let us know how it goes, all the best to you and Mum.

 

[annielou]

I'm glad to hear that you got a diagnosis for your mum. It does sound daunting and a bit upsetting, I should imagine for you both. I'm glad she doesn't have a brain tumour but I was intrigued how they were able to tell about the mini stroke and how long this has been going on.

I wondered as well how you feel about this diagnosis. This does seem a bit of a silly question but I wondered if you felt any kind of relief, knowing what the condition actually is. I may sound a bit nosy but I'm trying to glean information before dealing further with my dad. You clearly have put your mum first and made it all about her but don't seem to mention anything about yourself. I know that this isn't about us but we are directly involved with their care.

You are doing a wonderful job with your mum and getting her the best care possible. I've learnt a lot about the process from your post and would like to thank you for sharing

Thanks for you reply x
I don't know how they can tell about mini stroke I assume it shows up as somerhing on scan that they recognise. Same with the furring of blood vessels and shrinking of brain. The 10-15 years they told us about when disease would have started I assume is something they have discovered through research.
I think my sister and I both feel a little relief about finally having diagnosis after a long time of thinking something wrong but not officialy having it confirmed. Even though we knew something was wrong and it was going to be some sort of dementia I think there was still a little part that hoped they'd say it was something else that was fixable so there is also some sadness to having official diagnosis.
But overall it feels better to have diagnosis confirmed by doctor, to know not been worrying unnecessairily and building things up. From our point of view we can say we're doing this or not because mum has alzheimers rather than just because we're worried about her, or because shes having problems with her memory with no formal reason.
I'm not sure if it will be helpful when dealing with mum or not yet as only just happened, but I'm hoping it might help sway her into accepting help more as now it is officially alzheimers, its not just a blip because she's run down or lonely and going to get better soon. It may help, it may not as she will keep forgetting yesterday happened. She's already picked folder up this morning they gave us yesterday and asked when did she get it. I'm hoping to leave it around for a while so she might keep picking it up and flicking through it, it will keep conversation open for accepting some help or trying day centre.
Good luck with your dad x

 

[Grannie G]

Having a diagnosis helps you know what youre dealing with @annielou.

 

[annielou]

Thanks @DesperateofDevon @Sarasa @Izzy @Pete1 @Grannie G xxxxx

Hoping that leaving folder about will help us keep talking about it and I can act on any clink in mums armour of not accepting help that appears while chatting to get her to try it.
I'm trying the 'accept what is offered and give it a go you can always say no after tried it' approach, dunno if will work but I'll try.
I'm sure there'll be lots of denying and refusing and forgetting even been to clinic but I just keep hoping this could make persuading her a tiny bit easier.
Will download that guide and print it to put in the folder thanks Izzy x

 

[Pete1]

Hi @annielou, it must be very hard for a loved one with dementia/Alzheimers to accept but also understand a diagnosis. I know my Mum kept asking what does it mean going forward - she had cared for my Dad when he went through the same so should have had an idea, but it's different if it is you as you are trying to navigate it with the impairment of dementia. I will be candid if I had waited for Mum to say 'yes, I think I need some help' it would never have happened, even when I was washing soiled bed sheets etc. I said we needed to do it as I simply couldn't cope and more and was at my wits end, which was the moment she agreed. The strangest thing in all this was she actually enjoyed the company when it was arranged!! You and your sister obviously love and care for your Mum very much, but organising help and support for her at an 'early' stage is the best thing to day for all of you, hopefully over the next week or so you can start to move things forward. All the best @annielou.

 

[annielou]

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.

 

[Grannie G]

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.

I`m not surprised your mum is upset and scared and you must be too.

Perhaps from now, you play it by ear and only discuss it if your mum starts to talk about it.
It`s probably even more confusing and worrying talking about something when there really is no answers.

Have a look at these links. They might help you help your mum.

https://www.alzheimers.org.uk/about...-diagnosis/diagnosis/adjusting-your-diagnosis

https://www.alzheimers.org.uk/get-s...care/understanding-supporting-person-dementia

 

[Pete1]

Hi @annielou, that is a heartbreaking post, I really feel for you and Mum. It doesn't sound as though she can have any concept of her own situation, which sadly means all of the decision making is now down to you and your sister. My own Mum used to say she was a waste of space and also the fear of not knowing where she was, both of which I found more upsetting than most of the other dreadful things that go hand in glove with this dreadful disease. I also had to go on 'toenail duty' and soak and cut Mum's toenails as she could no longer do it - not my favourite past time I have to admit! You will probably need to start doing the same. It does also sound as though Mum's mobility is reducing too which is difficult to manage, as she will believe she can do far more than she is capable of. You must be absolutely exhausted, emotionally and physically, you have been a rock for your Mum through all of this, but make sure that someone is caring and watching out for you too. All the best - keep posting.