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Waiting on diagnosis for Mum

Jakesterblack

New member
May 20, 2022
8
0
Mum is 84, memory has been bad for a long time got worse after Dad passed away 6 years ago but last couple years really bad. Last year she wandered and was picked up by a stranger, can't remember anything about it. Mood swings are bad and she can be down right nasty one day and fine the next. Last night phoned me three times, i was up and down to her house as she said she had lost her house keys and the third time she told me someone had been in her house the night before and broken in stolen her keys... no matter how many times i said nobody had been in the house and the keys were there and the door locked it just wasn't sinking in. She got herself into such a state i thought she was going to have a heart attack. Today not saying much about it although these "dreams" seem to be a big part of it all now, dreaming about something, then fixating on it for days and truly believing it's real. There's only me and my sister looking after her, and unfortunately my sister very unwell so it's just me and she won't allow me to get a cleaner in or carers in... i'm working full time and just don't know how to deal with her any more. Had an assessment but yet to be diagnosed. Please any advice will be more than helpful for me
 

karaokePete

Registered User
Jul 23, 2017
6,328
0
N Ireland
Hello @Jakesterblack and welcome to the forum.

Unfortunately delusions and confabulations can be 'par for the course' but often simply agreeing or distracting will work. Reasoning or correcting etc., won't.

A few good tips can be obtained from this thread. Just click the link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

If the arguing started out of the blue it might be caused by an infection which doesn't present any other symptoms. It's the first thing to think about. Even if it isn't an infection a chat with the GP may enable some solution
 

Jakesterblack

New member
May 20, 2022
8
0
Thankyou. We've sent samples to gp but no infection. Some days she's ok but others just bizarre conversations and behaviour that makes no sense at all . Really just wish they would hurry up and diagnose her because this is getting harder to deal with now and she wont accept any help.
 

Pacucho

Registered User
Dec 20, 2009
574
0
Wembley, Middlesex
Hello,
I see you have already received good advice.
I realise you are probably having to deal with a whole range of issues, but the one thing you must focus on is ensuring your mum's GP establishes exactly what she is living with. In other words if it is confirmed your mum has dementia, once the diagnosis is received by you then it makes it much easier to liaise with social services, GP and others to get help.
The diagnosis is the first key step to getting help for your mum, even though this will be difficult afterwards.
Hope this helps,
Paco
 

Jakesterblack

New member
May 20, 2022
8
0
Hi I called the Memory Clinic and even though they assessed her weeks ago we still have no appointment for the diagnosis. They said it can take weeks. Meanwhile i just feel stuck on my own not knowing what to do/not to do.
 

Pacucho

Registered User
Dec 20, 2009
574
0
Wembley, Middlesex
Hi
Sorry to read of the response you had from the memory clinic. I am afraid you are going to have to keep contacting them - even if they say not to - in a positive way to keep them under pressure.
Next time you contact them just tell them what you said in your latest, and do not dumb it down.
Hope this helps,
paco
 

ChrisG

New member
May 18, 2022
2
0
Hi
Sorry to read of the response you had from the memory clinic. I am afraid you are going to have to keep contacting them - even if they say not to - in a positive way to keep them under pressure.
Next time you contact them just tell them what you said in your latest, and do not dumb it down.
Hope this helps,
paco
I am a widow living on my own aged 72 years-I am getting nowhere with my local Older person’s Memory/Mental health clinic-I did have a telephone call with a Mini Memory assessment(last week)consisted of-what is the date/month/year(which I knew from previously looking at my phone)my date of birth(which I knew)remembering and repeating a man’s name and address and how many animals could I name-that was it-he said it was to test my concentration-how can any one assess another’s memory -by phone with such a short test?Today the Older persons memory/mental health psychiatrist rang me(don’t think they can do face to face)and I said she has “a duty of care” and as I think I have vascular dementia could I have an MRI brain scan-well she said as you have had one in the last 12 months-then no-I asked if she had seen the last MRI cd-no she said only the report and I am NOT trained to read these scans anyway-She also said she would telephone my son(who I do not see often)for his views but she could not do that for maybe 3weeks?I said I could pay for a private MRI brain scan-well she said it is probably down to old age-I reminded her of the slogan “This is not getting old-this is getting ill” with no reaction from her-she will not be able to telephone me for another 4 weeks-as she is very very busy also doing her 1 colleague’s work as he is on holiday-really is this acceptable procedure?Should I now percivere with a private (pay for myself) brain scan-My GP surgery are only doing telephone calls -so it is no use calling them-I feel as if no one wants to care for the over 65 year olds in my area?
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
Mum is 84, memory has been bad for a long time got worse after Dad passed away 6 years ago but last couple years really bad. Last year she wandered and was picked up by a stranger, can't remember anything about it. Mood swings are bad and she can be down right nasty one day and fine the next. Last night phoned me three times, i was up and down to her house as she said she had lost her house keys and the third time she told me someone had been in her house the night before and broken in stolen her keys... no matter how many times i said nobody had been in the house and the keys were there and the door locked it just wasn't sinking in. She got herself into such a state i thought she was going to have a heart attack. Today not saying much about it although these "dreams" seem to be a big part of it all now, dreaming about something, then fixating on it for days and truly believing it's real. There's only me and my sister looking after her, and unfortunately my sister very unwell so it's just me and she won't allow me to get a cleaner in or carers in... i'm working full time and just don't know how to deal with her any more. Had an assessment but yet to be diagnosed. Please any advice will be more than helpful for me
Yes, I waited also for a diagnosis and the consultant came to her house. I think that maybe different councils and health trusts have differing lengths of time for coming out after a doctor's assessment. The thing is, even with the diagnosis, you will just be urged to do the sensible thing in whatever way you can achieve it. I think, in my mother's case, the issue which meant that she did not wait an excessive amount of time - I think it was about 6 weeks - was because her safety was in question. My mother had been sometimes double dosing some dangerous blood thinners because she presumed, in her mind, she had not yet taken them. So any matters which are about safety may mean that she might get the memory clinic appointment sooner. I suppose it would therefore be good to keep the GP informed about issues which arise especially if they are potentially dangerous. In my case, I had to "limp along" trying to cope with the situation as best i could until she saw the consultant. And really then the consultant just spoke firmly to mother and to me about what was needed in terms of care and my mother accepted that then. (She may have forgotten at a later stage that she had done this accepting - but the care was in place). Good luck.
 

LynMc

New member
May 30, 2022
6
0
Yes, I waited also for a diagnosis and the consultant came to her house. I think that maybe different councils and health trusts have differing lengths of time for coming out after a doctor's assessment. The thing is, even with the diagnosis, you will just be urged to do the sensible thing in whatever way you can achieve it. I think, in my mother's case, the issue which meant that she did not wait an excessive amount of time - I think it was about 6 weeks - was because her safety was in question. My mother had been sometimes double dosing some dangerous blood thinners because she presumed, in her mind, she had not yet taken them. So any matters which are about safety may mean that she might get the memory clinic appointment sooner. I suppose it would therefore be good to keep the GP informed about issues which arise especially if they are potentially dangerous. In my case, I had to "limp along" trying to cope with the situation as best i could until she saw the consultant. And really then the consultant just spoke firmly to mother and to me about what was needed in terms of care and my mother accepted that then. (She may have forgotten at a later stage that she had done this accepting - but the care was in place). Good luck.
This reads as if I wrote it myself. We have the same problem with my mother in law..she too took an o/d of blood thinners and her regular meds…so she ended up in hospital. The nurse now comes and administers them to her daily. We have to wait till July for a memory clinic appt. Since then she has been in hospital twice, last time being this weekend due to falls and severe mobility issues. We have an ongoing situation with the hospital, it’s a long story but she is in there now and needs a diagnosis so we can move on and plan. They refused previously, even after the overdose to assess her urgently and did not even make the referral until we chased them 2 weeks later. It seems that when they are discharged no one wants to know and it’s next to impossible to get anywhere. She has had two falls since the overdose and still nothing. Any advice from anyone would be great.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
This reads as if I wrote it myself. We have the same problem with my mother in law..she too took an o/d of blood thinners and her regular meds…so she ended up in hospital. The nurse now comes and administers them to her daily. We have to wait till July for a memory clinic appt. Since then she has been in hospital twice, last time being this weekend due to falls and severe mobility issues. We have an ongoing situation with the hospital, it’s a long story but she is in there now and needs a diagnosis so we can move on and plan. They refused previously, even after the overdose to assess her urgently and did not even make the referral until we chased them 2 weeks later. It seems that when they are discharged no one wants to know and it’s next to impossible to get anywhere. She has had two falls since the overdose and still nothing. Any advice from anyone would be great.
It sounds very difficult for you. I don't know why I/ we got seen a bit sooner. So - I got my Mum to the GP under the guise of something else, blood tests or something, but I had already communicated my concerns to the GP and had asked that he might do the memory test thing. So Mum scored worse than she had on 2 tests she had done several years ago. She just about scored in the range of moderate dementia(but only just). It must have been that and my concerns about safety which got her seen. It could also have been timing I suppose as this was last September or October at the time of this GP test and I think it was November or December when the consultant came out. I think, sadly, there are more referrals for dementia related issues especially in old people since the pandemic where lack of stimuli and conversation has added to the toll on people's cognitive abilities. I wonder if they have a back log?
My Mum has also experienced a lot of falls which makes the blood thinner situation even more dangerous! My Mum, however, aged 90 and living alone was sent out of the hospital with the ICRAS (Integrated Community Reablement and Assessment Service) which provided extra nurse visits for a few days followed by a stopgap City Council Carers package. I was very grateful for these things but it must vary from area to area. It sounds so crazy in your situation because it surely costs more to keep someone in hospital than to send someone out to provide a diagnosis.... Good luck.
 

LynMc

New member
May 30, 2022
6
0
It sounds very difficult for you. I don't know why I/ we got seen a bit sooner. So - I got my Mum to the GP under the guise of something else, blood tests or something, but I had already communicated my concerns to the GP and had asked that he might do the memory test thing. So Mum scored worse than she had on 2 tests she had done several years ago. She just about scored in the range of moderate dementia(but only just). It must have been that and my concerns about safety which got her seen. It could also have been timing I suppose as this was last September or October at the time of this GP test and I think it was November or December when the consultant came out. I think, sadly, there are more referrals for dementia related issues especially in old people since the pandemic where lack of stimuli and conversation has added to the toll on people's cognitive abilities. I wonder if they have a back log?
My Mum has also experienced a lot of falls which makes the blood thinner situation even more dangerous! My Mum, however, aged 90 and living alone was sent out of the hospital with the ICRAS (Integrated Community Reablement and Assessment Service) which provided extra nurse visits for a few days followed by a stopgap City Council Carers package. I was very grateful for these things but it must vary from area to area. It sounds so crazy in your situation because it surely costs more to keep someone in hospital than to send someone out to provide a diagnosis.... Good luck.
Thank you for your reply, yes it’s very diffucult.
 

SERENA50

Registered User
Jan 17, 2018
137
0
Hi I called the Memory Clinic and even though they assessed her weeks ago we still have no appointment for the diagnosis. They said it can take weeks. Meanwhile i just feel stuck on my own not knowing what to do/not to do.
Hi

I can understand your feelings. We have been trying to obtain some sort of diagnosis for well, I cannot tell you how long. Probably in the Spring of 2020 and of course covid made it really difficult. Fast forward two years and we had an appointment last week. No diagnosis and yet more tests to rule out or in something called NPH. If we had not pushed and pushed I am sure Dad would have been forgotten. It makes it a bit tricker as he goes to one hospital in the county I am in and his nearest hospital where he went to a clinic was in his area and he had tests somewhere else. We now have another 6-8 week wait for an appointment for this other test. All the time he is gradually getting a little bit worse and accessing help requires some sort of answer as to what is wrong.

I said to my sibling the other day as it is just us two mainly, I literally do not know what to do sometimes. Just keep pestering is my best advice. We will be on the phone doing exactly that if we do not hear at six weeks. They lost his last lot of paper work so leave nothing to chance. Take Care
 

Jakesterblack

New member
May 20, 2022
8
0
Hi

I can understand your feelings. We have been trying to obtain some sort of diagnosis for well, I cannot tell you how long. Probably in the Spring of 2020 and of course covid made it really difficult. Fast forward two years and we had an appointment last week. No diagnosis and yet more tests to rule out or in something called NPH. If we had not pushed and pushed I am sure Dad would have been forgotten. It makes it a bit tricker as he goes to one hospital in the county I am in and his nearest hospital where he went to a clinic was in his area and he had tests somewhere else. We now have another 6-8 week wait for an appointment for this other test. All the time he is gradually getting a little bit worse and accessing help requires some sort of answer as to what is wrong.

I said to my sibling the other day as it is just us two mainly, I literally do not know what to do sometimes. Just keep pestering is my best advice. We will be on the phone doing exactly that if we do not hear at six weeks. They lost his last lot of paper work so leave nothing to chance. Take Care
Thanks, I know it's so worrying and frustrating. I called the Memory Clinic again and they said mum has appointment in six weeks... i told them what has been happening and that i'm now on my own looking after her and full time job - they said if she gets worse ie, starts wandering or is at risk to contact them again and they will see what they can do.. I just have to wait - at the moment doing day at a time. Hope you get some help with your Dad.
 

Pacucho

Registered User
Dec 20, 2009
574
0
Wembley, Middlesex
Sorry to read about the problems you are experiencing in either getting a diagnosis for yourself or someone you support. As I have read you need to be determined and persistent.
One tip I can give is when you next contact your GP and the memory clinic the main issue to say is that you cannot move on with your life until the assessment is made. If you are a family carer, for example, explain how it affects your own personal life, working life, leisure time, and so on. Also, explain how without a diagnosis you and the person you support cannot get help from social services and other local services. In other words they have more than one patient - the person you support and yourself.
If necessary do not be afraid to involve your GP.
Hope this helps,
Paco
 

Jakesterblack

New member
May 20, 2022
8
0
Thanks Paco. Had a terrible weekend with mum, she locked herself in house on Friday night, then Saturday said someone had been in and took her money during the night, she was so scared and just so old and frail looking but by Sunday was back to the not so nice mum shouting at me and asking me what i was up to. I said i have contacted GP about carers and she totally went off on one saying she doesn't need help and if she did she would ask for it etc. I honestly can't cope on my own with her any more. I have called the GP today and told them i need help. I am trying to hold down a full time job have my own family and these "episodes" as i call them with mum and more and more frequent.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
It is very, very hard, I know. You really do sound in need of help. I fall into the same trap of discussing things with my mother or trying to make her see reason...but, of course they can't. It only makes someone with dementia worse. Even though I know this, I try reasoning things with my mother and then get into a sort of argument and realise I shouldn't have bothered. It sounds like you know she needs care help, you know she needs that diagnosis. Your Mum may never agree that she needs help as the dementia probably makes her unable to recognise it. I think sometimes it is better to do your negotiating alone with medical professionals and say as little as possible to the person with dementia, whose best interests you are acting upon. This is all easier to come to terms with once the diagnosis is in place. It is very frustrating and concerning to have to wait. My mother never believed she needed any care and on some level she probably still thinks she doesn't. This doesn't make her care, or the decision to get it in place, wrong. I hope the GP can help you. You need this.
 

Jakesterblack

New member
May 20, 2022
8
0
It is very, very hard, I know. You really do sound in need of help. I fall into the same trap of discussing things with my mother or trying to make her see reason...but, of course they can't. It only makes someone with dementia worse. Even though I know this, I try reasoning things with my mother and then get into a sort of argument and realise I shouldn't have bothered. It sounds like you know she needs care help, you know she needs that diagnosis. Your Mum may never agree that she needs help as the dementia probably makes her unable to recognise it. I think sometimes it is better to do your negotiating alone with medical professionals and say as little as possible to the person with dementia, whose best interests you are acting upon. This is all easier to come to terms with once the diagnosis is in place. It is very frustrating and concerning to have to wait. My mother never believed she needed any care and on some level she probably still thinks she doesn't. This doesn't make her care, or the decision to get it in place, wrong. I hope the GP can help you. You need this.
Hi, thankyou for your reply. I have came to conclusion i don't discuss any of it just now plus i am just too exhausted to deal with it, went down last night and didn't mention the gp call or anything, called memory clinic today and went over the whole lot so just need to wait and hope someone gets me some help. I feel so guilty doing this and her not happy about it but i can't go on like this and also feel guilty for feeling the way i do about when she has these outbursts. I go from feeling so sorry for her some days to resenting the fact that i have to go down there every night after work and all weekend.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
Hi, thankyou for your reply. I have came to conclusion i don't discuss any of it just now plus i am just too exhausted to deal with it, went down last night and didn't mention the gp call or anything, called memory clinic today and went over the whole lot so just need to wait and hope someone gets me some help. I feel so guilty doing this and her not happy about it but i can't go on like this and also feel guilty for feeling the way i do about when she has these outbursts. I go from feeling so sorry for her some days to resenting the fact that i have to go down there every night after work and all weekend.
I feel very similar feelings with my mother. Sometimes I feel as though I am having an argument with myself - so justifying to myself what I am doing on her behalf( in my mum's case this is most recently regarding instating a second daily care slot) whilst also questioning my decision. I have got my mother, unlike you, to accept what I have done...and it is her money...but she says always, about the carers, " They don't do very much". My main reason for getting the second care slot was to have some other tablets dosed separately as they work more efficiently if kept apart from the main bulk but I also feel very concerned about the neediness and confusion she has and having. The extra evening care slot makes me feel like I am covering that too. She has actually seemed less needy since I made the change.
You need the help. If you don't get some support you cannot properly support your Mum....and, as you can see, even with support in place, the main carer still feels guilt. Maybe when you are feeling more rested(and this may involve stepping back a bit) you will be able to think of a way of convincing your mother that she needs some help(which isn't you, always!). You might need to stretch the truth so that she can understand and accept. With my mother, one of the things I can say is that the "doctor says she needs to do something". Sometimes I feel this is virtually true anyway because I have been, like you, not coping very well- and there is generally only me to care as my brother has "opted out". My mother is in awe of doctors so it will usually work for her, if needed. You might think of something which will work for your mum- anything...even if it is a little white lie, especially if it cuts down the conflict situation. Good luck.
 

Freddiemc

New member
May 26, 2022
7
0
Mum is 84, memory has been bad for a long time got worse after Dad passed away 6 years ago but last couple years really bad. Last year she wandered and was picked up by a stranger, can't remember anything about it. Mood swings are bad and she can be down right nasty one day and fine the next. Last night phoned me three times, i was up and down to her house as she said she had lost her house keys and the third time she told me someone had been in her house the night before and broken in stolen her keys... no matter how many times i said nobody had been in the house and the keys were there and the door locked it just wasn't sinking in. She got herself into such a state i thought she was going to have a heart attack. Today not saying much about it although these "dreams" seem to be a big part of it all now, dreaming about something, then fixating on it for days and truly believing it's real. There's only me and my sister looking after her, and unfortunately my sister very unwell so it's just me and she won't allow me to get a cleaner in or carers in... i'm working full time and just don't know how to deal with her any more. Had an assessment but yet to be diagnosed. Please any advice will be more than helpful for me
I can completely empathise with you. It took me from February after a re referral to the memory clinic to get a diagnosis for my mam. She got diagnosed with Alzheimer's and we left with a prescription and that was that. No support ,no signpost for help. I feel like we ve just been left to work it out for ourselves. I had previously phoned carers but they can't do anything without a referral... can't get a referral without a diagnosis. Now we have a diagnosis I requested an emergency referral.Someone took my details a week ago and still no one has been in touch. I emailed the police about registering my mam for on the Herbert Protocol and still no one has replied. I honestly feel your despair as I too am holding down a job and am always getting calls about what my mam has been up to. It's just so frustrating.
 

SERENA50

Registered User
Jan 17, 2018
137
0
Hi

There are so many people feeling the same way. Reasoning with Dad , no chance , he keeps saying "sitting here right now there is nothing wrong with me" That is when he is on a good day. Our weekend was pretty naff as well. Second week that my dad and sibling have had words between them well when I say that it is Dad being pretty obnoxious although he cannot help it alot of the time but it is still stressful for everyone else. I went to see my OH parents same age as Dad and the contrast is so obvious. It is a social visit with them but my Dad any visit is care, house, sorting his post out, putting his washing away, making his lunch or tea, cleaning, sorting medication. His unreliable cleaner is off sick again so I took the morning off to tidy up, clean, put his bins out, change his bed etc etc. Yes we are doing it ourselves but not sure for how much longer. We don't have a a diagnosis either, still going through the motions Sometimes your head just spins as to what to do... You must seek help xx (she says trying to remember to take her own advice)
 

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