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Waiting on diagnosis for Mum

Jakesterblack

Registered User
May 20, 2022
16
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)
Hi I know it's awful, I had another two phone calls in lunch hour today memory clinic saying get sample in case urine infection.. gp saying can't do that unless memory clinic send letter... honest to god it's like one by circle going round and round getting nowhere... I think you are also near breaking point by the sounds of it and I know i have done what i can but can't keep this up as it's just mentally and physically exhausting me and i can feel my stress levels rise daily. Last couple of nights visits have been fine, yes repeating same stuff a million times but i can deal with that, no episodes as i now call them and no outbursts just the usual repetative conversations but that I can cope with, it's all the other bits I am struggling with. Good luck to you also hope you get somewhere, a day at a time.. that's how i'm trying to get through it x
 

SERENA50

Registered User
Jan 17, 2018
157
0
Hi I know it's awful, I had another two phone calls in lunch hour today memory clinic saying get sample in case urine infection.. gp saying can't do that unless memory clinic send letter... honest to god it's like one by circle going round and round getting nowhere... I think you are also near breaking point by the sounds of it and I know i have done what i can but can't keep this up as it's just mentally and physically exhausting me and i can feel my stress levels rise daily. Last couple of nights visits have been fine, yes repeating same stuff a million times but i can deal with that, no episodes as i now call them and no outbursts just the usual repetative conversations but that I can cope with, it's all the other bits I am struggling with. Good luck to you also hope you get somewhere, a day at a time.. that's how i'm trying to get through it x
Thanks 💕 It is all the things like going to get the prescription and my poor sister went multiple places but due to Brexit short supply so that's another phone call to the doctors for an alternative prescription, all time consuming when you are also working as we both are. I suppose a diagnosis changes little other than being able to say it isn't normal ageing and you can access things. Been up since 4.30am, the peri menopause on top of this is not good lol ...one day at a time like you say take care xx
 

Jakesterblack

Registered User
May 20, 2022
16
0
Thanks 💕 It is all the things like going to get the prescription and my poor sister went multiple places but due to Brexit short supply so that's another phone call to the doctors for an alternative prescription, all time consuming when you are also working as we both are. I suppose a diagnosis changes little other than being able to say it isn't normal ageing and you can access things. Been up since 4.30am, the peri menopause on top of this is not good lol ...one day at a time like you say take care xx
I can totally sympathise. I had another GP call yesterday, urine fine which i knew they would say and bloods fine... i said to them how many times do I have to do this before you will diagnose my mum and help me... nothing from social work, nothing from memory clinic... just left to get on with it even though i said two weeks ago i'm really struggling. Mum hasn't had any more episodes as I call them just the usual not making sense with any conversation, asking things a million times, repeating same stuff... that i can cope with it's the episodes when she gets herself into such a state I can't calm her down or the nasty side when she says the most hurtful things... Don't know if this is the norm to flit it and out of it to a certain degree... don't know enough about it tbh which is why i really need help... As for the other i came off HRT 6 weeks ago and i'm struggling, back to full flow with the flushes and night sweats... like you say not ideal with everything else going on... definitely one day at a time xxx
 

SERENA50

Registered User
Jan 17, 2018
157
0
I can totally sympathise. I had another GP call yesterday, urine fine which i knew they would say and bloods fine... i said to them how many times do I have to do this before you will diagnose my mum and help me... nothing from social work, nothing from memory clinic... just left to get on with it even though i said two weeks ago i'm really struggling. Mum hasn't had any more episodes as I call them just the usual not making sense with any conversation, asking things a million times, repeating same stuff... that i can cope with it's the episodes when she gets herself into such a state I can't calm her down or the nasty side when she says the most hurtful things... Don't know if this is the norm to flit it and out of it to a certain degree... don't know enough about it tbh which is why i really need help... As for the other i came off HRT 6 weeks ago and i'm struggling, back to full flow with the flushes and night sweats... like you say not ideal with everything else going on... definitely one day at a time xxx
💕 We have been along this road all through covid and before that if I look back so that is what 3 or 4 years. They , the professionals are finally starting to take some notice as we keep going back about things, POA lodged at the doctors for health and well being etc. A lot of persistence and determination is required and also learning how to deal with professionals as well. We had a physio out Tuesday, had to take the day off, I actually asked him if he had read Dad's notes because if he had he would know that we are up against it trying to get Dad to do exercises for his knee, to be more active for his COPD when he lives alone and can't remember what the person has said to him. Moods are variable, or variations of Dad, the fixations on certain things, neighbours usually, the routine of buying the same things at the same time of day, can be nasty, can be overly happy, can be depressed and I could go in the morning and have one mood and my sister receives another in the afternoon. It might help to keep notes , we started to as it felt like no-one was believing what we were saying as his mood is always good when someone calls. The physio Tuesday for example , good mood or should I say hostess mode. Let us know how you go on. We potentially have an appointment next week at the neurology clinic so fingers crossed. x
 

Jakesterblack

Registered User
May 20, 2022
16
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)
Things I thought were getting better... phoned GP four occasions eventually they said refer as urgent to social work but today had the meeting, mum went off on one, not happy at all and basically long story short, nothing wrong with her and she doesn't need carers so refusing help...... i actually cried and said to her i can't carry on doing what i'm doing and she doesn't realise because she is forgetting all these episodes where i get phoned 3 times a night to go down and someone has broken in.. she has no idea obviously of how stressful this is... i left and came back to work feeling totally deflated and exhausted. We have memory clinic in two weeks and social work said wait until diagnosis and get back in touch with them.. i realise though i can't force carers on to her unless we go down the power of attorney route which my sister is but she is so unwell this is the last thing i want to bother her with... it's all just so frustrating and exhausting....
 

SERENA50

Registered User
Jan 17, 2018
157
0
Things I thought were getting better... phoned GP four occasions eventually they said refer as urgent to social work but today had the meeting, mum went off on one, not happy at all and basically long story short, nothing wrong with her and she doesn't need carers so refusing help...... i actually cried and said to her i can't carry on doing what i'm doing and she doesn't realise because she is forgetting all these episodes where i get phoned 3 times a night to go down and someone has broken in.. she has no idea obviously of how stressful this is... i left and came back to work feeling totally deflated and exhausted. We have memory clinic in two weeks and social work said wait until diagnosis and get back in touch with them.. i realise though i can't force carers on to her unless we go down the power of attorney route which my sister is but she is so unwell this is the last thing i want to bother her with... it's all just so frustrating and exhausting....
Hi

💕 I agree it is frustrating xx I am afraid without a diagnosis or even with one it is still hard going. Myself and my sister are increasingly aware that we are not meeting Dad's needs but Dad reckons he has no needs anyway. We have an appointment today to see the neurologist again and then it will mean another wait possibly or just sent away who knows. Be persistent is my tip, keep a dairy of stuff to present 'your case' if you like because sometimes I feel that people don't believe carers. Dad can appear to be firing on all cylinders with professionals but once they have gone it is back to normal business. Makes you feel like you are going bananas. If you can get some sort of help or even a break for yourself it will help alleviate some stress, on saying that I know how hard it is. We have a cleaner every two weeks and thank god she is back off sick because Dad declared he was having no-one else and he didn't need one. I cannot manage his stuff and my own and work nor my sister. I felt a sigh of relief when she said she was back lol.... When I read on here it is often a crisis that comes along and forces issues, We will probably be in that bracket despite best efforts. Two weeks will go quickly x good luck x
 

Mel-123

New member
Jul 8, 2022
2
0
We first noticed changes with mum during lockdown, repeated telephone conversations. Since they there has been a significant decline. She had a brain scan during lockdown and no one was allowed to attend with her. Since found out they told her the blood flow around the brain was not how it should be. It took months and a lot of mithering with her gp to be seen at the memory clinic. This was September 2021, since then we had a therapist visit and I made a referral to social services as dad was struggling. Mum now attends a weekly day care session. I have been astounded by the incompetence of the memory clinic, we had an appointment about 1 month ago, phone call an hour before to cancel as this was at as clinic and they had not received her notes! Then this week phone call to say she should have attended an appointment. They rang my mum (who has ‘memory problems’ and gave her an appointment over the phone with no email/letter follow up. My dad was out walking there dog at the time of this call! So yet again we await the diagnosis appointment. So frustrating!
 

SERENA50

Registered User
Jan 17, 2018
157
0
We first noticed changes with mum during lockdown, repeated telephone conversations. Since they there has been a significant decline. She had a brain scan during lockdown and no one was allowed to attend with her. Since found out they told her the blood flow around the brain was not how it should be. It took months and a lot of mithering with her gp to be seen at the memory clinic. This was September 2021, since then we had a therapist visit and I made a referral to social services as dad was struggling. Mum now attends a weekly day care session. I have been astounded by the incompetence of the memory clinic, we had an appointment about 1 month ago, phone call an hour before to cancel as this was at as clinic and they had not received her notes! Then this week phone call to say she should have attended an appointment. They rang my mum (who has ‘memory problems’ and gave her an appointment over the phone with no email/letter follow up. My dad was out walking there dog at the time of this call! So yet again we await the diagnosis appointment. So frustrating!
Hi

Totally empathise xx We often have people ringing Dad about appointments which he will only remember perhaps the name of the person maybe the date not the time and he can't take a message and write numbers down. This leads to frantic calls by either my sister or me working out who it might be. We had an appointment with the neurologist last week which now leads to further test for three days in hospital within the next three months if it is confirmed he has NPH he may be offered a stent but again that may improve mobility but the brain functions will not improve. If they don't think it is that then they will more than likely conclude brain atrophy/MCI which is pretty much a dementia illness anyway so maybe then we can make some sort of plans... It won't change anything of course but for us knowing would be helpful especially when dealing with other professionals. Dad couldn't even recall what had been said 😢.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,473
0
Yorkshire
Hello @Mel-123
A warm welcome to DTP

Maybe ask the Clinic to follow up any phone call with a letter or email so there's a record ... you'd think their systems would do this automatically, why not point this out to them! ... I doubt any of us would make such an error

Despite that, you sound as though you are managing to make other key arrangements ... I suspect you've thought of LPAs for both your mum and dad too

Now you've joined us here, do keep posting, maybe start a thread of your own with anything that's on your mind
 

Jakesterblack

Registered User
May 20, 2022
16
0
We first noticed changes with mum during lockdown, repeated telephone conversations. Since they there has been a significant decline. She had a brain scan during lockdown and no one was allowed to attend with her. Since found out they told her the blood flow around the brain was not how it should be. It took months and a lot of mithering with her gp to be seen at the memory clinic. This was September 2021, since then we had a therapist visit and I made a referral to social services as dad was struggling. Mum now attends a weekly day care session. I have been astounded by the incompetence of the memory clinic, we had an appointment about 1 month ago, phone call an hour before to cancel as this was at as clinic and they had not received her notes! Then this week phone call to say she should have attended an appointment. They rang my mum (who has ‘memory problems’ and gave her an appointment over the phone with no email/letter follow up. My dad was out walking there dog at the time of this call! So yet again we await the diagnosis appointment. So frustrating!
 

Jakesterblack

Registered User
May 20, 2022
16
0
I know exactly what you mean about the Memory Clinic and GP's I really do wonder what we have to do to get help of some sort. I have the memory clinic tomorrow and i honestly think if diagnoses given to mum she will just sit there and say there is nothing wrong with me I don't know what you are all talking about and that will be it. I had two nights off last week, i had to do it, if she won't accept carers or help and said she can do it on her own i have to pull back for my own sanity. With my sister ill i went and spent time with her which is what i should be doing just now. I feel so guilty not going down every night after work. I went down yesterday but she wasn't in the best of moods and i find on days like that i just do what i need to do and leave... why do i feel guilty about everything?
 

Jakesterblack

Registered User
May 20, 2022
16
0
Hi

💕 I agree it is frustrating xx I am afraid without a diagnosis or even with one it is still hard going. Myself and my sister are increasingly aware that we are not meeting Dad's needs but Dad reckons he has no needs anyway. We have an appointment today to see the neurologist again and then it will mean another wait possibly or just sent away who knows. Be persistent is my tip, keep a dairy of stuff to present 'your case' if you like because sometimes I feel that people don't believe carers. Dad can appear to be firing on all cylinders with professionals but once they have gone it is back to normal business. Makes you feel like you are going bananas. If you can get some sort of help or even a break for yourself it will help alleviate some stress, on saying that I know how hard it is. We have a cleaner every two weeks and thank god she is back off sick because Dad declared he was having no-one else and he didn't need one. I cannot manage his stuff and my own and work nor my sister. I felt a sigh of relief when she said she was back lol.... When I read on here it is often a crisis that comes along and forces issues, We will probably be in that bracket despite best efforts. Two weeks will go quickly x good luck x
 

Jakesterblack

Registered User
May 20, 2022
16
0
I hope you got on ok at Neurologist. I am thinking about a secret cleaner... like that even once a fortnight take mum out and the cleaner goes in while we are out for couple of hours... i think it's the only way i can do it x
 

SERENA50

Registered User
Jan 17, 2018
157
0
I hope you got on ok at Neurologist. I am thinking about a secret cleaner... like that even once a fortnight take mum out and the cleaner goes in while we are out for couple of hours... i think it's the only way i can do it x
That is exactly what happens with dad. He still manages to go out on a Tuesday with a couple of friends and that is when the cleaner comes in lol... only once a fortnight and I do the rest of the time but it is a help xx
 

Mel-123

New member
Jul 8, 2022
2
0
Hello @Mel-123
A warm welcome to DTP

Maybe ask the Clinic to follow up any phone call with a letter or email so there's a record ... you'd think their systems would do this automatically, why not point this out to them! ... I doubt any of us would make such an error

Despite that, you sound as though you are managing to make other key arrangements ... I suspect you've thought of LPAs for both your mum and dad too

Now you've joined us here, do keep posting, maybe start a thread of your own with anything that's on your mind
Thanks. Yes I contacted the memory clinic and politely suggested they review their processes. We have an LPA in place for mum, didn’t think of doing one for dad, but it does make sense to do so. 😀
 

Jakesterblack

Registered User
May 20, 2022
16
0
That is exactly what happens with dad. He still manages to go out on a Tuesday with a couple of friends and that is when the cleaner comes in lol... only once a fortnight and I do the rest of the time but it is a help xx
Just back in work after clinic appointment this morning, wasn't great start mum didn't want to go eventually got there late and i spoke to doc for nearly an hour myself then mum and doc and me chatted, she has diagnosed her with alzheimers she told mum and she cried and held my hand.. but within minutes the whole conversation was forgotten, they will start her on meds. I am still in same situation with regard to help as mum will not accept it BUT at least we have a formal diagnosis now and the ball is rolling so to speak. I took mum home, made her tea, toast etc and left to come into the office and said I'll go down tonight and write it all down for her .....
 

SERENA50

Registered User
Jan 17, 2018
157
0
Just back in work after clinic appointment this morning, wasn't great start mum didn't want to go eventually got there late and i spoke to doc for nearly an hour myself then mum and doc and me chatted, she has diagnosed her with alzheimers she told mum and she cried and held my hand.. but within minutes the whole conversation was forgotten, they will start her on meds. I am still in same situation with regard to help as mum will not accept it BUT at least we have a formal diagnosis now and the ball is rolling so to speak. I took mum home, made her tea, toast etc and left to come into the office and said I'll go down tonight and write it all down for her .....
😊 I kind of think that must be good news in some way. A diagnosis may be useful in terms of access services and if there is some medication that can alleviate some of the things your mum experiences then that is a positive, I try and find a small positive in things somewhere.

Dad faces a three day lumbar puncture in hospital and if no improvement we think they will say brain atrophy/mild cognitive impairment basically a dementia diagnosis but if the say yes some improvement they may or may not offer a stent but the brain things well the damage is done that won't be reversible. His mobility may improve we don't know. It is all vague until we get to those stages. He like your mum had forgotten most of what had been said, I explained the stent again in very simple terms but I know that will more than likely been forgotten.

You could argue everything we do now would have to be paid for ie care basically, feels like you are on that road and ever so slowly getting nearer to the traffic lights and the junction. Dad won't even have the assisted bin collection service insists which is free and would make things easier for everyone ( my sibling has to go and put it out the correct bin lol) , although he fell not so long ago, he insists on his routine of bin out and bin back in. Just where is mind is I guess he can't stop the routine. Let us know how things go.
 

Jakesterblack

Registered User
May 20, 2022
16
0
😊 I kind of think that must be good news in some way. A diagnosis may be useful in terms of access services and if there is some medication that can alleviate some of the things your mum experiences then that is a positive, I try and find a small positive in things somewhere.

Dad faces a three day lumbar puncture in hospital and if no improvement we think they will say brain atrophy/mild cognitive impairment basically a dementia diagnosis but if the say yes some improvement they may or may not offer a stent but the brain things well the damage is done that won't be reversible. His mobility may improve we don't know. It is all vague until we get to those stages. He like your mum had forgotten most of what had been said, I explained the stent again in very simple terms but I know that will more than likely been forgotten.

You could argue everything we do now would have to be paid for ie care basically, feels like you are on that road and ever so slowly getting nearer to the traffic lights and the junction. Dad won't even have the assisted bin collection service insists which is free and would make things easier for everyone ( my sibling has to go and put it out the correct bin lol) , although he fell not so long ago, he insists on his routine of bin out and bin back in. Just where is mind is I guess he can't stop the routine. Let us know how things go.
He sounds like mum very set in their ways and their way or nothing.... I hope you get a bit further forward also. I wrote everything down for mum and tried to explain last night but it's exhausting and i think just tell her what i have to and nothing extra as she won't retain it anyway. I told her last night i can't go down every night and every weekend both days, i can pop in Sat and take her out Sunday but i need some time to do my things as well and some nights i work late her reply was that's fine i don't need any help with anything i manage everything on my own... i just said ok and left it at that... i need to do it - if she won't accept cleaner, carer etc i have a limit even though i still feel guilty it has to be done
 

Muttimuggle

Registered User
Dec 28, 2021
334
0
I think guilt is absolutely inevitable.....no matter what you do. I struggle with it all the time with guilt. My mother can be quite willful too about what she wants and what she doesn't want but I try to draw myself back for my own sanity. As things get harder then more neediness shows up and then things can change. When Social Services get on board you can get that recommendation for Care visits from them and your mother might accept, or at least they will give you confidence in your own convictions - that sort of understanding and recognition helped me to be firmer with my mother. As your Mum's main carer it is essential that you maintain as much sanity as possible. It all must be hard for you with your job and a sick sister too. Your wellbeing is wrapped up with your mother's wellbeing. Both sides of this relationship must work together so do not negate your own needs.
 

Jakesterblack

Registered User
May 20, 2022
16
0
tH
I think guilt is absolutely inevitable.....no matter what you do. I struggle with it all the time with guilt. My mother can be quite willful too about what she wants and what she doesn't want but I try to draw myself back for my own sanity. As things get harder then more neediness shows up and then things can change. When Social Services get on board you can get that recommendation for Care visits from them and your mother might accept, or at least they will give you confidence in your own convictions - that sort of understanding and recognition helped me to be firmer with my mother. As your Mum's main carer it is essential that you maintain as much sanity as possible. It all must be hard for you with your job and a sick sister too. Your wellbeing is wrapped up with your mother's wellbeing. Both sides of this relationship must work together so do not negate your own needs.
Thanks. I'm doing my best, not going down tonight just phoned her to check she's ok she can't really hear on the phone but said she was fine. Going to gym and having a night off. I know what you mean about drawing back for your own sanity. We definitely have to do it. I got to the point with mum that my whole life revolved round her and couldn't do things after work because i had to go down there, limited at weekends because i had to go to her house and clean or take her out. I'm taking her out every second weekend now and having one off to do my own things at home .