After such a struggle we finally have a first assessment at memory clinic tomorrow for my mum, she is only 59, so we struggled to get people to believe us for 2 years. I’m a student nurse myself and about to qualify and know my mum is showing signs of dementia. I would be grateful of any advice on the first assessment, I would really like to speak to the person without my mum, is this an option? Just really need them to take us seriously xx
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- Thread starter Shell0269
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First, sorry for your circumstances; there's nothing fair about any dementia, but the younger it starts, the less fair it seems.
Memory clinic teams are, sadly, all too familiar with these tricky situations, so I wouldn't worry too much about it. When I went with my mother to her first appointment I thought it would be tense (Mum was, shall we say, uncooperative and only going to prove me wrong!) so I wrote to the specialist beforehand, giving examples of why I'd "encouraged" Mum to see him. He made it clear at the appointment that he'd read my letter, but didn't refer to it in front of Mum (it was her appointment, after all, not mine). However she did so poorly at the questions he asked her that there was never going to be any doubts, so I don't think my letter made much difference.
In your position I'd put a short list of your main concerns down on paper that the specialist can quickly scan through. Handing it over in front of your mother might be a bit awkward, but I suppose you could quietly hand it to reception when you get there, and ask them if they could make sure it gets to the appropriate person before you go in. That way you don't have to worry about trying to have a private word.
Best of luck to you all getting through today. It's a tough day to face, but it's the start of a diagnosis, and that opens up doors, even though they're doors nobody ever wanted to have to open. My mother was heartbroken by her first assessment and the rather blunt prospects laid out for her. But there's no easy way to do these things, and I was relieved -- in the worst possible way! -- to know we were starting down the appropriate path to manage her situation.
Memory clinic teams are, sadly, all too familiar with these tricky situations, so I wouldn't worry too much about it. When I went with my mother to her first appointment I thought it would be tense (Mum was, shall we say, uncooperative and only going to prove me wrong!) so I wrote to the specialist beforehand, giving examples of why I'd "encouraged" Mum to see him. He made it clear at the appointment that he'd read my letter, but didn't refer to it in front of Mum (it was her appointment, after all, not mine). However she did so poorly at the questions he asked her that there was never going to be any doubts, so I don't think my letter made much difference.
In your position I'd put a short list of your main concerns down on paper that the specialist can quickly scan through. Handing it over in front of your mother might be a bit awkward, but I suppose you could quietly hand it to reception when you get there, and ask them if they could make sure it gets to the appropriate person before you go in. That way you don't have to worry about trying to have a private word.
Best of luck to you all getting through today. It's a tough day to face, but it's the start of a diagnosis, and that opens up doors, even though they're doors nobody ever wanted to have to open. My mother was heartbroken by her first assessment and the rather blunt prospects laid out for her. But there's no easy way to do these things, and I was relieved -- in the worst possible way! -- to know we were starting down the appropriate path to manage her situation.
Hi @Shell0269 If your mum was referred to the memory clinic by her GP then I am sure that they will take it seriously. My dad's first assessment was in his home. The memory clinic nurse attended and gave dad a memory test while I sat in the conservatory. Before his test she spoke to us both together and she was really lovely and professional. I think dad was a bit taken with her and he was his usual charming self. She asked him questions about his memory and of course he said it was all fine and she asked me much the same questions and I gave her different answers to dad's which surprised him. I remember he said that he had lived in his home for 5 years when in fact it was 22
I was like you and wanted to get her alone but it was not possible and not necessary in the end.
You are not likely to get the result at the first assessment as they may want to do other tests (dad had a head scan) but when you do get the result they are likely to tell your mum straight to her face. I think it is to do with patients right to know. Dad accepted his result until she had gone and then said that she was talking rubbish as his memory was normal for someone of his age (this seems to be a normal reaction) We have not talked about it since as he has forgotten and I never mention dementia or alzheimers because dad doesn't have either.
Dad was 87 then and I knew that he had alzheimers for at least six years but it had got much worse. I realise that your mum is still young and that is very hard but just go to the assessment and go with the flow, they know what they are doing and are bound to ask you questions as well.
Do come back here and let us know how your mum gets on. This forum is an amazing place for getting help and support or even if you just want to let of some steam.
I wish you and your mum good luck tomorrow and hope that her assessment goes well.
I was like you and wanted to get her alone but it was not possible and not necessary in the end.
You are not likely to get the result at the first assessment as they may want to do other tests (dad had a head scan) but when you do get the result they are likely to tell your mum straight to her face. I think it is to do with patients right to know. Dad accepted his result until she had gone and then said that she was talking rubbish as his memory was normal for someone of his age (this seems to be a normal reaction) We have not talked about it since as he has forgotten and I never mention dementia or alzheimers because dad doesn't have either.
Dad was 87 then and I knew that he had alzheimers for at least six years but it had got much worse. I realise that your mum is still young and that is very hard but just go to the assessment and go with the flow, they know what they are doing and are bound to ask you questions as well.
Do come back here and let us know how your mum gets on. This forum is an amazing place for getting help and support or even if you just want to let of some steam.
I wish you and your mum good luck tomorrow and hope that her assessment goes well.
Good tip from Normaleila above. OH had been seen twice by locum consultants, who conducted the memory tests while I sat in the waiting room, brought him back out and issued me with a list of things I was to see that OH did daily - e.g. take an hours walk, read a newspaper, do the crossword or sudoku, play scrabble or chess, etc. Finally I was told that he must be accompanied at all times and never left home alone. Diagnosis sent to GP = Mild Cognitive Impairment.
6 months later, we saw a new permanent Consultant Dr P, who was wonderful. I sat in on the consultation, sitting just behind OH and after every question to OH, Consultant looked to see if I was nodding or shaking my head. I was astonished when the very next day, DrP turned up on the doorstep at our home accompanied by a nurse, who immediately asked OH to show her round the garden. DrP explained that he had had a lightbulb moment during the consultation when he realised that I was holding back, unable to say what was troubling me in front of (or behind) OH. Also well aware that OH was presenting in Hosting mode. Hence his visit to get the true story.
Long story short, after a brain scan we got a formal diagnosis, 6 months of support via weekly days at specialist unit, referral to SW for care assesment. higher rate AA. etc. Best of all, Dr P instigated a protocol that included a private chat with the main carer or spouse at all future appointments for everyone.
6 months later, we saw a new permanent Consultant Dr P, who was wonderful. I sat in on the consultation, sitting just behind OH and after every question to OH, Consultant looked to see if I was nodding or shaking my head. I was astonished when the very next day, DrP turned up on the doorstep at our home accompanied by a nurse, who immediately asked OH to show her round the garden. DrP explained that he had had a lightbulb moment during the consultation when he realised that I was holding back, unable to say what was troubling me in front of (or behind) OH. Also well aware that OH was presenting in Hosting mode. Hence his visit to get the true story.
Long story short, after a brain scan we got a formal diagnosis, 6 months of support via weekly days at specialist unit, referral to SW for care assesment. higher rate AA. etc. Best of all, Dr P instigated a protocol that included a private chat with the main carer or spouse at all future appointments for everyone.
Right from the first appointment with the consultant at the Memory Clinic I was asked to leave the room for a few minutes while she spoke to my husband alone. He was then asked if it was alright if she spoke to me alone for a few minutes and he politely agreed. After a few visits she just spoke to us both as by that time it was pretty obvious John couldnt process our conversations.
Over the years though I have at times written down concerns and sent them to her so she has a pretty clear picture of what s going on. Recently I let her know I wouldn't bring him to any more appointments as it was becoming too tiring for him. I was astonished to receive a letter of thanks and an offer to do a home visit if I ever felt one was needed. See the NHS - I think it's wonderful.
Over the years though I have at times written down concerns and sent them to her so she has a pretty clear picture of what s going on. Recently I let her know I wouldn't bring him to any more appointments as it was becoming too tiring for him. I was astonished to receive a letter of thanks and an offer to do a home visit if I ever felt one was needed. See the NHS - I think it's wonderful.
All I can add to the superb advice already given, is to be prepared to speak up, if that means contradicting mother so be it.
She will almost certainly go into "Hostess mode" to appear normal, the only way to the best Care, is for the truth to come out.
I was accused of "Letting the cat out of the bag" when my father was assessed, but it got him the help he needed, not that he would admit it!
Bod
She will almost certainly go into "Hostess mode" to appear normal, the only way to the best Care, is for the truth to come out.
I was accused of "Letting the cat out of the bag" when my father was assessed, but it got him the help he needed, not that he would admit it!
Bod
Thank you all for your advice, we have been to the appointment. They did ask all the questions in front of mum, I just told them everything that has been going on. It was hard as it felt like I was going against everything my mum was saying, but in order to get the help for her I need to tell the everything. My mum was getting quite frustrated but Iv come out feeling relieved that someone is seeing what i am seeing. We have to wait for a phone call and mum might have to have a MRI but I finally feel like we are getting somewhere.
Hi again @Shell0269 You did well and now you can try to relax knowing that you have done your best. Dad had to have a head scan and he was as good as gold about it. In fact he was so quick that I had to go and check that he had actually had it done. He was in and out in about five minutes.
