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Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
Welcome to Talking Point - introduce yourself here
- Thread starter Mark_W
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My parents live with me, my husband and son. They recently moved in with us which was their decision as they are in their 80s and needed help. My father has been very forgetful for a while but the shock of moving and leaving his home seems to have exacerbated everything. We are awaiting an appointment to visit the Memory Clinic. He is very paranoid, short term memory not good, as soon as he goes to bed is in tears and is very angry and aggressive verbally with my mother. He wakes in the early hours and gets my mother up and shouts for several hours every night. He tells us we are terrible for taking him to the doctors to try to prove he is "insane." Everything seems to be twisted. Am really struggling, I love my father so much. I dont know how to help/support him and my mum who is bearing the brunt of his behaviour. The doctor put dad on anti depressants as he was so depressed (this has helped his mood during the day) and he said there is no more he can do unless his depression gets worse he tested his memory which he has concerns about and referred us to the memory clinic which could take two months or so.
Am sorry this seems like I am rambling just feeling desperate today
Am sorry this seems like I am rambling just feeling desperate today
Hello @ali.norfolk. Welcome to Talking Point. I hope you will feel you've come to the right place.
When I read your post, you could have been talking about my husband. We relocated from the north west to the south east to live near our son and the move caused so much disorientation for my husband he reacted in exactly the same way your father has. This was in spite of termly visits over a period of ten years to see out grandchildren, my husband being familiar with the area and really wanting to move.
He was also treated for depression for a year before a brain scan resulted in a diagnosis of Alzheimers.
I do hope you get some answers soon. We also had to wait for appointments and if your concern increases I would just give the memory clinic a gentle nudge to let them know your concerns are increasing.
Please start your own Thread in the sub forum Memory concerns and seeking a diagnosis
https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
All replies to your concerns will be under one heading and so much easier for you to find.
When I read your post, you could have been talking about my husband. We relocated from the north west to the south east to live near our son and the move caused so much disorientation for my husband he reacted in exactly the same way your father has. This was in spite of termly visits over a period of ten years to see out grandchildren, my husband being familiar with the area and really wanting to move.
He was also treated for depression for a year before a brain scan resulted in a diagnosis of Alzheimers.
I do hope you get some answers soon. We also had to wait for appointments and if your concern increases I would just give the memory clinic a gentle nudge to let them know your concerns are increasing.
Please start your own Thread in the sub forum Memory concerns and seeking a diagnosis
https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
All replies to your concerns will be under one heading and so much easier for you to find.
Hello. I care for my 71 year old mum who was diagnosed with Alzheimer’s March 2017 although she has shown more symptoms of vascular dementia than Alzheimer’s.
She relies on me for so much and I do struggle with fitting everything in as I work.
Last year I took her to Italy as she really wanted to see the Cinque Terre. It was hard work but we both had a wonderful time. Roll on one year and Mum has deteriorated quite a bit but still insists there is nothing wrong with her. She keeps asking me when are we going to Germany. She used to love organising trips to the Christmas markets in Germany and I said to her earlier in the year that I would take her but I’m not sure where to start to even find somewhere that would be ok with having someone with Alzheimer’s stay especially as she is becoming incontinent (mostly at night). Any help would be very much appreciated as I feel this would be the last holiday I could give my mum so want to make it special. X
She relies on me for so much and I do struggle with fitting everything in as I work.
Last year I took her to Italy as she really wanted to see the Cinque Terre. It was hard work but we both had a wonderful time. Roll on one year and Mum has deteriorated quite a bit but still insists there is nothing wrong with her. She keeps asking me when are we going to Germany. She used to love organising trips to the Christmas markets in Germany and I said to her earlier in the year that I would take her but I’m not sure where to start to even find somewhere that would be ok with having someone with Alzheimer’s stay especially as she is becoming incontinent (mostly at night). Any help would be very much appreciated as I feel this would be the last holiday I could give my mum so want to make it special. X
Hi @Cakelady and welcome to Talking Point.
Im glad that you and your mum are doing things together while you can and going on holiday is a lovely idea. Im afraid this question is not one of the usual ones and I think that you would be better off posting it under the "I care for someone with dementia" section as more people will see it there and you are more likely to find people who can offer advice.
Heres a link to that section
https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
Im glad that you and your mum are doing things together while you can and going on holiday is a lovely idea. Im afraid this question is not one of the usual ones and I think that you would be better off posting it under the "I care for someone with dementia" section as more people will see it there and you are more likely to find people who can offer advice.
Heres a link to that section
https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
I have replied on your new thread, although I don’t know how helpful the reply will be to you.
Hello. I’m Ros and I’m new to the forum. My Dad, aged 73, was diagnosed with mild vascular dementia in February, although in hindsight the symptoms were evident long before that. I joined the forum because I have lots of questions about how we should be interacting with him so that he and Mum can live as well as is possible. At the moment, in the morning he spends a long time, sometimes over an hour, going in and out of the bathroom instead of having an hour. As far as I can tell he’s unaware of this and I don’t know if we should point it out to him. In fact, should we be pointing out any strange behaviour or just letting it go? He’s also stopped helping out around the house - do we just accept that certain habits disappear should we coach him to continue? Any advice gratefully received.
Hello @Ros Clarke, you are welcome here and I hope you find the forum to be a friendly and supportive place.
Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.
With regard to the new behaviours I have found it best to leave well alone as long as no harm/damage is being done.
As to tasks around the house, I think it's often a case that the tasks have become too complex and the routine timetable has been lost. I perform the more complex tasks around the house but let my wife contribute where she can - an example would be that I use the laundry equipment but let my wife hang/put away the laundered/dried clothing etc.
Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.
With regard to the new behaviours I have found it best to leave well alone as long as no harm/damage is being done.
As to tasks around the house, I think it's often a case that the tasks have become too complex and the routine timetable has been lost. I perform the more complex tasks around the house but let my wife contribute where she can - an example would be that I use the laundry equipment but let my wife hang/put away the laundered/dried clothing etc.
Hi my Mum was diagnosed about 5 years ago with Alzheimer's and we have noticed a rapid decline in her short term memory. Poor Dad is at his wits end as the love of his life has become argumentative and nasty tempered. She knows we treat her differently and constantly argued with him about long forgotten (by him) differences and imagined ( by her) new slights she tells us off constantly for treating her like a parcel and not letting her have a car. I joined to get advice should we explain every time that she is not just getting older but has a memory problem that means we have to watch her and can't let her drive . It's so sad my lovely mum is becoming a stranger. Anyone who has been through this and had any advice please reply we don't know what to do
Welcome to TP @HEE
You may find this thread helpful https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Hi,I was diagnosed with mixed dementia(vascular and Alzheimer’s) a few months ago.of course it was a shock,but it explained so many things when on occasion I thought I was going mad.im just taking it one day at a time now,it’s so difficult though,if I had a broken arm or leg,people could see you have something wrong with you,but when it’s a mental problem,it’s not so easy.im not the same outgoing person I used to be,which is hard to deal with.but I’m lucky I have wonderful support from lots of areas,so hugs to all carers and especially to everyone with dementia.
Hullo and welcome to TP, @CelticGhirl53. I'm sorry you have to deal with a diagnosis of dementia and all that brings. You will certainly get plenty of good support here from carers and from people with dementia.
If you are in England or Wales you may find some local support groups or memory cafes on https://www.alzheimers.org.uk/get-support/your-support-services/activity-groups
If you are in England or Wales you may find some local support groups or memory cafes on https://www.alzheimers.org.uk/get-support/your-support-services/activity-groups
Hello @CelticGhirl53, welcome to the forum from me too. I look forward to seeing your posts in the future.
Do have a look around the site as there is a lot of information here. A glance in the sub-forum that can be reached by clicking this link may be of interest https://forum.alzheimers.org.uk/forums/i-have-dementia.56/
Do have a look around the site as there is a lot of information here. A glance in the sub-forum that can be reached by clicking this link may be of interest https://forum.alzheimers.org.uk/forums/i-have-dementia.56/
Hello @Sheebee, welcome to the forum from me too.
I see you've had a good look around the threads for questions and answers . When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.
I look forward to seeing you on the forum.
I see you've had a good look around the threads for questions and answers . When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.
I look forward to seeing you on the forum.
Hi - thank you for accepting me. My husband aged 60 has just been diagnosed with fontotemporal dementia. At the moment I am broken hearted, angry and frightened. I have no specific questions at the moment but I know the road ahead if going to be tough and lonely. I just wanted to find people who understand and can perhaps help with advice in the future.Thank you
They could, especially if they wanted to please the person, get their approval. A kind of host mode.
warmest, Kindred.
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