• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Welcome to Talking Point - introduce yourself here

Status
Not open for further replies.

bobmacwos

Registered User
Jun 3, 2018
20
hi all
i am new to you all
i have been diagnosed recently with mixed dementia i.e alzheimers and vasceulor type
my mum bless her passed away with parkinisons and alzhemers 3 years ago and her mum had it too and a cousin had it
so appears to run in the family
i have depression and anxeity and docs said thats why i had bad memmory but my therapist and my locum doc agreedit could be more than that
so i had ecg and blood tests and mri scan and finally been diagnosed
so now i know
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,163
Yorkshire
hello Bob
a warm welcome to TP
I am really glad you came across the site and have joined this supportive community
you must be reeling a bit right now - rest assured members here are understanding and knowledgeable, so post with anything that's on your mind and folk will respond
when you're ready, maybe start your own thread and others will join you for a chat
best wishes
 

M&M2805

New member
May 31, 2018
6
Hi I am new to this site and am feeling overwhelmed with everything at the moment.
My Husband is just 62, and has been having memory and other problems problems for the past few years, he was referred to the UCLH in London about 18months ago, he has undergone numerous cognitive tests, MRIs, Blood Tests and a Lumber Punch. We are going tomorrow for his diagnosis, and I am feeling turned upside down and inside out with emotion.
I have made a list of questions that I think are relevant but was wondering if anyone can tell me what we can expect.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,786
leicester
Hi and welcome to TP @M&M2805
I realize you are in a very difficult situation, one of which I personally have no understanding, as far as I can see you have done everything that we here on TP would have suggested.
I’m glad you have a list of questions because I’m sure like most of us you will not remember everything on the day.
Please keep posting so we can support you
 

Vicxc

Registered User
Nov 27, 2016
6
Hello I'm new here, my mum was finally diagnosed last August,although has has signs for 13 years. She will not accept the diagnosis, and maintains she has anxiety. She still lives in her own home, although she isn't managing. She doesn't eat or drink, she doesn't clean or wash clothes. She goes to shop and buys dog food, and asks people directions to her home. She has a week of planned activities, with myself and sisters, everyday, although she claims she rarely see' s any of us. I have built a room within my home for her, but changes her mind 2/3 times daily. She in her mind doesn't have anything wrong with her. Unfortunately my sister's and I are agreed we will just have to continue the habit until she hits crisis. It's sad to watch, but very very frustrating. She says she doesn't need to live with me, but rings up to 20 times a day even when I've seen her, she has no recollection of this. Her memory is 3 minutes long at its best. I know I am not alone, and would really like the support of others here.
 

M&M2805

New member
May 31, 2018
6
Thank You, nellbelles, I will keep posting as I am feeling as though I am alone with this, our friends have already stopped visiting, save for one old friend but who lives miles away and my family have their own families and jobs so it's just a call from them. It's nice to know that there are people on here who will understand and support.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,786
leicester
Hello and welcome to TP @Vicxc
I am glad that you and your sister are in agreement on the care for your Mum, it’s often the case that this not so.

I hope if a crisis arises it is a small one and is just the catalyst you need for Mum’s care.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,163
Yorkshire
hello @Vicxc
posting on TP will certainly gain you support from the members here - maybe start your own thread when you are ready

your family sound to be looking after your mum really well - I wonder, though, whether you have contacted her Local Authority Adult Services to arrange an assessment of her care needs - this would get her known to Social Services and a care package could include home care visits, some days at a day care centre, respite and a visit to her home by an OT to suggest useful aids and adaptions - this would take some of the pressure off family carers

if she has little savings/income the LA will at least part fund the care fees, and while she lives in her own home it does not form part of any financial assessment
 

Malteser54

New member
Jun 6, 2018
6
Hi I am new to the forum. My dad (89) was diagnosed about five years ago with Alzheimer's as well as prostate cancer. My mum (88) has been caring for him at home since then but, following the long winter months and some health issues of her own, she agreed with my two brothers and myself that some respite care was urgently needed. Originally, dad went to a care home for two weeks (at the beginning of May), but he is still there and mum has now made the decision to sell the family home. Since dad left we suddenly realised just how weak and vulnerable mum seemed and we are now looking at sheltered accommodation for her once the sale has gone through. This has all happened with seemingly lightning speed! Dad had a few settling-in issues, such as refusing to wash and occasional violent outbursts, but the staff have handled these matters well so far.
 

karaokePete

Registered User
Jul 23, 2017
5,553
N Ireland
Hello @Malteser54, you are welcome here and I hope you find the forum a friendly and supportive place.
Do have a good look around the site as it is a goldmine for info and don't be afraid to start your own thread if you have a specific question or just wish to vent feelings.
A good place to start for general info is the list of Factsheets and you can find this by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
 

nellbelles

Volunteer Host
Nov 6, 2008
8,786
leicester
Hi @Malteser54 a warm welcome from me also, my husband went into respite care and he stayed, I suspect that the family carer goes on until they hit breaking point.
I hope you can settle your Mum into new accommodation and that you can then have so quality time with them both..
 

Jezzer

Registered User
Jun 12, 2016
984
Lincoln, UK
Thank You, nellbelles, I will keep posting as I am feeling as though I am alone with this, our friends have already stopped visiting, save for one old friend but who lives miles away and my family have their own families and jobs so it's just a call from them. It's nice to know that there are people on here who will understand and support.
Hi there @M&M2805 So pleased you have posted here on TP. It has been, and still is, a Godsend. You are most definitely not alone and you will receive wonderful support here. A great idea to make a list. Not sure who you are seeing but hopefully all your questions will be answered. Please let us know how things go. With very Best Wishes.
 

M&M2805

New member
May 31, 2018
6
Hi there @M&M2805 So pleased you have posted here on TP. It has been, and still is, a Godsend. You are most definitely not alone and you will receive wonderful support here. A great idea to make a list. Not sure who you are seeing but hopefully all your questions will be answered. Please let us know how things go. With very Best Wishes.
Hi Jezza, my husband received his diagnosis on Monday. He has been diagnosed with, (in the consultants words) a rare form of Alzheimer's, he said it's rare in that it affects the front and middle of his brain, he gave it a name and I am sure he said its cortiobascal degeneration. He asked questions like is my husband having difficulty swallowing etc, which he doesn't, but he said we will get a letter explaining what it's called etc.
To be honest I did google it and I am in shock by what I have read. My husband is more upset about the consultant telling him, in his opinion, my husband shouldn't drive until DVLA have carried out an assessment.
We were then passed to a cognitive team nurse who has said my husband is entitled to PIP and a discount on our council tax. It's a lot to take in for me at the moment. I am going to call Alzheimer's Uk to try and get some help on what I do next. Sorry it's such a long reply but I now seem to have so many things to say. One further this Can I please ask if this is the correct forum to stay on now he has a diagnosis or do I need to go onto another forum?
 

karaokePete

Registered User
Jul 23, 2017
5,553
N Ireland
Hello @M&M2805, welcome to the forum from me too.
Here is a link to the part of this forum that is appropriate to you https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/

There is a factsheet about the rarer forms of dementia and here is a link to it, I hope it helps https://www.alzheimers.org.uk/sites...nloads/factsheet_rarer_causes_of_dementia.pdf

If you feel a chat with an expert would be useful to you the help line details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
 

canary

Registered User
Feb 25, 2014
12,860
South coast
Hello @M&M2805 and welcome from me too.
No you dont have to move to another forum if you dont want to. Although this is called the Alzheimers Society it covers all types of dementia. My OH has Frontotemporal Dementia which affects the front and temporal lobes of the brain and is related to Corticobasal Degeneration (CBD). CBD usually affects movement very early on and there is often problems with co-ordination, walking, tremor and speech/swallowing. Not everyone gets all of these things, though
 

M&M2805

New member
May 31, 2018
6
Thank you so much for the links and contact numbers, I will give the helpline a call.
Can I ask Canary, your husbands dementia is related to Corticobasal Degeneration and how he is with his symptoms. My Husbands diagnosis has taken almost 2 years of MRIs, he has had 3 in total since 2015, plus cognitive tests and finally a lumber punch. When we saw the consultant on Monday he was asking things like does my husband get stiffness in his arms or legs, and does he still get jerky movements while he is asleep (he used to get these very violent jerky movements every night) strangely they have lessened ever since my husband stopped working last December and now it's mostly loss of confidence, confusion, repetitive behaviour. Oh and they took his pulse while feeling his arm?
 

Jezzer

Registered User
Jun 12, 2016
984
Lincoln, UK
Hi Jezza, my husband received his diagnosis on Monday. He has been diagnosed with, (in the consultants words) a rare form of Alzheimer's, he said it's rare in that it affects the front and middle of his brain, he gave it a name and I am sure he said its cortiobascal degeneration. He asked questions like is my husband having difficulty swallowing etc, which he doesn't, but he said we will get a letter explaining what it's called etc.
To be honest I did google it and I am in shock by what I have read. My husband is more upset about the consultant telling him, in his opinion, my husband shouldn't drive until DVLA have carried out an assessment.
We were then passed to a cognitive team nurse who has said my husband is entitled to PIP and a discount on our council tax. It's a lot to take in for me at the moment. I am going to call Alzheimer's Uk to try and get some help on what I do next. Sorry it's such a long reply but I now seem to have so many things to say. One further this Can I please ask if this is the correct forum to stay on now he has a diagnosis or do I need to go onto another forum?
Oh I'm so sorry. I have to say I hadn't heard of this form of Alzheimer's. There are so many different types aren't they? Please never apologise for a long post - it's absolutely fine. You must be reeling at the moment; you have so much to take in and so many questions. You are most certainly on the right forum and I'm so pleased to see you have received helpful responses from other members giving you useful contacts and information. Take care and please continue to use TP. You are amongst friends.
 

M&M2805

New member
May 31, 2018
6
Oh I'm so sorry. I have to say I hadn't heard of this form of Alzheimer's. There are so many different types aren't they? Please never apologise for a long post - it's absolutely fine. You must be reeling at the moment; you have so much to take in and so many questions. You are most certainly on the right forum and I'm so pleased to see you have received helpful responses from other members giving you useful contacts and information. Take care and please continue to use TP. You are amongst friends.
Thank you all so much. I feel (as I am sure you all must do) as though I am in a nightmare, I have been waking up and for a few minutes feel normal until I realise nothing is normal at the moment, but am glad I found this site, everyone is so kind and helpful.
 

canary

Registered User
Feb 25, 2014
12,860
South coast
Can I ask Canary, your husbands dementia is related to Corticobasal Degeneration and how he is with his symptoms.
My understanding is that FTD is on a sort of spectrum with CBD. He has typical FTD symptoms of volatile emotions, loss of abilities, difficulty with sequencing, loss of inhibitions and has made some truly awful decisions. He also has some motor problems - a very strange gait, hand tremor, loss of muscle mass and some difficulty with swallowing. That sounds worse that it appears - he can walk with a stick (although he is supposed to use a rollator outdoors) and I tend to cook slightly softer food - things like shepherds pie and casseroles. He also gets the jerking of his libs when he is asleep (Periodic Limb Movement Disorder). His main motor problem is his hand tremor and he cant do things like tie shoe laces or cut his nails and some days he cannot use cutlery. CBD was one of the things that his neurologist considered. He too has had MRIs, a PET scan and a SPECT scan, neuropsychology tests and a couple of lumber punctures
 

Saz28

New member
Jun 7, 2018
2
Hello my name is Sarah and my 86 year old mum has Alzheimer's, she was officially diagnosed November 2017 but we suspect she has been suffering for the last 5 or 6 years. Her condition was assessed as medium to severe. My father, sister and myself constantly ask ourselves if she had been diagnosed earlier, could we have got her help earlier. My mum was severely delusional and frequently physically and verbally aggressive to my father. She was assessed annually by a psychiatrist who maintained it was just "old age". My mum often could act as if everything was ok then would go home and the delusions and hallucinations would continue. My elder sister and I have had an extremely difficult time coping. Mum was finally sectioned under the mental health act after we intervened, which wasn't an easy decision to make and admitted to the hospital psychiatric unit for a period of assessment. During that time she struggled to find a balance of medication and it was very stressful for her and my family. I have nothing but praise for the support we have received but I find it quite frustrating when I read stories of people who have dementia or alzheimers but who are aware of it - my mother has no idea what is wrong, you could say the disease was too "far gone". I would be interested in hearing from other people whose loved ones were violent or aggressive as it has changed our lives and I have difficulty coping much of the time. It affects everything.
 
Status
Not open for further replies.