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Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Feb 21, 2018.
That is so true. Talking always helps.
I saw my doctor today thank you. My headaches are a cluster and my blood pressure is high. Is it a case of the chicken or the egg.
Hi , saying hello for the first time. I will try to summarise my situation-
My Mother is 84 and has Vascular Dementia. It has been pretty bad for 2 years and with hindsight, much longer.
She wont co operate with any full diagnosis, so this is what we are led to believe. It is ( I think) a fairly severe case which seems to be complicated by a personality disorder, or that is what we are told. The social services have been very good really, pretty supportive, so she has a basic care visit everyday (when she lets them in) but the carers just check on her and can't do anything helpful as she wont let them.
My sister and I live far away from her, she wont entertain the idea of leaving her flat and she refuses much help or intervention in her cluttered flat.
It seems her main issue is paranoia, which makes her very suspicious and unable to trust us, especially me- I am very aware that it's not unusual to turn against loved ones and she really seems to believe the things she accuses me of- so I try not to let it get me down.
We visit very regularly, as do my 2 daughters, we do what we can to ensure she is safe and has food, gets out ect. As seems usual in these circumstances, she does not care much about eating or personal hygiene. It is a tricky situation and not going to get better.
We briefly see the old her, but that is getting rarer. In the main she is angry, muddled and in a pretty anxious state, heartbreakingly upset a lot of the time too, but manages to put a good front on when required. She still gets out on the odd social engagement which her lovely friends try to arrange, but wont go to day centres or anything like that.
It's been a tough winter, hopefully Spring will help, but I think we only wait for the inevitable fall or something to occur which may take things to a different level.
Hello @ADP and welcome to Talking Point.
Yours is, unfortunately, a common story. My mum was the same. At least your mum allows the carers in - mum wouldnt allow them through the door! Eventually mum had a TIA and ended up in hospital - from there she went into a care home where she was very well looked after until her eventual death.
Im guessing that there will eventually be some sort of crisis with your mum too, so its good that you can keep an eye on her. Perhaps you could start looking at care homes and get an idea of where you would want her to go when the time comes.
I am Helen and I am here because my mother has dementia as well as being bipolar and some physical health issues.
She is in residential care and is experiencing delirium after emergency surgery. Hello to everyone - interested if anyone else has experienced sudden onset delirium after a traumatic event
I am caring for my soon to be 89 year old father. He and my mother still have their house and have been independent until last year. I live about 2 minutes away and they have a sitter every night from 9pm till 9am. My last surviving sibling, Ani, lives about an hour away. I retired last October to help with the shopping, doctor's appointments and to just be there. My father has yet to be diagnosed with Alzheimer's, even though he has been sun downing for over a year. I have many questions, too many, and I have no one to talk to that has been through this. It's not something everyone would understand or be comfortable with. Thanks for being here.
Sorry to hear that Helen. My father has it after being in the hospital..very disturbing for all involved. ;o(
Good morning and welcome to TP, @Marina61.
I'm glad you found somewhere to get support, it's half the battle for your parents to have a good support network already with yourself and overnight sitters. Caring is hard too, and we are here to help you with that one. Is your father awaiting an appointment with the memory clinic?
If you want to ask questions, I suggest starting a thread in "Memory concerns and seeking a diagnosis", from the list of forums on the home page. Simply click "post new thread", put in a short title, and ask or ramble away. Click on "create thread" at the bottom of the page, followed by "watch thread" in the top right corner if you want to be reminded of replies.
I hope any of that is helpful, I'm rambling a bit, and good luck.
This is my first ever link to a forum. My husband was diagnosed with Altzheimers approx 18 months ago but it had been apparent that something was wrong for at least 3 years prior to that. He has become progressively closed in on himself, having been a headteacher of a large secondary school and a mentor for failing schools, so a very intelligent man. Also a very good musician specifically organist. This is possibly the saddest reflection of his condition currently as he can't read the music quickly enough to play, and can't hold the rhythm of a piece. He struggles to understand the long term impact of the diagnosis, still thinking that if he tries hard enough he will get better.His own children are not taking any interest in his well-being. I feel that I am losing the man I love daily having come together 17 years ago. I have established the PoAs and he has had the DVLA annual assessment so can drive, but has lost confidence when once he was an enthusiastic good driver. My life has shrunk to the boundaries of his, and the loneliness becomes unbearable at times when people don't understand what we are dealing with. I think I am dealing with my own depression but can't afford to let go, as we would have nothing to eat and he relies and trusts only me.
Welcome to TP, @Stitchintime. I'm sorry your husband's condition has left you feeling isolated and depressed. I can relate to suffering depression and to family not understanding what is happening and not helping. Coming on here you will find plenty of support and won't feel so isolated I hope.
It is sad if he will only trust you, as I was going to suggest outside carers to take the burden off yourself. It would be best though if you speak to your GP about your battle with depression, as I left it until panic attacks took me in the supermarket.
The dementia helpline would be a good place to talk about your depression, if you feel the need the number is 0300 222 1122. It's open 9am - 8pm Monday to Wednesday, 9am - 5pm on Thursday and Friday, 10am - 4pm on Saturday and Sunday. You can also email them at email@example.com.
my husband has c.o.p.d and vascular dementia. i have been his carer for about 5 years but has recently been diagnosed with vas dem, i have seen it coming on for years.has good and bad days,but i dread the future.
This @marwood and welcome to Talking Point.
I'm sorry to read of your situation but I'm glad you found this forum.
Now that you've introduced yourself you might like to start your own discussion thread. You may receive more responses from other members, and also be able to use the discussion to share other information and keep other members updated on how things are going.
To start your own discussion:
1. Open up the area 'I Have a partner with dementia area - https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/
2. At the top, you'll see a button called 'Post New Thread' - click or tap on this.
3. Add a discussion title and below, add your message. Then click or tap the 'create thread' button.
Hi all - my mum (Elaine) was diagnosed with vascular dementia and Alzheimer's early in 2015. She still lives in her own home with her much loved cat, Cookie but lately she has shown a more rapid decline. As a result my sister and I have become involved with social services which frankly adds to our worries rather than lessens them.
We are trying to keep mum in her own home because all the advice we have received suggests this is the most stimulating and least restrictive environment for someone with dementia. It is not easy and social services are making life more difficult in terms of the level of support they will give and they seem desperate to stick mum in a residential home.
On a positive note mum has been given new medication which seems to have made a significant improvement to her speech and memory recall - it's a real blessing to visit her and have her tell you about her day.
It's not easy to watch a loved one fade away before your eyes and to feel so powerless to prevent that happening. I am shocked at the lack of understanding of dementia in society and the lack of imagination in dealing with those afflicted by this terrible illness. People with dementia are real people with real feelings and as such deserve a real chance in life. I feel it is a duty and privilege to strive for the best for my mum at every step of the journey.
Welcome to Talking Point @Mike Burrell. You are right there is a long way to go before there is the proper understanding and help in place for those with dementia.
Talking Point is a wonderful forum for help, support and friendship from those who deal with dementia every day. You will always find someone to help and advise or just to listen to you.
When you are ready to post use the following section of the forum https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/. It’s the place where more members will see your post and be able to respond to you. Nothing is off limits, we have all experienced at some time the different behaviours that dementia can bring.
Look forward to seeing you post when you are ready.
Hi, I'm ScarletPimple and I live with someone with Dementia. I have no authority as she does not acknowledge that she has dementia, so the doctor can't tell me anything.
One of the points in 'help for carers' says make sure they have their hearing and eyesight checked regularly, but I can't do that, as she's already refused a hearing aid and an eye operation to remove cataracts and just keeps polishing her glasses.
I don't know what to do. I can't help her and she won't let anyone else help her either. And her behaviour is getting more worrying.
She is currently taking the back door key out of the lock and leaving the back door open and accusing anybody else (she means me) of taking the key. Twice now today it's been in her own pocket.
We can't lock the back door without this key.
I don't know what to do.
It feels so unsafe knowing we'll have the back door open all night.
Hello @ScarletPimple, welcome to TP, you will find this a friendly, informative and supportive place.
Do take time to look around the site but may I suggest that you start your own separate thread as more people are likely to see it and reply to you.
It's difficult as people with dementia can be their own worst enemy when they won't co-operate and thereby get the help they need. Sometimes it is necessary to wait for a crisis to develop before they accept help. The unfortunate thing is that they are struggling to hold on to as much of themselves as possible because they know something is wrong without knowing what it is.
I find it is necessary to take firm control, so in the case of the back door key I would just take it into my possession, or get a copy cut, and use it appropriately. Just say you don't know where it is and need to get another one cut and hope they forget what you have said - if they're like my wife the forgetting will happen very quickly!
It's often impossible to reason with a person with dementia and you may find the following thread useful in adapting how you communicate. Just click on the following link:-
If you would like to actually talk to an AS expert 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
Hello I don't really know how to start really. My mum was given the terrible news that she has vascular Alzheimer's early stage middle of last year. After being in and out of hospital including a mental health hospital they told my dad who is 68 mum had vascular Alzheimer's. We was all devastated by the news as you can imagen. My dad is my mum's main career sorry for got to mention my mum is 65 years old. The problem I have is my dad keeps saying one min it's vascular dementia then he says she has vascular Alzheimer's so I don't really know which one she has. I can't get any information from my mum's Dr as I'm not her next of kin and because of data protection. My dad is getting confused about things and is asking me what the difference is between the two types. They have a crisis team that comes to see them every now and then. I go as often as I can with work and distance. I'm so happy to have found this site and to hopefully get some help my self so I can help my dad and mum and hopefully people in this group to as my knowledge of this horrible disease gets better.
Welcome to TP Sarah, sorry you’ve had to join us.
I’m not sure an actual label is important, the Alzheimer’s website does have information about both types of dementia both Alzheimer’s and vascular, some people have mixed. Read through some posts, then ask your questions, day or night someone’s around.
Thank You Demartin Im Just Trying To Get To Grips With The Site At The Min. Im Just Sorry Any Of Us Have To Deal With Dementia Etc.