How has dementia impacted you?

Margaret clapp

New member
Sep 1, 2018
7
I have Vascular dementia so it does affect me a lot. I have a Husband and Family but they do loose patience with me sometimes.
I am still at the stage where I can go out and about on my own but it has to be places I know.
I try and usually have a plan each day if I can and outreach to other People.
 

Jerry2648

Registered User
May 1, 2018
20
Fort Worth, TX/USA
@Cazzita @lovey11 @Countryboy thank you so much to each of you for sharing your stories, both positive and negative.

Please continue to share your stories below :)
For me, as a caregiver to my wife of 50 years, it has often affected me maybe more than her. Our family physician once told me that dementia affects the family more than the patient. The patient often does not remember what they said or did that might have hurt a family member emotionally. I realize she IS affected by this disease but it is often a passing thing. And she is content to lay on the couch or the bed all day, while I want to be out doing things, going places, interacting with people, etc. However, I cannot leave her alone for she gets anxious when I do.
Sorry this sounds like whining. But I do hate what this diseSe has done to her, me, and us.
 

AliceA

Registered User
May 27, 2016
2,807
So many positives and negatives.
I feel fortunate that we are an older couple so enjoyed some travel before becoming house/village bound.
We were late travellers as we were prevented when younger, but made up for it.
The negative is I have serious health issues plus age.
Frustrations with authorities have been balanced by the individual kindness of so many people.
I have learned so much about myself, my strengths and my weaknesses.
I have continued to learn to sort the wood from the trees, what really matters in life. Who matters in life.
I have studied the condition in the same way as I studied when younger.
This has been a positive, expanding my mind giving confidence to tackle issues.
What if this last phase had been different? Every phase has had it own challenges, this could be worse. Who knows, so many friends are single again. Younger friends succumbed to illness.
I have learned to let go of expectations, not look too far ahead.
I especially feel for younger people with dementia issues. It seems extra hard.
People on here have been a great positive, especially those who had suffered but still post to hold our hand. Izzy, Granny G, Loo and so many. This at a time to detach and move on, thank you
Thank you to TP where would I be without you all.
 

cumbria35

Registered User
Apr 24, 2017
65
I have just been reading some of these comments and agree with many of them. We were lucky that my husband was 80 when diagnosed with vascular dementia. The initial years were hard and we get by much better now. We are fortunate that we can still get out and about,albeit slowly as time goes on. We have some very good friends but one couple seem to need to keep away and involved with us which is sad. Family are very good too but I sometimes feel they are over protective and feel I am not capable of making decisions but I can see it from their point of view.

The negatives are that it is very hard to find official help, we tried to see an Occupational Therapist but our local Adult Services use Age UK instead. Not easy being asked what help you need, life is difficult enough being the one to make most of the daily decisions re finance etc. Thankfully we don’t have financial worries - yet. We have not seen the specialist doctor for 18 months and the nurse from the dementia unit has now,been reduced to one visit per year, we can contact them if need be. My husband is sociable and we go to a singing group which I too enjoy as we meet other people, he does not go to any other groups and is not bothered about that. He does like to go out even if just for a,coffee to,our local supermarket which is within his walking distance. I find it difficult to get out for a quick walk on my own and miss my walking group. Many people do not realise how this disease impacts on life on a daily basis. Thank goodness for good friends and neighbours and family but they live three hours away. Sorry to ramble on.
 

Frogmella

New member
Nov 4, 2018
2
I just wanted to say a huge thank you to everyone who has shared their stories, experiences, and comments so far. The deadline for this piece of work is Tuesday April 30th so if you would like to get involved, make sure you post on this thread before the deadline.

Thank you again :)
 

Annakey

Registered User
Oct 26, 2018
33
What I’ve Learned about Dementia

My wife and I are in our early 80's. My wife was diagnosed with AD in 2010. Initially it was devastating with a bleak future. That is until I discovered and read ‘Contented Dementia’ by Oliver James. This book taught me that there is something you can do to take away the fear and much can be done to maximise the patient’s quality of life. What follows is what I have learned on this journey.

Dementia is not a disease in itself.

Dementia is a word used to describe a group of symptoms. These can include the gradual loss of memory, communication skills and the ability to think and reason clearly.

Alzheimer's is a disease that causes dementia. It is probably the best-known cause of dementia, accounting for about two-thirds of cases in the elderly. About 500,000 people in the UK have Alzheimer's.

Other diseases can cause dementia. After Alzheimer's, the most common causes of dementia are vascular dementia, dementia with Lewy bodies and frontotemporal dementia.

My experience and research has to do with Alzheimer’s. Even with Alzheimer’s, symptoms vary from individual to individual.

What these conditions have in common is memory loss and the consequences of that.

However, memory loss is not necessarily an indication of dementia. When someone is suffering from memory problems, GPs will consider other possible causes before concluding whether the patient has dementia. There is a long list of things that can affect your memory that are NOT dementia;
  • loss, such as the death of someone, a divorce or job loss
  • nervous tension or worry
  • noise or other distractions
  • general medicines, particularly if you are taking more than four
  • overuse of alcohol
  • poor health
  • sadness and depression
  • side effects of sleeping pills or other sedatives
  • sleep deprivation
  • some infections, particularly in older people (chest infections and urine infections are notorious)
  • the menopause
  • thyroid disorders
  • too many things on your mind
  • vitamin B12 deficiency
  • ageing
Many of these are reversible. If the diagnosis is dementia, currently, there is no known cure and it will steadily decline.

To understand the effects of memory loss due to dementia, several analogies help: the brain acts like an onion; the outer layers are recent events such as what I had for breakfast; inner layers are early events such as childhood. As outer layers die and peel away, recent memories disappear and the inner layers (memories) become the present. A better analogy uses a photograph album. Every event is recorded as a picture comprising a fact (the image) and associated feeling (the frame). For someone with dementia, a photograph in which the facts of what just happened are not stored, although the associated feelings are stored. As time goes on there are more and more blank photographs. When someone asks us a direct question, we look in our photographic album for facts. This presents the person with dementia with a problem because all they see are blank photographs, causing distress and anxiety. Feelings become much more important than facts. They can remember that they were just upset, angry or frightened but don’t remember why.

How Memory loss impacts on day-to-day life
  • You cannot work things out
  • Frequently forgetting key dates, such as appointments or relatives' birthdays
  • Asking for things or for information over and over again
  • Forgetting what happened earlier in the day
  • Getting lost or wandering
  • Difficulties concentrating
  • Problems following conversations or TV programmes
  • Confusion
  • Spatial awareness, cupboards, rooms etc.
  • Sequences such as making a cup of tea or getting dressed cannot be remembered.
Strangely, the area of the brain associated with music is not affected.

As dementia progresses the patient’s behaviour - the things they say, do or don’t do - will surprise, or even shock. How we react to the inevitable annoyance, frustration, anger and stress this alarming behaviour causes will determine a) the patient’s rate of decline and b) both the patient’s and the carer’s well-being. If we follow our natural tendency and attempt to correct the patient’s behaviour, then the patient’s condition will go downhill fast, stress levels and despair will increase. Confinement to a nursing home will be sooner rather than later. It’s like trying to sail forward into a headwind, it gets you nowhere, you have to learn to tack.

When caring for someone with dementia it is important to recognise the profound difference between our own sense of reality and that of someone with dementia. We are aware of our surroundings (where things are), the seasons, the time of day, what is happening, who we are, who our friends and relatives are and what has happened recently. When our memory fails us, all of this current awareness disappears; we have a different reality based on our distant past. There is therefore no point in trying to bring this person into our reality, we have to learn how to understand their reality and interact accordingly.

Not knowing who you are, where you are, what you are doing here is very frightening - wanting to ‘go home’ is quite common. It’s only in later stages of the condition, or, if under the influence of psychotic drugs, are they unaware of this frightening state.

Given that the patient cannot change, the onus is on the carer to accept and adapt his/her reactions. This means controlling one’s own natural tendencies, emotions and reactions. To avoid causing distress to someone with dementia, there are several rules that are known to work:
  1. Do not ask direct questions such as “what did you have for lunch” - they won’t remember having had lunch.
  2. Listen and learn what interests them - base conversations on their world.
  3. Do not contradict or argue - always agree with everything they say.
While these seem simple rules, it is quite another matter to remember to apply them at all times.

Do not ask “Remember when…?” If they can’t remember, this can be a frustrating or painful experience.

Having to answer the same question several times can be frustrating, but repetition will happen. There is no benefit to showing your frustration to somebody with dementia. Saying ‘I've just told you that’ only reminds the person of their condition.

Keep sentences short and to the point. Long, complex sentences can be difficult to grasp for somebody with dementia. It’s difficult to process several ideas at once as cognitive abilities slow down, so it’s better to give directions or instructions one step at a time.

A dementia sufferer will often display childlike behaviour. Be careful not to chastise or respond like a parent or teacher as this can evoke bad memories and deny them their independence.

Avoiding red flags: as an example, a person living with dementia may forget about a past bereavement or ask for somebody who has passed away. Reminding them of a loved one’s death can be painful, even causing them to relive the grief they’ve already experienced. In any event they won’t remember what you told them so what do you do the next time? Distraction is an important tool. For example, when the loved one is anxious or agitated, I have found that playing familiar music can have an immediate calming effect.

Having recently read Steven Sabat's book I have found new ways to re-discover what is still there in my wife and how to tap into it.

The more you learn about dementia the easier caring becomes but it's still not easy.

Books I have found helpful:
‘Contented Dementia’ by Oliver James
‘My Bonnie’ by John Suchet. A very readable biography.
‘Dementia’ The One Stop Guide by June Andrews
Alzheimer’s Disease & Dementia ‘What everyone needs to know’ by Steven R Sabat
‘Still Alice’ by Lisa Genova.
‘The Selfish Pig's Guide To Caring’ by Hugh Marriott.

Fred
Sorry I've read this sort of stuff but it doesn't make life any easier. The bottom line is we are left to deal with sick people who need specialist support and we are amateurs. It is outrageous that there is no proper help for people with dementia and their carers. If you have cancer your illness is treated and the NHS pulls out all the stops to cure you or make your final days as comfortable as possible. Dementia patients get little or no support from the health service and carers are treated abominably. It isn't enough to allow us to talk about our problems here. We need proper will funded support and enough residential homes to care for patients when it is no longer for them to be cared for properly by their families and friends.
 

Frogmella

New member
Nov 4, 2018
2
Hi
My mother is 87 and it took me about 3 years to convince the GP that she had dementia after several incidents which highlighted her vulnerability. Combined with her decline in memory, self care etc it took a hospital admission to get a diagnosis.
My mother was never a sociable woman and isolated herself for many years just trying to hang on to her control of us as adults.
I work full time and therefore she cant get out as she is so frail and vulnerable, but I do pay for a carer to take her out and I do so at weekends/visit after work/wash clothes etc. I asked social work for access to a day centre in December to see if that would stimulate her......I'm still waiting. It now is past the point of her being able to focus on anything and I do feel that given her personality it did not assist in her finding any interests once she was diagnosed. The carers activities are really all during the day and I really don't have time now to enjoy the things I used to but realise I have to make time for myself. At this point I have phoned several times to social work to ask for an assessment for residential care (GP agrees she needs nursing care)..............
I'm still waiting and it just seems that you need to push to get anything done.
I'm sure they would say there is an all dancing singing policy/protocol that suggests prompt response to need but this window of opportunity has been lost.
R
 

Vickie

New member
May 30, 2018
1
I really hope and pray I stumble across just one 'positive' to celebrate. However, a member of the Mental Health team did open a new door for me after a home visit late last year. He was so concerned about my personal safety that he contacted the 'Crisis Team' who I have to say have been wonderful. My 80 year old husband of 55 years was diagnosed with Dementia 5 years ago, but the terminology on all his medical notes changed 2 years ago to read as, 'Alzheimer's'. I struggle with the violence, the death threats, the refusal to eat anything nourishing, the refusal to bathe or change his clothes.... Every day living and caring for this 'new man' is a struggle, and I truly wonder how long my own health will hold out. 'Positives' ?? .... sleeping in my own bed would be a 'positive'... Currently I sleep alone in an office because it's the only room with a lock on the door, which means I can safely close my eyes for a few hours. Sorry, I wish I could find a sliver lining somewhere that I could share with all here, but so far, my experience of caring for my loved one is an ongoing, very lonely nightmare.
 
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Annakey

Registered User
Oct 26, 2018
33
Hi
My mother is 87 and it took me about 3 years to convince the GP that she had dementia after several incidents which highlighted her vulnerability. Combined with her decline in memory, self care etc it took a hospital admission to get a diagnosis.
My mother was never a sociable woman and isolated herself for many years just trying to hang on to her control of us as adults.
I work full time and therefore she cant get out as she is so frail and vulnerable, but I do pay for a carer to take her out and I do so at weekends/visit after work/wash clothes etc. I asked social work for access to a day centre in December to see if that would stimulate her......I'm still waiting. It now is past the point of her being able to focus on anything and I do feel that given her personality it did not assist in her finding any interests once she was diagnosed. The carers activities are really all during the day and I really don't have time now to enjoy the things I used to but realise I have to make time for myself. At this point I have phoned several times to social work to ask for an assessment for residential care (GP agrees she needs nursing care)..............
I'm still waiting and it just seems that you need to push to get anything done.
I'm sure they would say there is an all dancing singing policy/protocol that suggests prompt response to need but this window of opportunity has been lost.
R
I sympathise. The propaganda pushed by social services and indeed the charitable sector makes it look as if one will be well supported at all points in the sufferer's decline. The more I find out the more I feel it is simply paying lip service and we carers are left to struggle along for the most part. Talking Point is useful for finding out what is [or not] available and it is helpful to feel one is not alone. But it also angers me because it isn't enough. We need real solid practical help and escape routes when it gets too much. I won't do 24/7 care. I simply can't and it wouldn't be unfair on my husband to expect me to. I need clear pathways explained to me and real support [not words] at each turn in the road but I know it is hardly likely to be forthcoming. We are extremely cheap labour and guilt is used to keep us that way.
 

Annakey

Registered User
Oct 26, 2018
33
I really hope and pray I stumble across just one 'positive' to celebrate. However, a member of the Mental Health team did open a new door for me after a home visit late last year. He was so concerned about my personal safety that he contacted the 'Crisis Team' who I have to say have been wonderful. My 80 year old husband of 55 years was diagnosed with Dementia 5 years ago, but the terminology on all his medical notes changed 2 years ago to read as, 'Alzheimer's'. I struggle with the violence, the death threats, the refusal to eat anything nourishing, the refusal to bathe or change his clothes.... Every day living and caring for this 'new man' is a struggle, and I truly wonder how long my own health will hold out. 'Positives' ?? .... sleeping in my own bed would be a 'positive'... Currently I sleep alone in an office because it's the only room with a lock on the door, which means I can safely close my eyes for a few hours. Sorry, I wish I could find a sliver lining somewhere that I could share with all here, but so far, my experience of caring for my loved one is an ongoing, very lonely nightmare.
I really hope and pray I stumble across just one 'positive' to celebrate. However, a member of the Mental Health team did open a new door for me after a home visit late last year. He was so concerned about my personal safety that he contacted the 'Crisis Team' who I have to say have been wonderful. My 80 year old husband of 55 years was diagnosed with Dementia 5 years ago, but the terminology on all his medical notes changed 2 years ago to read as, 'Alzheimer's'. I struggle with the violence, the death threats, the refusal to eat anything nourishing, the refusal to bathe or change his clothes.... Every day living and caring for this 'new man' is a struggle, and I truly wonder how long my own health will hold out. 'Positives' ?? .... sleeping in my own bed would be a 'positive'... Currently I sleep alone in an office because it's the only room with a lock on the door, which means I can safely close my eyes for a few hours. Sorry, I wish I could find a sliver lining somewhere that I could share with all here, but so far, my experience of caring for my loved one is an ongoing, very lonely nightmare.
Your story is awful, Vickie. Have you considered residential care? You really shouldn't have to live with a violent man even if he is your husband. Have you still got support from the crisis team? I am very worried for you.
 

Jujumonk

Registered User
Dec 16, 2017
10
Essex
Hi I care for my mum who has vascular dementia she is moderate to advance I have been told. I am finding it very hard trying to understand what she means because her words are jumbled so the lovely chats we used to have are gone. She gets upset at the slightest thing I say and her overall mood is always very negative now that I find it difficult to be with her. I feel so guilty when I say goodbye to her because I am glad to be getting away and sometimes I dread going in there as I know what it's going to be like which makes me feel bad again. She still looks like mum but it's not my mum any more and I miss her.
 

katiesinger

New member
Feb 7, 2019
2
I agree with the post re draining. My whole world has been turned upside down since Mums diagnosis. She lives in tyne and wear, our doctors are in durham as am I. I struggled for 6 months to get a diagnosis as one nhs hospital wouldn't share info with another. I couldn't get carer help as I didn't live in her area. I have sorted it now but if she was alone she would have been lost in the system without care at all. I am constantly tired, I am constantly emotionally drained and constantly being passed from one organisation to another. I find that places for a little respite for me charge an arm and a leg, £1000 each for a break tailored for dementia, £45 per half day day care. How Age uk can charge that when I get £66 per week is beyond me.

I get so frustrated as the people who are supposed to help and support, including yourselves, are very helpful with info of other organisations who can help, only to be given more leaflets with more info on other helpful organisations. No one helps unless you pay a lot for that help.

All I need is someone to sit with mum in her own home while I catch up on stuff or a day club that doesn't take up the money I get paid for looking after her. Some of the clubs treat her like a child, one reading three little pigs.

I have no idea where all the money that the charities raise goes, maybe the destruction of rain forests for all the paper they seem to give out.

I feel very deflated with the lack of free services out there and the wages I get for looking after her. One week I worked out I earned £1.22 per hour
 

Annakey

Registered User
Oct 26, 2018
33
Our media team are looking for people to share their positive and negative stories to help change the narrative surrounding life with dementia.

Has being diagnosed with dementia led you to develop a new hobby? Have you fulfilled an ambition since your diagnosis? Have you or has someone you know with dementia started to get more involved with your local community after diagnosis?

People often describe feeling isolated or left out after being diagnosed with dementia. Have you or has someone you know with dementia found it harder to interact with loved ones or feel a part of society after a dementia diagnosis?

Let us know your thoughts below :)
It is all very well to collect our stories - how are you going to help us. Or is it just to collect stories for publicity purposes? I think we should be told.
 

Baggybreeks

Registered User
Mar 22, 2017
78
Scotland
Sadly I feel there are so many negative impacts. My husband was diagnosed 7 years ago when he was 67. He denied that he had the disease, then became depressed, crying, then aggressive and paranoid. How can you say that is living well? There is no cure, and only some drugs which might slow down the dementia. He would never talk about his illness.
Mixed dementia destroyed our life together. I took him to various clubs and social events run for sufferers. So met other carers. And wonderful organisations .
However I was completely exhausted, dealing with his double incontinence, my broken sleep, his irrational behaviour. Even with carers coming in to help 1 hour a morning so I could get washed and dressed. The showering that my husband was supposed to have help with was rendered impossible by his resistance.
Finally his aggression was physically directed at me and he was sectioned, taken to a mental hospital. Which was an eye opener. Not enough staff, activities minimal, very basic. He also started having seizures about every 2-3 weeks.
After 4 months he had changed, calmer, and was able to transfer to a care home nearby.
So my life now revolved around the care home. He deteriorated quite quickly, losing his ability to talk, then walking went and we got a wheelchair for him.
Seizures continued, about 4-5 weeks apart. So I was constantly worried he would not recover, for 2 years in the Home. He needed full assistance, but I still felt bad not looking after him. He couldn’t feed himself so I was able to help at teatimes, in his room.
Twice he ended up in hospital with a chest infection and a vomiting bug. Fortunately I was able to stay with him as with the usual staff shortage they couldn’t spend time helping him eat or drink.
Then there is the awful decision about DNR, which meant we didn’t get him taken to hospital when he couldn’t swallow at the end. No tube feeding or intravenous antibiotics. A traumatic 5 days as he slowly slipped away, age 74.
It’s an awful long illness to have and to try to find the right help.

So what is good or positive about dementia? Not much. I have to work hard to remember him before he was stolen away by this illness.
We did have 50 years together, so I can be thankful for that.
Two lovely grown children who do him credit.
And two grandchildren who live too far away with our daughter.
I met some very kind people, compassionate, not in the hospitals, but in the third sector.
And made some new friends who have gone through the same situation.
And meeting other carers of younger families made me appreciate how lucky I was to have had a great family life with the usual ups and downs.
Perhaps the dementia has made me more tolerant and understanding.
And Talking Point has shown me that so many people out there are willing to support each other.

But the disease still killed my husband. And as he died only recently I am still adjusting to his total disappearance from the world.
 

Skylark33

Registered User
Aug 26, 2016
11
75
Gosport, Hampshire UK
Hallo, I was diagnosed with Alzheimer's about 4 years ago. I was 70 then. I had lung cancer first, and after a major op I crept away from my hospital ward at night and hid in someone's garden until rescued by my lovely daughters. I had thought the hospital was trying to kill me. It was a paranoid delusion caused by an infection in my lung interacting with something they hadn't spotted, which turned out to be Alzheimer's. Anyway, the medics succeded in saving my life, obvs! After recovering from that palaver I had a fairly normal life for a couple of years, but the Alz is affecting me more now. My partner of some years now finds me too difficult, so I live alone, though we do see each other occasionally. I have passed 3 annual driving tests, but I think I will give up soon. My confidence has reduced because I forget a lot now, including routes that were very familiar. I avoid driving at night, because I get lost very easily. My balance when walking is now wobbly, and I use a stick if I remember to take it. Socially I have become shy. I don't like crowds and noisy places, and spend most of my time alone. I think this isn't really a good idea, but I am very reluctant to get out and meet people. My former partner and my daughters are my main contacts. Recently I have started writing about my dementia, as a record for myself. I now live on my boat, because I like it, it's a simple way of life, and if I rented somewhere I would have very little cash left. My aim is simply to keep active for as long as possible. I would be interested to know whether other people with dementia are similarly inclined towards solitariness. Cheers.
 

Anneliz5

New member
Dec 12, 2018
4
I have seen both my parents through dementia and agree very much with what Cazzita has said. There should be more proper support for carers especially in situations where the person(s) being cared for are not safe to be left alone. In Ireland, carers can get 350 euros a week for looking after elderly relatives. Here are my Positives and Negatives

Positives

It really teaches you patience and that you have to simply accept things. I found this very difficult at the time.

There are good moments and good days. In the early years we were able to go out to the theatre or for a meal or just sit in the garden on sunny days, remembering some moments from times past and eating ‘posh’ picnics. They are the things to celebrate. I took photos of my parents on these occasions and can look back on them fondly. Last January, when my Dad passed away I had a good six months with my Mum. She enjoyed going to a singing group and trips out in a wheelchair when the weather was good.

There are good people out there – members of my parent’s church were the only people who really stepped up when I needed practical help.

Some of the carers who came to my parents home were very kind people too but, unfortunately, the practical side of the ‘four half hour visits a day’ home care package does not work when dementia has progressed to a stage where constant prompting is needed to eat and drink and there are continence and mobility problems there too.

Knowing that you tried to do your best.


Negatives

The social/health care system doesn’t care even when you are coping with end of life care at home and really need some guidance and help. At one point I remember telling my GP about looking after my parents. The only thing he said was ‘it will only get worse’

Lack of practical and financial help for carers

Activities that were available for the parents early on would have needed a person there to get them ready. I could not do that as I was still working at that time.

The cruelty of this disease that eventually robs people of their ability to do the most basic things

Confusion, tears and constant repetition for those like my Mum who fought to remember but couldn’t

Anger and impatience for those like my Dad who did not seem to have any grasp of time or understanding of other people’s sensibilities.

Having to accept the gradual decline that you are witnessing

Relatives who say ‘you are doing a great job’ and just let you get on with it!

End of life care – My Mum was in a dementia care home for the last two and a half months of her life. I really wish that I had brought her back from hospital to her house in December (even though the boiler had decided to pack up). I did not realise that the residents in the bedrooms either side of Mum were so noisy all day and all night. Initially, the care home wanted her to be moved and there was squabbling over who should pay for her a posture form bed – NHS or the care home. There was also a lot of form filling beforehand about wishes for end of life care and, when I asked if Mum could be moved to a hospice as we had indicated on the form, I was told, no. Sorry, my Mum died in February and this still makes me very angry. My parents both died in noisy environments, my Dad was in hospital. I think people should have a right to a peaceful end.
 

karaokePete

Registered User
Jul 23, 2017
5,434
N Ireland
I really hope and pray I stumble across just one 'positive' to celebrate. However, a member of the Mental Health team did open a new door for me after a home visit late last year. He was so concerned about my personal safety that he contacted the 'Crisis Team' who I have to say have been wonderful. My 80 year old husband of 55 years was diagnosed with Dementia 5 years ago, but the terminology on all his medical notes changed 2 years ago to read as, 'Alzheimer's'. I struggle with the violence, the death threats, the refusal to eat anything nourishing, the refusal to bathe or change his clothes.... Every day living and caring for this 'new man' is a struggle, and I truly wonder how long my own health will hold out. 'Positives' ?? .... sleeping in my own bed would be a 'positive'... Currently I sleep alone in an office because it's the only room with a lock on the door, which means I can safely close my eyes for a few hours. Sorry, I wish I could find a sliver lining somewhere that I could share with all here, but so far, my experience of caring for my loved one is an ongoing, very lonely nightmare.
Hello and welcome to the forum. I think it's important to deal with this aggression and also to protect yourself. A chat with the GP is a good start as there may be some medication that will help.

There's a Factsheet about this issue and in the hope that you can get some advice from it here's a link to it https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I have often seen it advised to have a safe room, with a safe exit, available and keep a phone to hand in case help needs to be summoned.

This may seem like a step too far. However, I have read that it can be useful to report any physical assault to the police as they will record that and this can be useful as a paper trail if you ever seek assistance from Social Services in the future.

If you want to talk it through with anyone the experts on the help line can be good, details as follows

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
 

Dorsetdoll

New member
Jan 25, 2019
5
What is the point of this thing. I can't even see the post I wrote yesterday let alone see any replies. I think you are on your own dealing with this evil disease. No one's interested and no one cares.
 

Short story

Registered User
Oct 25, 2014
1
christchurch
My husband was sixty three when he was diagnosed with vascular ftld with aphasia and early Alzheimer's. I am disabled and he had helped me with things i couldnt do because of severe arthritis. Now I am his full time carer. Our lives have become almost unbearable. People who I thought were friends didn't want to know when they found out about my husband almost as if it was catchable! Both our sons luve a distance away and so we are on our own most of the time. We keep hearing about Dementia Friendly councils and Doctors .Surgeries but i have found no dementia friendly anything! To be honest its a nightmare. Although we see our eldest son and his family on a pretty regular basis, i still feel utterly alone most of the time. They have their lives to lead and cannot be expected to give up all their free time to us but with less and less conversation and the lack of empathy from my husband because of his illness, its a pretty miserable existance. However reading the posts on here today has made me reakise I am not alone in how I feel and that has helped a lot. My heart goes out to all of you, sufferers and carers alike. X