How has dementia impacted you?

marionq

Registered User
Apr 24, 2013
6,072
Scotland
Sylvia I feel your pain and it is what I expect to feel myself some day. I too cannot believe that I have allowed myself to be in this situation. Yet what choice do we have.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,356
Nottinghamshire
"Trouble--free dementia" cannot be possible in my view either. The nearest we got to it in our family was my uncle who was lucky enough to die from a heart attack while he was still only mildly confused. But even he became extremely confused when away from his normal surroundings - as my mum and dad found out when they went on holiday with him and poor dad had to sleep in his bedroom to stop him wandering off. Dad didn't get much sleep!!

I know I was quite lucky with my dad - at least he kept his sense of humour and, according to his carers, was a gentleman to the end. But it was a long hard road we traveled.
 

Countryboy

Registered User
Mar 17, 2005
1,458
Cornwall
I’m amazed when reading the various replies to thread they nearly all seem to have one thing in common replies are from a family member or carers let’s face it not every person with dementia has a carer or need care

so where :):)are all the people with dementia I read a high percentage of patients diagnosed are either living on their own or with support from family with minimal impact to their normal life
 

Lawson58

Registered User
Aug 1, 2014
2,138
Victoria, Australia
I attended an Alzheimer's expo in my city about a year after my husband was diagnosed with AD. It was run by Alzheimer's Australia and two of their presentations disturbed me very much. One was by a young man touting the benefits of his exercise program, the one with all the bells and whistles. Most of the people attending were pensioners and this type of program was financially out of reach for most of us. I guess that was the sponsorship deal but I couldn't help feeling a bit cynical about the value of the 'show'.

The other presentation was about people 'Living Well with Dementia', showing people smiling while they paint a picture or make a pot. It is all very well and lovely to have programs that aim at improving the quality of life of PWD but it totally ignores the fact that a person with dementia rarely lives in a vacuum, that their disease has a massive impact on those around them, particularly the one who carries the major burden of caring.

I would say that my husband has managed to live well with dementia. He plays bridge four times a week and occasionally goes to a congress in a nearby town. His whole life revolves around his bridge timetable to the point that all his numerous doctors appointments have to be slotted in around that as well.

I have to say that though his life has changed since his diagnosis, my life has been wrecked. I have things I like to do - volunteering with environmental groups, but I admit that these are stop gaps, fill-ins because I know I need to do this for my own well being. I love the people there but somehow I am the 'go to' person for help for those who have relatives with dementia- no escape there either.

But it is not what I would have been doing had things been different. The worst part is that I have no idea of how long this situation is going to last. I am 75 years old and am running out of time to do all the things I want and am running out of the one essential commodity called hope.
 

Fjb

New member
Feb 21, 2018
3
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 :)
On
 

April100

Registered User
Nov 13, 2016
9
Positives -
that I am doing my duty. That Mum is cared for at home, she is warm, clean, has the food she likes, has company.

Negatives -
Loss of earnings (gone from full time professional to part-time basic wage). I don't get carer's allowance as I am in receipt of my State Pension.
Loss of freedom (can't leave her for more than 2 or 3 hours at a time)
Loss of social life - I can't join in things others have arranged as the time doesn't fit with Mum's needs, if friends/family have no experience of dementia they don't really 'get it'
Loss of my own identity - seen as 'carer' by medical professionals
The longing to be able to travel/to get away/to have a break
Dealing with someone that you can't please no matter what you do
Interrupted sleep on a regular basis
Dealing with mood swings
Caring for Mum on my own - It's like a prison sentence with no release date.
Living with someone with some disgusting behaviours
I wish thngs were different.
 

TedW

Registered User
Feb 2, 2014
31
Corfu, Greece.
My darling wife was diagnosed 9 years ago and is now in the advanced stages of FTL dementia and Parkinson's disease. She is 76 and I am 74 years old. We live in Greece, I am her sole carer, there is no state assistance.
Positives: Feeling privileged to care for that beautiful woman I made a promise to 51 years ago.
Terribly proud that one of our sons has more than stepped up to the plate and gives me 100% support in everything I do.

Negatives
: Feeling exhausted and tired. On occasions feeling helpless and useless. Feeling bitter and angry that my beautiful girl is slowly being taken away. Terribly disappointed that our other son can not face the reality of our situation and has withdrawn any contact from us. Worried that although in good health (fingers crossed) I might become ill or injured and unable to care for my wife.
 
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veronicamary

Registered User
Aug 21, 2013
14
@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 :)
Hello Everyone,
just found your post and as feeling particularly lonely have read all of them.
It is sad there are so many people like us.
I am 85 and looking after my nearly 98 year old O.H, who now refuses to move anywhere if he can help it.
He has started to fall backwards chiefly because we think he doesn't move enough, but is incredibly stubborn and determined not to do anything he is asked! We notice he suddenly gets very deaf when the wrong subject comes up like "shower".
Friday morning is shower day and we have a lovely chap who comes to help my O.H, but he astonishes us by the ploys he thinks up i.e. too tired, will do it tomorrow, it's not the right day, don't feel well etc. I cannot tell you how much I dread Fridays and so does he!
Once he accepts there is no escape he lets his helper get on with it, but repeatedly tells him he can do it himself.
I have just had a hip replaced and for the first three months was pain free. I thought all would be well, but then six weeks ago the operated leg developed neuralgia and I couldn't put any weight on it so am finding it very difficult coping with him. He knows about my cancer and hip problems, but "forgets" and loudly shouts for what he wants. Most days I am lucky if he speaks more than three sentences to me.
He was diagnosed ten years ago and we were told it was affecting the left temporal lobe, which makes him difficult to take anywhere. Most people understand, but I have been so embarrassed by his behaviour. He thinks nothing of butting into total strangers private conversations or quoting Shakespeare at them!!
So at present we stay at home, I get my shopping delivered and my four children help as much as they can. Also have a lady who comes in for an hour weekly to dust and hoover as most appliances are too heavy for me. Thank goodness for attendance allowance and the internet. One keeps us going (just about) and the other keeps me sane Also have really supportive, lovely friends.
If only they could find a cure for this horrible disease as watching someone you love changing into a frightened being is so cruel
Thank you for listening and keep smiling.
 

Chalkie

Registered User
Jan 19, 2018
12
I was diagnosed with mixed dementia (Alzheimer's and vascular) 18 months ago at the age of 66. After a few months of disbelief during which I came to terms with the reality of the present and what the realities of what the future may hold, I decided to do whatever I could to help myself. My husband and I regularly play board and card games which require a bit of skill, and sometimes I win! I read a lot, either whodunits or historical fiction, and have just started a creative writing course as I want to write a semi biographical novel about an ancestor who was transported to Australia in 1830. I enjoy country walks with our dog, listening to music, watching documentaries on TV and so on.That's all positive. On the negative side my dementia means we can no longer travel, socialise in large groups, not even with family, go to the theatre or cinema. But for me, life isn't about dodging the storms, it's about learning to dance in the rain. I'm learning new steps every day! By the way, the care the NHS has given us has been exemplary, as has the care given by NGOs and voluntary services.
 

Dorsetdoll

New member
Jan 25, 2019
5
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 :)
 

Rhonda70

New member
Mar 4, 2018
4
I feel changed by my experience looking after my mum (bvFTD): Emotionally drained and saddened by this horrible disease; financially drained as so much has had to be changed and she is almost under the 24k savings now which is worrying me; angry that carers allowance is a measly 65 pounds per week - unbelievable! Tired beyond belief, unable to work etc etc. Cleaning up incontinence (both) issues etc is so demeaning for us both. Worried about the future as she is declining and so sad for her that she has changed so much. Sorry, I don't see any positives at all - why I am on antidepressants I suppose. The powers that be should be ashamed that dementia care is just not good enough in this country, that everything from gaining a diagnosis to treatment(?) to sorting out care is an absolute minefield and that's without the effect it has on the carer. Soul destroying. I don't feel like I will ever be the same again
Sorry if my post offends anyone, but that's how I am feeling. Hope it is different for others.
 

Dorsetdoll

New member
Jan 25, 2019
5
Mum has dementia she lives at home with 5 care visits each day. I don't know which mum we are going to get when we visit and my tummy turns over when we pull up at her flat. She can be weepy mum who is grateful for what we try to do sometimes relatively normal and sometimes completely vile. She's wrecking our life and I feel resentful guilty sad and a host of other emotions. She prefers my husband. He is much more patient than me. Trouble is we've never really got on well. She is very self obsessed and everything is about how she feels. She's always been very needy. Our son has mental health issues and our daughter is a single mum with a 9 year old who we help her with as she has been very poorly with problems arising from cancer treatment. It all feels like too much. I just want it to end and that makes me feel awful but mum is 95. I can't handle the endless **** that we get from her. Sorry this us very negative.
 

Rhonda70

New member
Mar 4, 2018
4

I have lived with my mother for 3 years now , she is 71 years old , diagnosed early on set Alzheimer’s at 65years. My dad died a year later and his wish was I would move in with mum which I couldn’t do at the time but did 2 years later when my oldest son got married .

Must admit it’s the most challenging thing I have ever done , especially the last year which sadly has seen a deterioration, I never remember my children being this badly behaved . I have 4 sisters who cover mum when I go to my work 3 days a week , or infrequently go out. I have been spat at , called names been awful. I’ve cried & cried some more. We have provided the care ourselves with support of community nurse .

We have tried Day centres but been told not for her as she doesn’t want to socialise, like she hates the world. She was well involved in the community doing youth club, organising pensioners dinners , running local mum & tots group for years now all she does and in public too is scream at children to shut up, call elderly people stinking , all the things she had most time for she hates now .

I know it’s her illness but so sad and frustrating as there is nothing that gets her engagement , old times no, knitting no, photographs no, jigsaws no, music yes sometimes .

Tomorrow we are taking her to a short term place in a residential home breaks my heart but I can’t sustain the level of care anymore. Can’t turn your head for a minute she’s hoking in bins, turning cooker knobs on , leaving water running , had to secure and hide under lock a lot of things .

I’m not confident she will settle cause she still seems so aware of unfamiliar things and surroundings but we so need something to work

Never happy , hardly smiles , wakes up about 8-12times a night .

Had remove all the mirrors screaming & swearing at her reflection and the TV.

The illness is the most demoralising, strips them of every bit of dignity , socialibilty In our mums case . So much more than memory loss , repeating which it did start off as.

It’s been one of the toughest years I’ve had but attending a few of Alzheimer’s society courses and few talks has helped me understand how this illness could make my mother so mentally ill and nothing like the pleasant social helpful independent woman who she used to be.

Thanks for reading in advance

Rhonda
 

Eftee

New member
Dec 6, 2018
4
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
 

Mcrampsie

Registered User
Sep 17, 2016
6
Positives and negatives…

Like others mainly negatives I’m afraid.

In general? The terrible sadness of wanting to share/talk about things with your partner, before realising she’s ‘not there’ in any meaningful way.

The general uselessness of the system – though we have been lucky in part. Positives: In December 2017, when my OH became very ill, wandering in the night, screaming, constantly looking for something/me - she was admitted to hospital and spent two and a half months on the ward while the Drs tried to figure out if her illness was acute or chronic. It turned out to be the latter.

Positives (though I didn’t see it that way at the time) included that it was felt it would be ‘unsafe’ to discharge her home as this is a house of stairs and V was at risk of falls. So my time of being her main carer had come to an end almost without my realising it.

Another major positive was that the doctor treating V managed to get her continuous nursing care, which meant that in the end we didn’t lose out too badly financially.

Negatives:
V had to go into a care home but you’re not given any help with identifying a suitable place….just a list with the CQA ratings and you’re told that you can’t choose one that isn’t good. So at the point when you’re frantic with worry and trying to visit your frightened partner every day, you’re also expected to track down a care home. The nearest felt they ‘couldn’t manage V’s needs’ because she was physically active…walking, walking. I had to gradually increase the area in which I could look. I visited some shockingly awful looking ‘care’ homes.

Communication between the hospital discharge team and the local social services also turned out to be poor.


Eventually, I found a nice Care Home that could meet V’s needs but it was the best part of an hour’s drive away – so it took the best part of 4 hours to visit V for 2 hours. I still work part-time as I believe it’s good for me, so I have to schedule work around these visits. Positives: Many of the staff were well-educated eastern European staff, with good English and lots of training in how to deal with AD.

In January 2019, V took another step down and she was admitted to the specialist AD ward of a hospital local to the care home but even further away from me. She is still there and very poorly. I try to get there most days.


Positives: Incredibly supportive friends and family. Lovely NHS staff, though it turns out they have little training in how to care for dementia sufferers (much less than the care home staff) oddly. Many of the staff are from former colonies and all work incredibly long hours. They were pleased when I brought a load of V’s old Dementia magazines up to the ward, and a number of them read them with interest.

Positives: Oddly, now that I am not caring for V at home, I get to do things I want to do – e.g. the local authority pay for something called ‘New Age Games’ activities that are free to the over-50s. I have now taken up cycling after a 30 year break!
Negatives: Just before Easter, the LA tried to stop paying for V’s Care Home placement because she had been in hospital for several months. They did this without reference to me.

Postive: I wrote saying I’d take them to the highest court in the land – copying everyone I could think of in, including my local MP and they backed off.

One amazing positive has been having Power of Attorney. If you don’t have it my strong advice is get it. It made everything so much easier – especially the financial arrangements.

Sorry this is so long but I’m going through it all at the moment. On Saturday morning of this Easter weekend, I was checking out woodland burials in a lovely place & have found I am finally able to consider funeral arrangements…having been advised by a social worker that I should do this last summer. That would be an interesting topic for a thread!
 

Frankyt

New member
Jan 3, 2018
7
I was sole carer for my mum, even though I am the youngest of 6 children.

Dementia has torn my family apart, only one of my siblings speaks to me. The others have disowned me for putting mum into a care home. She was unsafe living alone and I was at breaking point. They didn't understand how difficult it was as they only ever saw the good side of mum when she was happy going out with them.Not the side of when she was being nasty at staying in, or the upset and confused side. I was doing everything for her and the stress on me and my own family was too much to take.

On the plus side mum is happy most of the time. Is getting looked after, more than I could do. Is safe and amoungst company all day. She always insisted on never wanting to go into care. The disease has left her not knowing where she is so she is accepting of her surroundings. The decision to put her into care was a heartbreaking choice. I've realised that I am the one who was broken over this and mum has settled (it took a couple of weeks). You have to remember that they are not wholey the person they once were, and what they once wasn't happy to do becomes more acceptable for them. I nearly struggled on afraid of this reaction from siblings.

I have my life back and do not feel bad for this (not now anyway). Siblings are having to help out more as they can't just ring me up to go and see to mum now (their choice to have no contact with me). This means they are having to go and see to her when she is upset and unco-operative. I have got some quality mother and daughter time back which is lovely. I have my own life back and no longer feel bad for the decisions I had to make.
 

Annakey

Registered User
Oct 26, 2018
33
I too can see no positives in this journey we are on. My husband was diagnosed 2yrs ago with lvPPA and it took almost 2yrs to get that far. We are both working age and have had no savings left have sold our house and moved to be nearer family and are now living on benefits. The whole process has been a nightmare to deal with. I to am on antidepressants and know things cannot get better for him or me. Whoever said living well with dementia hasn't asked the person caring for someone. Life is lonely and isolating for both of us.

There are no positives as far as I can see. My husband is in total denial which makes my life very difficult. I want to support him but he makes it so hard. Won't let me get domestic help, won't let me arrange respite care so I can get a proper holiday. I have to go along with his ridiculous fantasies about himself and I hate the lies.

I've given up really. If he won't take his tablets I don't force it. I have no interest in helping him any more and look forward to him being bad enough to go into care. I hate my life at the moment. I don't read the positive stories on this website because it makes things feel worse here. I have drawn up red lines - no 24/7 care from me, no dealing with incontinence, no accepting violent behaviour.
 

Annakey

Registered User
Oct 26, 2018
33
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 :)
I've responded but how is it going to help us? Where are the active campaigns to demand help rather than expecting relatives to bear the brunt of looking after someone with a disease which is too complex and severe for amateurs to well.

I expect when I get desperate I shall simply walk and let the state deal with it. I am not prepared to give up my life for someone who won't even admit there is something wrong with them and who insults me at every turn.
 

Annakey

Registered User
Oct 26, 2018
33
Sylvia I feel your pain and it is what I expect to feel myself some day. I too cannot believe that I have allowed myself to be in this situation. Yet what choice do we have.
Walking away is what I shall do when I can't stand it any more. I'm not wrecking my health for anyone. I saw my mother do it and I won't do the same - it isn't worth it.
 

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