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How has dementia impacted you?

Discussion in 'Alzheimer's Society notices' started by SophieD, Apr 11, 2019.

  1. AliceA

    AliceA Registered User

    May 27, 2016
    2,418
    When I try to analysis the positives and negatives, it seems there is the outer and the inner effects.

    Outwardly and physically the negatives are overwhelming. The support is very thin indeed, it seems given with one hand and taken with another even when and if one finds it. More often one doesn't. Some has been taken away such as local transport. We have become isolated.
    My earlier attempts at getting a helper to do some cleaning etc. failed because the hours offered were changed to such an inconvenient and useless time. I refused to be a easy target.
    Physically I am worn out the effects of trying to get support, the offer of respite has faded with the suggestion of somewhere 50 plus miles away. After a phone call yesterday I felt quite drained, income was taken into account but not the outgoings, these are higher than there were as Dementia is like a cuckoo in the nest ever demanding.
    My own needs ignored on this occasion. My husband wobbled about day care today, so respite near home with local connections is one thing, a place far away and out of reach except by a non existent car quite another.
    life is fragile.

    I do find meaning and positives in dementia life, this is an inner action, if I did not I would not survive.
    I have found kindness sometimes from unexpected places, from strangers. I have found support on TP, I have found joy in small things, no holiday away but an hour taken to a place near home overlooking water was a real break last weekend. So small compared to my neighbour with his boat and a sea trip but a gem to me.
    I have found out more about my strengths and weaknesses. For me life has always been a journey of self discovery as life has throw brickbats and flowers. This sense of meaning in everything that happens has helped me get through many challenges over the years.
    For me, and I am not suggesting this as advice for others, finding some worthwhile meaning helps me cope.
    Others take to drink or worse.
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,418
    And to you too. Compassion for ourselves and others is all we really have. You certainly are not alone, do post more often. It does help to get our feelings out, Alice x
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,418
    We do care for each other on here, not much help when we are clearing up a mess but it eases the pain a bit. X
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    Hi @Dorsetdoll
    This thread is intended for people to tell of their experiences and not for replies.
    You sound at the end of your tether.
    I think it would be better to start your own thread so that more people will see it and you will get replies
    Here is a link to the sub-forum "I care for a person with dementia" Click the blue button top right marked "post new thread". A window will appear and you can write your message in it
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
     
  5. dasntn

    dasntn Registered User

    May 21, 2014
    16
    North Devon
    I am the full time carer for my wife, who was diagnosed with Alzheimer’s in October 2014, although we knew there was a problem for quite a while before that. She was 59 years old at the time of diagnosis.

    I will try and give my feedback under positives and negatives, as requested, but inevitably, negative aspects are more numerous and have more impact.


    Positives:

    I spend more time with my wife than before – I used to have a “high powered” job, with lots of travel, and was often away. Now we are together all the time.

    Because of the job, and the Spouse Long Term health benefit that came with it, we are financially secure, for now.

    Young People With Dementia charity in Berkshire are (were, we moved away) really good for creative and varied ways to help.

    I moved neared to my brother as I knew I would need more support, and that has brought us closer together.

    The experience has given me a lot of input for songs that I have written over the last few years.

    I think it has made me more tolerant and patient. I still get stressed and angry, but perhaps less than before.

    Negatives:

    My wife has done nothing new since diagnosis, goes out less, socialises less. I guess you are trying to look for the positives, but there are very few, from my perspective.

    The woman I married is no longer really there – in the past 5 years she has forgotten that she is married, has children, isn’t a child herself. She has almost completely forgotten how to read, and books were her passion. She struggles to follow conversation, unless it is simple and slow. I miss her, even though I am with her all the time.

    I feel more isolated, although I am lucky to have family and friends locally who help a lot.

    I feel abandoned by the NHS – our local GP does what he can, but no specialist care is provided at all.

    I miss my job, and the purpose it gave me in life, as well as the income. I had to stop when it became clear that my wife needed full time care.

    We are at the start of her being less good with personal care and toilet type things - I don’t enjoy dealing with the mess.

    We go out as much as we can, but far less than before, and in simpler ways. My wife is losing balance and walking skills, and changes to her ability to see means that we can just do short walks in bright light on well made paths, not longer strolls in the country. The South West costal path is only 3 miles away but we can’t use it anymore.

    We are both putting on weight – going out to eat cakes is one of the few joint pleasures left to us, but without the exercise, we shouldn’t do it.

    I’m tired of feeling guilt – am I doing the right thing, am I doing it as well as I should, are my decisions taking my wife’s needs into account, or am I being selfish – the list goes on.

    Limited ability to get support from the society – they have been friendly, but there isn’t much provided that suits my wife. When she was first diagnosed her reaction was overwhelmingly angry and full of denial, so going to any organised activities were a minefield. Now she doesn’t realise that she has dementia, but doesn’t see herself as 64 years of age, so doesn’t like being with lots of old people. She doesn't enjoy crowds, or talking to people. And she lost her long term memory from the start of the condition, so memory cafes are meaningless to her.

    If you don’t fit the “standard profile” of a dementia sufferer, as my wife doesn’t, the facilities provided are very limited. (That’s why YPWD in Berkshire were so good – they were targeted at a younger demographic).

    I cry now more than I used to – not too often, thankfully, but I would rather not. All the “Living Well With Dementia” type material generally just makes me feel that I have failed to help my wife be able to live well.

    I’m sure there is more, but that feels more than enough for now.







     
  6. Cazzita

    Cazzita Registered User

    May 12, 2018
    492
    #66 Cazzita, Apr 24, 2019
    Last edited: Apr 24, 2019

    This is so good to hear. I am sorry your siblings chose to freeze you out but great to hear that you have your life back too. How selfish of them to treat you like that though. No-one can judge the carer - it breaks you. xx
     
  7. Cazzita

    Cazzita Registered User

    May 12, 2018
    492
    I totally get where you are coming from. I feel so angry that the government just turn a blind eye to carers of dementia sufferers. I gave up a well paid job for 65 pounds per week for this miserable life. WHY and WHEN is this going to change? We must be saving that state millions :(
     
  8. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    479
    Female
    High Peak
    This thread is heartbreaking.

    One negative I found is hospitals. Mum fell, hit her head and ended up in one. (I won't mention which but it now has 'special measures' status...) I'm fortunately healthy and have had little to do with the medical profession for years, so was shocked and horrified to see how things are now. No one talks to each other. Mistakes happen constantly. Records/meds are not checked. You can't find a doctor and when you do they seem incompetent/rude or completely rushed off their feet. They constantly contradict what the previous one said. Monitoring is haphazard at best. Patients are left without food/drink and in wet/soiled beds. OT and physio is also hit and miss.

    I can't begin to tell you how many errors were made in mum's treatment. I had to really shout at people to get her another CT scan, 2 weeks in. Without my insistence they wouldn't have found the chronic sub-dural haematoma, which subsequently increased in size necessitating a move to a different hospital that was unfortunately no better. The nurses (on a neurology/head injury ward!) had no dementia training. They phoned me one day and put my mum on the phone. She was raving about dead babies in the corridor and a man trying to bash her head with a brick. I could hear the nurses chatting in the background. Why would they do that? What was I supposed to do from 100 miles away? And one doctor there explained treatment of a CSDH to me but unfortunately much of what she said was incorrect/incomplete/out of date. Turned out I knew far more than she did :(

    Lost things included notes, scans, mum's teeth, clothes, shoes and coat. And my temper.

    I also got my first experience of dealing with social services and those wonderful hospital admin people - the discharge team. *Heavy sigh*. I can't even bear to detail that. And later the DoLS team. I found the whole experience of dealing with these people unnecessarily adversarial. You soon become aware that it's all about money/bed-blocking/shifting blame/responsibility and box-ticking. Common sense and the wellbeing of the person concerned come last.

    Last year mum broke her hip when someone in the CH pushed her over, so back to hospital again. Long waits in A & E, more errors, lack of communication, unsafe discharge, etc. I despair.

    Can't think of any positives. Nope, not a one. Nada.
     
  9. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,308
    London
    Hi @Dorsetdoll. Thank you for contributing to this thread. The post you made before this one can be found earlier on in the thread, and also by clicking on this link: https://forum.alzheimers.org.uk/threads/how-has-dementia-impacted-you.115349/page-2#post-1628742

    I will be in contact with you shortly to offer you some further support.

    Sophie
     
  10. jennynixon5

    jennynixon5 New member

    Feb 10, 2019
    5
    I have been caring for my mum for about 8 years since I retired. I visited every day quite happily travelling the 22 miles. She was still quite mobile and managed to carry out small tasks for herself. Last October at the age of 94 she ended up with sepsis and ended up in hospital with 24 hours to live. She made a remarkable recovery and after 3 1/2 weeks she was discharged. I immediately moved in with her as she became bedridden and incontinent and was diagnosed with vascular dementia. Her dementia has progressed very very quickly and adjusting to this has been hard. I really hate being negative as my mum has been a wonderful parent, but it feels as if my life has become non-existent. I promised her years ago that she would never be put into a nursing home and I can not break that promise. My children all work as do my grown up grandchildren. They visit when they are able and occasionally sleep over. I've gone from being an active 68 year old to feeling like a worn out and lonely person. I'm sorry to confess that I do get frustrated with our conversations but obviously I would not show it. I am hardly in contact with my friends and neighbours as I rarely get back to my own home. Frankly,again sorry to confess but I'm bored and when I have time to go on line to research my genealogy(my passion) I'm usually too tired to bother. I've just re-read my post and I sound so self pitying but I do not want to. I feel like I want to go on care giving with love in my heart and a spring in my step!! I never imagined it would be as hard as this and so life changing.
     
  11. ryedaledigger

    ryedaledigger Registered User

    Dec 31, 2012
    13
    Malton North Yorks
    Hello. I was diagnosed with Alzheimer's two years ago and at first, it was very hard on my family to come to terms with my condition. My wife has been trying to get me to go to the doctors for many years but I was scared as I saw how much my Grandma went through with my Grandad many years ago. Now my life has changed a lot, I try to keep active and positive but at times when I forget things and get confused then look at my dear wife's face, this gets me down. My Son has taken my condition badly so much he very rarely comes to see us as we were the best of mates and did so much together. My support network is good and I am still allowed to drive but I don't drive far and don't go out of my comfort zone.
    All in all my life has changed a great deal, I was outgoing, fun to be with, earning very good money at a job I loved but now this has dealt me a very hard blow. At times I do get very depressed as I hate being a burden to the ones I love and have told them that when I get too bad I must be allowed to go into care.
    This may be not a positive reply but it is from my heart.
    Thanks for reading this. Steve
     
  12. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    I can't list or explain how much my and my spouse's lives have changed since his diagnosis of "cognitive dysfunction" 8 years ago. As onset was in his early 50's everything changed for us. He was no longer able to hold down his full time job and had to retire early which impacted our financial status greatly. He continued to hobby farm but struggled tremendously as he would forget where his tools were or forget how to operate machinery. His disease state also focused distain for our son-in-law that lived next to us. He would constantly accuse our son-in-law of taking his tools and trying to push him off his property. This drove a wedge in between our daughter and us as she was ton between both sides. This escalated so much that we finally sold our home and moved away. This calmed my OH but left me more isolated than I had ever been before in my life. We didn't know a sole in our new location. Our families never came around to visit or help out. We muddled along until I found myself trying to hold down a full time job, commute 3 hours a day back and forth to work, and try to take care of the farm animals, my OH, and our pets. As his condition worsened I made the decision to sell the farm animals (he cried). He had already just stopped driving and I let his driver's license lapse. Last year his world shrunk from traveling around our community to shopping stores, or to a movie to just walking between the house and barn and back. Then shrunk more to just walking around the house, upstairs and down, then just to the down stairs. Then he had two seizures and lost the ability to stand up by himself. Later he lost the ability to walk at all. So now his world consists of the living room couch, to the portable commode and back. He is almost totally non-verbal and does not know who I am. He is incontinent and needs to be fed, washed, dressed, etc.
    Some positive things are that we met and formed great relationships with new people in our community and I now have private hire caregivers that I have formed a bond with. I am also fortunate that his angry/destructive phase didn't last very long. He now smiles and chuckles a lot. Giving up driving was not a difficult issue either.
    Also the whole experience has encouraged both of us to come closer to the Lord and I have found great strength from him to be able to cope and maintain through this time. New struggles surround finding, scheduling, and paying for private care caregivers. There are no recourses whatsoever available to younger couples going through this process. All costs are left up to our own abilities. So, I can not afford to retire, yet I can not afford to continue to work. This makes every week a struggle as I wish nothing more than to be able to spend as much time as possible with my OH while he is still here, yet am pulled in every direction away from him.
    Yet overall, I would have to say though THE MOST difficult hurdle has been the being ripped apart from the man I love, little by little, every single day since this journey started.
    This forum has been one of the most helpful things I have found. It helps tremendously to communicate with people in the same situation as we are and to be able to navigate the site easily.
     
  13. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    And.... another hard thing has been the handling everything myself - all the major and minor decisions.
     
  14. vernon

    vernon Registered User

    Jul 24, 2014
    14
    north west
    At 52 OH has heart attack, at 56 had mega seizure, at 70 had vascular demantia - now at 76 has chronic heart, two back to back seizures after 20 years and cannot balance or explain himself properly. BUT POSITIVE he is the same happy man that i married 50 years ago, still the gentleman he always was and has worked hard all his life and created a beautiful home of 50 years for us all, with enough money to feel comfortable. i and my family feel very fortunate, so i do not want to look at the NEGATIVES to come just yet, i am dealing with it as best i can.
     
  15. Tomsnow

    Tomsnow New member

    Feb 25, 2018
    2
    I am not sure what I should say about my own experiences when dealing with my partners dementia. Other than I feel I have being cheated and robbed of the most beautiful women in the world who I have spent the last thirty plus years with. I feel aggrieved that she was taken from me at such an early age as she is only 74 has being in a nursing home for the last two years after I was unable to care for her at home due to the loss of mobility, caring for her at home wasn't a problem for me as the love we shared was very very strong. As many others all our savings have been swallowed up by the local authority, at first they told me that they would try and put a package together so I could keep her at home but because we live outside the main town it proved impossible, living in Scotland free care is guaranteed as long as it's easy to implement well that's how I see it because they didn't really try that hard to help me keep her at home. Talking about finances if free care is available at home then why do you have to pay nursing home fees when they are put into a home. I go in every evening to give help her with her evening meal, the nursing home care and staff are second to none but what I wouldn't give to have my darling back. Life can be so lonely especially when family are so far away.
     
  16. Toppo

    Toppo Registered User

    Sep 12, 2018
    12
    When we got the official diagnosis (about 9 months after our first suspicions) I was determined to make the best of the time my LO with mixed dementia had whilst still able to enjoy going out, visiting new places, spending time together. I tried to see it as an opportunity that is denied others. None of us knows when our life will end but for my LO we knew that time was limited. I can truthfully say that for 2 years we did more as a couple than we would have done without the diagnosis. Since then a stroke has interrupted that period in our lives as mobility is an issue and determination to do everything himself in his own time. This means that less "gets done" but does not mean that we can't have good times and pleasurable experiences together.

    However, the behavioural and mood changes have had a significant impact on my mental health so that from November 2019 I have been "wary and withdrawn" according to our sons and my own focus and positivity on life has been challenged. The months of this year have gone past with me focusing on trying to become more of my previous positive, playful self. It has taken its toll but I am finally feeling that I can face the future again.
     
  17. Toppo

    Toppo Registered User

    Sep 12, 2018
    12
    Well done!
     
  18. pep57

    pep57 New member

    Apr 24, 2019
    7
     
  19. pep57

    pep57 New member

    Apr 24, 2019
    7
    How useful to read your list of positives and negatives. I am apparently not a very nice person especially when communicating with other family members via social media platforms!! And when one problem arises and is eventually solved lanother problem comes along. I feel like my character and relationships suffer enormously as I lose patience with my siblings and lack tolerance in close personal relationships.

    I hope I am able to achieve such clarity in my thoughts and eventually list all positive and negatives in this way, then just move on.
     
  20. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,308
    London
    Hi everyone :)

    There’s been a few questions on this thread about how your stories will be used by our Media Team, so I wanted to provide you with some clarification.

    Many people who are living with dementia or are caring for someone with dementia do so without being heard or recognised. We want to help change that and to help to amplify the real voices of people with dementia and those who care for them.

    Our Media Team wanted us to ask for your experiences. We started this thread to give you the chance to share your stories on this thread, and what you’ve shared may be used as part of Dementia Action Week as we hope to help change the story about life with dementia. You can find out more about Dementia Action Week here.

    We’re going to ask for more information on how this will work in practice, and will update this thread accordingly.

    If you have any questions or concerns, please let us know at talkingpoint@alzheimers.org.uk

    Thanks,

    Sophie
     

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