1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    My mom, 76, has now gone into a care home. She went in last September when her altzheimers deteriorated. We go and see her 3 or 4 times a week. It is breaking my heart. She has to eat puréed food as she can't chew and swallow, can't feed herself, she no longer says anything, not a word. Her mobility is not good and it takes 2 to support her when walking. She no longer knows who we are, although she smiles at us.
    I watch her and she looks lost, her eyes are just dead. How do we cope with losing the people that we love to this cruel evil disease? They says it's the long goodbye, and who ever said that is so correct. Does anyone else recognise these symptoms, if that is what they are. Also do you think mom is in the late stages of her illness, no-one seems to want to tell me. Thank you. Xx
     
  2. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    #2 LYN T, Feb 10, 2015
    Last edited: Feb 10, 2015
    Hi Wendy C-welcome to TP, but I'm so sorry that you find yourself here.

    In answer to your question 'How do we cope with losing the people that we love to this cruel evil disease?' I wish I had the answer. As far as what stage your dear Mum is at-even that is difficult to know. Sometimes care home staff or GP's find it difficult to give out that information-I had to be quite forthright in getting the information. Saying that I was told that Pete was probably heading for late stages in May last year-he didn't actually pass until December. So many things have to be taken into account such as physical strength and age etc.Even that doesn't always follow a given path; Pete was only 68 when he died but, out of the fifteen residents in his home, he was the third youngest. Since his passing a lovely resident who was a year younger than Pete has passed-but a lady of 99 who is bed bound is still there.

    I feel very sorry for you, your family and your dear Mum. Value those smiles that she gives you. You may not believe that you are giving her any comfort with your visits but a Consultant once told me that even though Pete no longer knew me as his wife, it helped his emotional health to visit/hold his hand/ feed him etc- and even tell him that I loved him with all my heart. That was easy to do-unlike the rest of the rubbish this vile disease throws up.

    Keep posting my love-you will find a lot of emotional support here

    Love

    Lyn T XX
     
  3. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hello Wendy.
    I feel for you , not that that is any help to you.
    Yes I recognise them , many here will .
    No one ever told us what stage my mum was at but to be honest I never asked. It wasn't that I didn't want to know , I just assumed what stages she was in.

    If you haven't already done so, I suggest you arrange to speak to the GP she is under at the care home.
     
  4. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Thank you for your reply. It's nice to know I am not on my own. I have family, but it's not their mom. We were always very close. Xx

     
  5. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Thank you. Will have a chat with the medical staff at the care home.


     
  6. Blossom64

    Blossom64 Registered User

    Jan 13, 2015
    9
    Hello I feel for you, my mum is at the same stage with incontinence as well. She does seem to still recognise pictures of us but says no words. She is still at home with my dad as sole carer but lives upstairs only since Christmas. She is slightly better in mobility with a walking frame but doesnt go far. It's so sad as many say on here no one realises the emotional turmoil unless they have been there. I wonder all the time what stage mum is at and dread losing her completely but we have already lost her really. X
     
  7. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Thank you all for replies. Blossom64 my mom is double incontinent. If she knew how she was she would be devastated. We are going to see her in the morning. I will never stop going to see her. I just wish she could tell us how she feels and what she is thinking, if she is thinking anything. Xx
     
  8. betsie

    betsie Registered User

    Jun 11, 2012
    250
    Hi Wendy
    My dad is at the same stage as your mum. When I go in I call dad and he looks up, I think he recognises me as familiar but doesn't know who I am. My dad is doubly incontinent, sits all day staring into space or sleeping. Hardly eats ( apart from sweets or chocolates I bring him) and hardly drinks. I agree with the vacant eyes, I took a picture of him at Christmas and his eyes look dead.

    It totally breaks my heart, sometimes I am fine and other days I cry all the way home from a visit. My only consolation is that he doesn't know how bad he is. He would hate it if he had any idea. He has had dementia for at least 10 years and will be 89 this year. Although I love him too bits I just want his misery to end he has no quality of life at all.
     
  9. Blossom64

    Blossom64 Registered User

    Jan 13, 2015
    9
    #9 Blossom64, Feb 10, 2015
    Last edited: Feb 10, 2015
    Hi Wendy exactly when my dad mentioned last week mum knew who I was in a photo he showed her - she just said my name no more. Whilst that seemed good I then wonder what else she is thinking or what she wants to say she was a real chatterbox lol mum is double incontinent and just wears large tena pads no idea of the loo anymore
     
  10. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Hi all. Have been to see my mom this morning. She was asleep when we got there and slept all the time we were there. The latest is she won't let them put her dentures in. She thinks it's food going in her mouth and tries to eat them. I spoke to a higher member of staff and got the courage to ask what stage my mom is at. I was told border line late stages. I am glad I know and now feel I need to spend as much time with her as possible even though she just sleeps. I would miss my mom terribly, but this is so cruel. X
     
  11. Kate and jack

    Kate and jack Registered User

    My mum is the later stages she is 67 still at home and my dad and I care for her,she is double incontinant now,her mobility is weak ,the last week she has been difficult with her food,we are having to feed her more and more ,she is holding food in her hands ,forgot how to reach up to her mouth ......I hate it ,the emotions are so great ,very hard to deal with some days
     
  12. Neph

    Neph Registered User

    Jan 27, 2014
    179
    Sending you a hug, as there isn't much more I can add, My mum is bedridden, doubly incontinent and definately at the last stage of this horrible disease, although she is somehow holding on.

    I keep going and talking to her, telling her what the kids are up to, what I've been up to, I don't know how much of it goes in. Today she didn't even look up when I walked in and said hello. Maybe tomorrow it will be different.
     
  13. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    I have sat this afternoon and read all about the late stages. It does not read well. My mom is definitely there. All the symptoms, she has. One thing I wish is that mom had not lost the ability to talk. She used to repeat herself and it drove me mad, how I wish she could repeat herself now. If only I had known then what would happen. It's nice to be able to express myself to people who understand. My husband is very supportive, but he does not understand how I feel. Thanks for replies. Xx
     
  14. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Today they have told us mom is refusing to have her dentures in. Luckily she is on puréed food as she can't chew. Any hints or ideas please. I'm worried she will stop eating. Xx
     
  15. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil
    My mother is on stage 7. She doesn't uses dentures too. I've read a lot about "salt" on TP. Sometimes she smiles at me. Sometimes she speaks some words. Sometimes seems she don't have balance to sit.

    She ate some hyper caloric food per day, plus some regular food if she want. Seems that she ate anything is offered to her. So, when I visit her, or she is sleeping or eating.
     
  16. Dollydilly

    Dollydilly Registered User

    May 7, 2014
    1
    N/A
    Stages of Alzheimers

    Hi Wendy C. I know how horrendous this is for you. I too am experiencing this long goodbye and my mom cud be in your mom's position soon as this wicked disease continues to run its course. My siblings and I had to make the heartrending decision to put our elderly Mom (84) into the Elderly Mentally Infirm (EMI) Unit of a Nursing Care Home in Jan2014 because Alzheimers had ravaged her brain to the extent that she was too vulnerable living alone. (Dad passed away more than 10 years ago). She was doing so many oddities caused by this disease, eg she hadn't a clue about dressing appropriately for the weather, going out in only short sleeves and summer clothes in winter weather, leaving her door open, pushing her breakfast trolley with unfinished breakfast on it heading to the shops, rescued and returned by caring neighbors or her own carers if they happened to be driving past as they did their rounds in the area. Mom had had a care package in place for over 2 years, they called 4 times a day at meal times and some long visits "sits" in between, and we 4 siblings visited as often as possible on a rota basis to fill the gaps of mom's loneliness in between that but even then Mom cud never remember that anyone had been to see her. So the move to a Home was the best and worst thing ever. Best for Mom, worst for us coz it was the ultimate acknowledgement that this illness had progressed so far and there's no stopping it. For weeks we told ourselves it was for respite and she wud get back to her own home soon but of course that was just wishful thinking. It's been over a year now and it really has taken me that time to fully accept how advanced Mom is. She was assessed as being in Stage 5 within the first 6 weeks of moving into the Home and is now in Stage 7, the final stage. Yet each stage covers such a broad spectrum but I'm glad ("glad" is not really the right word for it, "satisfied" perhaps) that I know what to expect, what's ahead for Mom coz she may plod on for months or years, no one knows. The Care Home staff are brilliant and have always answered our questions honestly and know our mom so well. There's so many activities laid on for all residents to take part in no matter what their ability. Chairbound vacant minds take part in singing and tea dances etc too. My mom still walks and talks and knows us vaguely but is so frail and falls more often now. Falls will increase until eventually she will be wheelchair bound coz her brain will stop telling her to get up and walk and collect things. I'm sorry you are in a similar, even worse, predicament as me, your mom is more advanced. From what I've seen of people who are chairbound, vacant looking and unable to communicate, they still respond to the kindness and love of a human touch and tap their feet (if able) to music and singing. It brings tears to my eyes thinking about what's ahead for mom and that we will lose her further. All any one of us can do is visit occasionally and offer that human touch knowing hopefully that those carers offer it as well when we are not there. I really am grateful that there are so many wonderful people in the world who feel drawn into genuinely caring for dementia sufferers and certainly I witness it in the Home my Mom's in which is very reassuring. I visited my mom 3 or 4 times a week for many months when she first went into the Care Home until it got to the stage where it was affecting me so deeply with sadness that I had to reduce my visits and now I visit once a week or even fortnightly. Mom's in a different world, an Alzheimers world, and visiting such a place can be deeply disturbing but it doesn't mean we love our moms less just coz we visit less. I wud say just cherish the special memories you hold about your mom and do ask for advice from your mom's Care Home Manager about how she is and what to expect. So many people can exist in this chairbound vacant state for years. There's one resident in mom's Care Home who turned 100 years old last year and has been chairbound, bedbound and vacant for more than 10 years in the same Home. It has helped me greatly to know and hear about what stage my mom is at in this progressive disease and what to expect along the way. It doesn't remove the grief but lessens it a good bit and enables me to let her go and let me get on with my life, so I do hope all this may help you in some small way as it has helped me so much reading about yours and so many other people's circumstances as we carry on living on the outside of the Alzheimers mind. Thank you for "listening" & sharing.
     
  17. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Thank you for responses. Dollydilly, I know how you are feeling. It's dreadful what they are going through, and as daughters, to watch our mothers slowly disappear from us. I'm going to see mom this afternoon on my own. Her husband. My step dad, is 98, and is now all alone. I take him 3 times a week, but sometimes I need mom to myself. I will sit with her, hold her hand and she will put her head on my shoulder and go to sleep. She sleeps all the time now. If only she could let us know what she is feeling. Not a word is said anymore. The carers in the home are wonderful, and what we would do without them. Anyway let's all try and have a good Sunday. Xx
     
  18. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    I have been to see mom again today. Her walking was slightly better but still needs the help of two people. They have found mom on the floor a few times over the last week, and of course she can't get up. She won't have been there long as they are checked on frequently. How must she have felt whilst sitting there? The confusion in her eyes is devastating. My poor mom. Xx
     
  19. Kacey

    Kacey Registered User

    Feb 22, 2015
    2
    Hello wendy

    Hi my mum is 74 & for the last 5 years been battling dementia . She is still at home being looked after by my 81year old dad. I live next door & I am really struggling with all the emotions seeing my lovely mum being aggressive incontinent & barely speaking to to us . I have a very supportive husband & son I ave tried to be strong for everyone involved but forgot about myself. Yes I feel very selfish for now worrying about me. You wouldn't wish any of this on your worst enemy. It is a great comfort to know we are not alone . My thoughts are with everyone experiencing this terrible journey. Regards Jude x
     
  20. catbells

    catbells Registered User

    Jun 14, 2010
    384
    Cambridgeshire
    HI
    I recognise most of what has been described. Ask the carers, they tell me "she`s ok". I can clearly see daily deterioration. Cardio Vascular. Now needs cradle sling for hoisting, she cannot hold on to straps. She has been on pureed food for over 1 yr and thicken drinks. Double incontinent for 3years. used to make noises, but now only when moved. Some carers have neverheard her speak. Happy demeanour until she suffered an infection pre Christmas in pressure ulcer on her ankle, her first, but although the ulcer is healing, the progresion of the dementia has taken a huge drop of the past few weeks, and even daily now I can see more loss. She has always been caring, affection, hugging and kissing people, now we sometimes get a weak smile/giggle, she used to kiss me, but now her tonge comes out thinking Iam something to eat. Somedays she will hold my hand, others I hold her limp hand. She is exhausted. Now her care regime is, depending how she is, up about 9am, sit in lounge (she people watches on a good day), I visit daily to feed her, today she kept resting inbetween mouthfuls, leaning to the right, head back eyes rolling, but slowly but surely she ate all her food (essential for healing the ulcer), then bed rest all afternoon. We have a radio on for her to stimulate the brain. Up again to the lounge for tea, then back to bed.
    Three times a day hoisted. Moved 2 hourly in bed even though she has an good hospital bed. We are waiting (now 2 weeks so far) for the thicker night time pads, (protolcol! what a sham, she`ll be dead by the time she is assed and pads delivered!!) (I don`t understand if carers report she needs night time pad, why is an assessor required and why so long) carers have to completely change the bed and mum every two hours! What sort of life is it now for her. I am her only child, so we are very close. I sit in the lounge with her, enjoying our "mummy cuddles" - she is just like a new born. Everyday I think could be her last, and ever day the carers say "shes fine". Like most of us, I cry on my way, smile and laugh when with her cry most of the way home, then more crying as I await "the phone call" even though she is not on end of life care, but I feel she will just slip away in her sleep very soon, I hope so, it would be kinder for all of us. It is heartbreaking. I don`t feel special to her, but she has no idea who I am, but I know who she is, my Mum, and I still need her touch, her smile when it appears, she is special to me and perhaps deep down she knows its her "darling daughter". We have walked the road together for so many years now, how will I cope without her, I daren`t think. I pray nature has been kind to her and others going through this horrible experience, and they are unaware of what is happening to them, and as they draw close to the end, they have no recollection of their own suffering as they decline. Sorry very distressed today (I have been quite calm last year, up until the "drop" caused by the infection pre Christmas), which I am most days. I keep my mind busy. I do wasgijs, jigsaws, but not the picture on the box/I am a secretary to a local archery club, my husband and I enjoy caravanning, so take frequent breaks even during winter. We`ve been busy refurbishing the house and sorting ou the trees/shrubs uin the garden, because when I`m not busy, I`m a mess!.
    Waituing for the day, I can no longer hold her hand and cuddle her. I`m 67yrs old, and still a child at heart and to Mum, how silly does this sound, I better go now as niagra falls has started, so I need to take myself away and calm down before I go to bed.
    God Bless all you witnessing the "long goodbye".
    Heather x
     

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