Hi Tracy. I am in a similar boat. My Mum also has Crohn's disease and I believe has developed something called Avoidant Restrictive Food Intake Disorder. I keep trying to encourage her to eat. She says sometimes food repulses her. But I try and make her see that eating is part and parcel of her recovering from her hip surgery. But she gets angry too. Sometimes I am at my wits end. Sorry not to offer a solution accept I try and eat with her, even if she eats just a fraction, it's something. A good day might consist of 3-4 mouthfuls of cornflakes and 1/4 slice of toast with some egg in the afternoon. It's a worry.
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Hello everyone. My mom has dementia, unspecified. We have known something was going on for about to 8 years. This year we moved mom (86 yo) into memory care. I am still trying to wrap my head around how someone who still wants to iron her clothes can't remember to change her clothes or put on deodorant. My dad died 2 years ago and mom has forgotten him and thinks a complete stranger on her floor is her husband. She was still fairly good in her memory until dad died and then took a huge downturn. Then when a lady friend died a year after that, another huge downturn. Just in the last few months I've noticed a steep decline. When we lost our dad, we lost our mom, figuratively speaking, at the same time. Her short term memory is now about 1 minute long.
HI
I'm Debbie, I look after my mum who's just turned 78. And alcoholic.
She has vascular dementia and copd. Diagnosed about5/6 years ago. This past year her memory is getting worse, I'm noticing it in conversation. She'll never forget to have a drink though! Lol. and although her walking is slow with a walker She'll get to the shop to buy it. More recently she is sending ME doolally. Says one thing does another. Asks for help as unable to do one day, next day she's able to do it. It's got me back to a 12th step program which is no bad thing.
I'm seriously thinking of getting some help in. But she will not tolerate people with accents. Any advice?
I'm Debbie, I look after my mum who's just turned 78. And alcoholic.
She has vascular dementia and copd. Diagnosed about5/6 years ago. This past year her memory is getting worse, I'm noticing it in conversation. She'll never forget to have a drink though! Lol. and although her walking is slow with a walker She'll get to the shop to buy it. More recently she is sending ME doolally. Says one thing does another. Asks for help as unable to do one day, next day she's able to do it. It's got me back to a 12th step program which is no bad thing.
I'm seriously thinking of getting some help in. But she will not tolerate people with accents. Any advice?
Hello @DebLP welcome, this is a friendly and supportive place. It does sound as though it's time to consider getting some more help in, do you have power of attorney for your mum? It might be helpful to speak to your local authority adult social care team to request a care needs assessment for your mum and a carer assessment for you as it must be difficult for you, particularly as your mum is alcohol dependent too. The link below explains the process in England but it may be different in other areas so your social services team will be able to explain the process if you live elsewhere. Hope that you manage to get some help as caring for someone with dementia is hard and it's important to look after yourself too.
https://www.alzheimers.org.uk/get-support/legal-financial/assessment-care-support-england
Hello I’m Debra and my mum has had vascular dementia since 2015. This March she was also diagnosed with terminal cancer. Her dementia has also become very advanced. She did have 4 visits a day from carers in her own home but this wasn’t enough eventually as she became a worry to be left at any one time. We spoke to her gp/ social worker but were told she was on the maximum number of visits. She has four daughters but we all work so we couldn’t do the in between visits. As a last resort we stressed to the gp that if something more regular wasn’t put in place then we would have to raise it as a safeguarding issue. As mum has terminal cancer she receives CHC and is also fast track. I know from doing lots of research into CHC that she was entitled to 24hr care in her own home. But was refused this time and again. As we were so insistent that something needed putting in place the gp then found mum a bed in our local hospice. She was admitted there 27th June. Since being there her dementia has worsened . She walked into the hospice but is now bed bound. Her behaviour has become increasingly challenging. She can be aggressive and verbally abusive especially during personal care routines. The hospice has now informed us that mum needs to be discharged to a nursing home as they can no longer meet her needs and their nurses are not dementia specialists . They gave us a list of nursing homes and left us to find somewhere. We looked and arranged for one to assess mum but they refused to take her as mum’s behaviour was too challenging for them ( even though they were supposed to be dementia specialists). The hospice has now turned around and said that they don’t think a nursing home is the best place for mum but maybe a dementia ward at QMC hospital but after a meeting to find out more about this we have been told that this would also be a temporary solution. As you can imagine this is really frustrating and makes us angry that there seems to be a lack of provision for people with issues like my mum. I have stressed to the hospice that this isn’t good enough and any moving/upheaval is the last thing that my mum needs only to be moved again in the future. Sorry this post is so long but we just don’t know who to turn to for help/advice on this
Welcome to the forum @Lexie1
I’m sorry to read about your mum’s predicament. From my own experience I know that a lot of medical practitioners are pretty clueless when it comes to dementia. I think what your mum needs is an EMI home rather than one which says it’s a dementia specialist and then can’t cope with normal dementia issues (like getting aggressive and resisting personal care). A lot of homes which say they are dementia homes can only cope with the early stages of the disease.
I’m assuming that, because of your mum’s cancer she also needs nursing care which may complicate your search. My dad’s EMI home had a visiting nurse so perhaps something like this might be a compromise.
I’m sorry to read about your mum’s predicament. From my own experience I know that a lot of medical practitioners are pretty clueless when it comes to dementia. I think what your mum needs is an EMI home rather than one which says it’s a dementia specialist and then can’t cope with normal dementia issues (like getting aggressive and resisting personal care). A lot of homes which say they are dementia homes can only cope with the early stages of the disease.
I’m assuming that, because of your mum’s cancer she also needs nursing care which may complicate your search. My dad’s EMI home had a visiting nurse so perhaps something like this might be a compromise.
Hello @Lexie1 and welcome from me too but sorry to hear about the problems you are having trying to find a placement for your mum. It must be really stressful for you and your sisters to have to deal with all this whilst working, and it might be helpful for you to get some advice from the Dementia Support Line or the Macmillan support line as both are very good at listening and suggesting a way forward, plus they may also be able to put you in touch with local support. Details below, and they are both open over the weekend. I hope that it doesn't take too long to find somewhere suitable for your mum.
https://www.alzheimers.org.uk/get-support/dementia-support-line
https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-support-line
https://www.alzheimers.org.uk/get-support/dementia-support-line
https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-support-line
Thank you for the info. Unbelievably, this is the first time I have heard of EMI. Why on earth do the so called professionals not tell you about this? I have now included EMI in my search for a home. I will go down that route. The only worry I have is that the home that refused my mum was also supposedly an EMI listed home. Thank you
Hi welcome,
Could you swap the strap? My Mams is like a silicone wriststrap so its quite soft and pliable. Amazon sell lots of different straps and your mum could perhaps help chose her own, so she might be more inclined to wear it.
Could you swap it for a pendant? failing all the above solutions can you back the bracelet with felt to make it softer.
I just want to send you a hug. That’s such a long time to be caring for a loved one and saying goodbye
Hi Jenny, could you please advice what your strategies of stress handling are. I am struggling like hell. I have been caring for my 88 yo mother for 5 years, she lives with me, and its only me and my son who looking after her. No help from anywhere else, just respite, a few weeks per year. Mum has become a different person and I am struggling to accept it. She used to be so loving and caring and now she is not bothered, she wouldn t speak to us, would not even say "thank you". I know its her condition to blame but it does not make me feel any better. I feel like its not my mother anymore. It s so sad, I am so stressed and she seems to be so content.
Hey, I'm Alex - my dad is only 65 but has always had memory issues and it turns out he has early onset dementia so I'm just looking to find out more about it and how I can help him.
Hi everyone I’m Andy, I’m a carer for my 81 yo Nan, she was diagnosed in 2019 shortly after my Mom (her daughter) passed unexpectedly I’m the eldest of her 3 grandsons, the other 2 grandsons don’t bother with her, she has some help from her friends but there all a similar age to her so very limited to the help they can give, she’s quite far gone but still quite with it when I try and get professional help ie. Social services involved so I’m not getting any help or support so I feel very alone and I’m struggling and she refuses any kind of help and I have health problems myself, I’ve joined here in the hope that there is someone in a similar boat to me, as I can’t cope with this anymore
Hi all, I'm Steve and I'm currently looking after my Mother 75 who has been diagnosed with Mixed Dementia early this year and I'm looking for tips and advice on what I can do to better support my Mother and also support for myself as it does get really difficult. So I thought I would join this forum after watching some videos from Youtube which brought me here.
Hello, my name is Kate. Mum was diagnosed with Alzheimers (moderate) recently. She was also diagnosed with paranoia, visual and aural hallucinations.
She has had slightly 'odd' (or eccentric!) behaviour for many years, but my fathers death and the isolation of the Covid lock-downs (which were necessary) exacerbated mums cognitive decline. It just dropped off a cliff. She went from being the lovely friendly person we know, to keeping the curtains closed 24/7, sitting with a hammer (for defence purposes) to calling the police on friends and neighbours of many decades.
Ultimately we ended up selling her home and moving her over 300miles to be near me. She welcomed (as did I) this as she was terribly frightened and confused. Once Mum was settled the hallucinations disappeared but they flare up if she is frightened. She is in a lovely flat, where there is a warden. She's in the centre of a market town where she doesn't have to cross a road to access the 'hustle and bustle'. The real wonder is that there is an Age UK around the corner, with dementia-friendly activities that she can join in. Finally after a few years she is getting a routine going and starting to have more time feeling happy, than sad.
I'm here for her, but also for me. A lot of the time I find her so frustrating and full of nonsense. I love her, but gosh, it's desperately difficult to be around her sometimes. I feel always on the cusp of snapping or losing my temper. Why won't she wash? Why won't she brush her teeth? Why won't she spend money on herself? Why wear dirty clothes? I now do the laundry for her too. She can do all of the above, but will not.
I work full time and have a partner who has been ill for three years so mine is the only income (I'm self-employed). I have to take time off to take Mum to her multitude of appointments. I have power of attorney, but always involve Mum. I have to be honest, it's a massive burden. I love her, and will do it, but my god I don't know how to manage her, my partner and work. And do it all with good grace! Because I'm not currently. I'm like an angry bear that's been rudely woken up with tooth ache! Anyway, hello and that was cathartic, admitting and typing all of the above! Thanks.
She has had slightly 'odd' (or eccentric!) behaviour for many years, but my fathers death and the isolation of the Covid lock-downs (which were necessary) exacerbated mums cognitive decline. It just dropped off a cliff. She went from being the lovely friendly person we know, to keeping the curtains closed 24/7, sitting with a hammer (for defence purposes) to calling the police on friends and neighbours of many decades.
Ultimately we ended up selling her home and moving her over 300miles to be near me. She welcomed (as did I) this as she was terribly frightened and confused. Once Mum was settled the hallucinations disappeared but they flare up if she is frightened. She is in a lovely flat, where there is a warden. She's in the centre of a market town where she doesn't have to cross a road to access the 'hustle and bustle'. The real wonder is that there is an Age UK around the corner, with dementia-friendly activities that she can join in. Finally after a few years she is getting a routine going and starting to have more time feeling happy, than sad.
I'm here for her, but also for me. A lot of the time I find her so frustrating and full of nonsense. I love her, but gosh, it's desperately difficult to be around her sometimes. I feel always on the cusp of snapping or losing my temper. Why won't she wash? Why won't she brush her teeth? Why won't she spend money on herself? Why wear dirty clothes? I now do the laundry for her too. She can do all of the above, but will not.
I work full time and have a partner who has been ill for three years so mine is the only income (I'm self-employed). I have to take time off to take Mum to her multitude of appointments. I have power of attorney, but always involve Mum. I have to be honest, it's a massive burden. I love her, and will do it, but my god I don't know how to manage her, my partner and work. And do it all with good grace! Because I'm not currently. I'm like an angry bear that's been rudely woken up with tooth ache! Anyway, hello and that was cathartic, admitting and typing all of the above! Thanks.
Welcome to the forum @KEOut.
I’m sorry to read about your mum’s diagnosis. I’m glad she’s managing to find activities that she enjoys and is happy to attend.
It’s good that you’ve found this forum and great that you found it cathartic to share. I know you’ll find lots of understanding and support here.
I’m sorry to read about your mum’s diagnosis. I’m glad she’s managing to find activities that she enjoys and is happy to attend.
It’s good that you’ve found this forum and great that you found it cathartic to share. I know you’ll find lots of understanding and support here.
Welcome to the forum @KEOut
This is a safe place to get your frustrations off your chest and the best support while you are here.
You really are doing the best for your mother. Now she has settles, perhaps you can try to do better for yourself.
Perhaps you could make enquiries about respiyte care. If your mother has accepted the dementia groups with AgeUK, she may enjoy staying at a respite centre and then you could have a real break from all the behaviours which frustrate you and increase youre anxiety.
It is not set in stone that you should undertake full responsibility for your mother, expecially as you have a husband with needs and a job to go to.
This is a safe place to get your frustrations off your chest and the best support while you are here.
You really are doing the best for your mother. Now she has settles, perhaps you can try to do better for yourself.
Perhaps you could make enquiries about respiyte care. If your mother has accepted the dementia groups with AgeUK, she may enjoy staying at a respite centre and then you could have a real break from all the behaviours which frustrate you and increase youre anxiety.
It is not set in stone that you should undertake full responsibility for your mother, expecially as you have a husband with needs and a job to go to.
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