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Sandwich Carer with young children

Chirpasdinner

Registered User
Jan 21, 2020
32
Hi,
I’m looking really to see if there is anyone like me . It’s long .. beat with
In short. I’m 46 with a six year old and 10 year old . I’ve a supportive husband who works full time ( and the rest ) in a professional job . I’m an only and all the remaining relatives on my side are abroad or elderly. My in laws are retired , live elsewhere far way and have finished just caring for their parents before the past away. I’ve always worked. And paid for all my childcare . My career more or less ended in 2013 when the events took over . Now I do a bit of casual zero hours contract type admin for my husbands company who tolerate my disappearances to support my mum


In 2013 my dad had a sudden heart attack leaving my mother widowed at 79 . It was devastating for her and I’m sure she has ptsd as she found him. To complicate matter I was 37 weeks pregnant and mum ended up in hospital . It was a traumatic horrible time . I ended up trying to sort funerals and then re- enablement with a new born alone. Once re- enablement finished noobe was interested in mum as she is self funding

. They had lived about an hour away . I used to travel up and see them once a week with my eldest son who was around 3 . My mother had suffered a stroke in 2009 but had made good progress . They made no plans for what next after this health scare and buried their heads in the sand. I was too busy with a baby They were pottering along and my dad was the type to “go in forever” my relationship with my had always been a bit fractious as she was controlling . My dad just put up with a lot for a quiet life . I too imagined that dad would go on forever as his mum had lived to 96.


In 2014 I started to recognise something was very wrong and my dad had been covering up for a lot of mums behaviour for a long time . We spent over 18 months trying to get mums house sold so we could move her closer to gain a better control of her situation as she would ring begging for help , lonely etc . We tried to respect her wishes and independence by going at her pace but not really recognising a feature of her early dementia . She was drinking alcohol to cope with grief and was impossible to reason with . To give you an idea the estate agent at one point rang me up and said he could no longer work with her ! She also insisted on being her car brought down that she had not driven since 2009 ! She rejected over 12 houses that were suitable plus the lovely and unusual sheltered housing a few streets away in our nice area with a vibrant retired community. Lots going on for older folk She insisted on a bungalow and then refused to go out or join groups . She went once with me and then made excuses . She just wanted to sit in my house all day and drink tea / brandy in turn - basically keep her entertained and of course cry on my shoulder with her grief. Exhausting as I had two very small children . She never really gave or offered help and I couldn’t leave the children with her .

Slowly as she worsened I got her to our GP but in more than one occasion she rejected all talk of carers even when I begged her in front of GP . We waited to crisis point as she started to hallucinate and got her to memory clinic and then in Feb 2019 my
85 year old mum was diagnosed with vascular dementia after a long battle of probably 3 years to get her to the memory clinic. She had started to hallucinate people in the house and was continually drinking to cope with grief . She rejected the diagnosis and refused to have carers . Social services not interested as she would be self funding and she refused an assessment . I was at my wits end.

Shortly after we had a crisis point of being then admitted to hospital with pneumonia and then an accidental overdose after a failed discharge . She was completely off the wall at this point thinking her sister was an imposter ! Finally at this point I found a care home activated poa which was the one thing we’d managed to convince her of .
Lovely carehome put her back together and me . Mum settled ok there but insisted on coming home Cmt nurse said she knew where home was and she agreed to her she would now accept carers x 3 a day for a bit until “ better” . She agreed to a med safe and alcohol only as a treat

By and large it has worked to keep her safe but we are all desperately unhappy . The carers are great but the regular health crises because she has heart problems, Frequent UTI’s . I take her to all med appointments The nature of here dementia means she glitches like a computer and obsesses about money, shoes, chocolate . Some days she is almost ok . Very companionable and social with carers . She expects me now to call in each day for a couple of hours after work or spend all afternoon on a weekend . Becoming more and more difficult as kids ( lively boys ) needs changing and no longer will sit with biscuits in front of telly . Nothing gets done in my house and I’m overwhelmed with housework that never gets done .

Cmt discharged her in July because she had carers and me and I went back to GP and begged them. To put her back on their books as she frequently call us in early am as she has breathing problems due to circulation . The phone rings at 4, 5 6 and she is terrified . Once upright and sorted 9/10 she is ok but I have to go through the trauma at least weekly now of racing out of door in early hours as she has presses lifeline. My husband is left to bustle kids to breakfast clubs etc . GP said now to call paramedic each time but she does become hysterical and on the occasions I’ve done it she hysterical . She’s refused to go on other occasions .

Anyway if you’ve got through this - thanks for listening . I spent all last week sorting out a prescription when it was clear she had a uti . Picking up all the mental load of carers alerting me she was talking about the house being two separate building , chasing sample getting anti b’s prescribed . Sitting all day to keep her well. Phoning concerned sister . Fitting all this round school run , work etc . On Sunday she called me out at 5 am with another panic . Once sorted I tried to cheer her up being nurse like and Mary poppins and saying she might like to consider a bed that tilts . This blew up into a tantrum so I left sad and fed up but cordial ( I know better than to lose it ) and I’ve avoided her calls for two days . I know she’s ok as I can see reports on carers app . She only has me . I feel so bad . It’s the disease but she has always been selfish and controlling as a mother .

It like death by a thousand cuts. I just can’t keep picking myself up I brought her back from the edge and it’s just awful . I just want family time with my kids.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,941
Nottinghamshire
Welcome to Dementia Talking Point @Chirpasdinner

I think you need to prioritise your kids. Your mum is not your responsibility but I know how difficult it is to detach oneself from that sense of duty. Hopefully your mum has recovered from the UTI and is a little more reasonable but my advice would be to step back and if it all goes pear shaped it’s up to the professionals to sort it out.
I’m not suggesting you abandon your mum, just put her in a position where it’s obvious to all that she’s not coping and needs help.
 

Tragicuglyducky

Registered User
Apr 4, 2016
66
Hi Chirpasdinner,
I’m in similar position to you. I’m 35, my dad married a woman much younger than him and had me and my brother very late in life. He’s 87 and our mum died of cancer 15 years ago. I have an 18 month old and my brothers wife had their baby November just gone. We also don’t like our dad very much - probably a big part is the age gap, he’s very gruff and never had a good word to say about us, after we moved out he only ever called to demand we did x task for him and to complain about the other sibling. Now that his dementia and loneliness is much worse we are trying to get him into a care home. Hopefully within a month. But yes, I can understand some of the challenges and heartache you’ve been having with dealing with your mum and this illness. I’ve had periods where I’m genuinely surprised that my little boy still smiles and toddles to me when I pick him up from MILs because I’ve not seen him for a week etc. I miss him so much. I’ve also described this situation as a death by a thousand cuts. The number of times I’ve had to leave work for my dad, drive to his close to midnight, cancel something because I need to sort something for my dad, last minute leave my little boy with MIL, 12 missed calls during a work meeting from my dad, calls during the small hours, appointments
 

Rosettastone57

Registered User
Oct 27, 2016
1,394
Hi,
I’m looking really to see if there is anyone like me . It’s long .. beat with
In short. I’m 46 with a six year old and 10 year old . I’ve a supportive husband who works full time ( and the rest ) in a professional job . I’m an only and all the remaining relatives on my side are abroad or elderly. My in laws are retired , live elsewhere far way and have finished just caring for their parents before the past away. I’ve always worked. And paid for all my childcare . My career more or less ended in 2013 when the events took over . Now I do a bit of casual zero hours contract type admin for my husbands company who tolerate my disappearances to support my mum


In 2013 my dad had a sudden heart attack leaving my mother widowed at 79 . It was devastating for her and I’m sure she has ptsd as she found him. To complicate matter I was 37 weeks pregnant and mum ended up in hospital . It was a traumatic horrible time . I ended up trying to sort funerals and then re- enablement with a new born alone. Once re- enablement finished noobe was interested in mum as she is self funding

. They had lived about an hour away . I used to travel up and see them once a week with my eldest son who was around 3 . My mother had suffered a stroke in 2009 but had made good progress . They made no plans for what next after this health scare and buried their heads in the sand. I was too busy with a baby They were pottering along and my dad was the type to “go in forever” my relationship with my had always been a bit fractious as she was controlling . My dad just put up with a lot for a quiet life . I too imagined that dad would go on forever as his mum had lived to 96.


In 2014 I started to recognise something was very wrong and my dad had been covering up for a lot of mums behaviour for a long time . We spent over 18 months trying to get mums house sold so we could move her closer to gain a better control of her situation as she would ring begging for help , lonely etc . We tried to respect her wishes and independence by going at her pace but not really recognising a feature of her early dementia . She was drinking alcohol to cope with grief and was impossible to reason with . To give you an idea the estate agent at one point rang me up and said he could no longer work with her ! She also insisted on being her car brought down that she had not driven since 2009 ! She rejected over 12 houses that were suitable plus the lovely and unusual sheltered housing a few streets away in our nice area with a vibrant retired community. Lots going on for older folk She insisted on a bungalow and then refused to go out or join groups . She went once with me and then made excuses . She just wanted to sit in my house all day and drink tea / brandy in turn - basically keep her entertained and of course cry on my shoulder with her grief. Exhausting as I had two very small children . She never really gave or offered help and I couldn’t leave the children with her .

Slowly as she worsened I got her to our GP but in more than one occasion she rejected all talk of carers even when I begged her in front of GP . We waited to crisis point as she started to hallucinate and got her to memory clinic and then in Feb 2019 my
85 year old mum was diagnosed with vascular dementia after a long battle of probably 3 years to get her to the memory clinic. She had started to hallucinate people in the house and was continually drinking to cope with grief . She rejected the diagnosis and refused to have carers . Social services not interested as she would be self funding and she refused an assessment . I was at my wits end.

Shortly after we had a crisis point of being then admitted to hospital with pneumonia and then an accidental overdose after a failed discharge . She was completely off the wall at this point thinking her sister was an imposter ! Finally at this point I found a care home activated poa which was the one thing we’d managed to convince her of .
Lovely carehome put her back together and me . Mum settled ok there but insisted on coming home Cmt nurse said she knew where home was and she agreed to her she would now accept carers x 3 a day for a bit until “ better” . She agreed to a med safe and alcohol only as a treat

By and large it has worked to keep her safe but we are all desperately unhappy . The carers are great but the regular health crises because she has heart problems, Frequent UTI’s . I take her to all med appointments The nature of here dementia means she glitches like a computer and obsesses about money, shoes, chocolate . Some days she is almost ok . Very companionable and social with carers . She expects me now to call in each day for a couple of hours after work or spend all afternoon on a weekend . Becoming more and more difficult as kids ( lively boys ) needs changing and no longer will sit with biscuits in front of telly . Nothing gets done in my house and I’m overwhelmed with housework that never gets done .

Cmt discharged her in July because she had carers and me and I went back to GP and begged them. To put her back on their books as she frequently call us in early am as she has breathing problems due to circulation . The phone rings at 4, 5 6 and she is terrified . Once upright and sorted 9/10 she is ok but I have to go through the trauma at least weekly now of racing out of door in early hours as she has presses lifeline. My husband is left to bustle kids to breakfast clubs etc . GP said now to call paramedic each time but she does become hysterical and on the occasions I’ve done it she hysterical . She’s refused to go on other occasions .

Anyway if you’ve got through this - thanks for listening . I spent all last week sorting out a prescription when it was clear she had a uti . Picking up all the mental load of carers alerting me she was talking about the house being two separate building , chasing sample getting anti b’s prescribed . Sitting all day to keep her well. Phoning concerned sister . Fitting all this round school run , work etc . On Sunday she called me out at 5 am with another panic . Once sorted I tried to cheer her up being nurse like and Mary poppins and saying she might like to consider a bed that tilts . This blew up into a tantrum so I left sad and fed up but cordial ( I know better than to lose it ) and I’ve avoided her calls for two days . I know she’s ok as I can see reports on carers app . She only has me . I feel so bad . It’s the disease but she has always been selfish and controlling as a mother .

It like death by a thousand cuts. I just can’t keep picking myself up I brought her back from the edge and it’s just awful . I just want family time with my kids.
As @Bunpoots has said, your priority should be your children and family. Your situation is untenable and if you have POA and your mum is self funding, then in my opinion, the time has come for 24/7 supervision. There comes a point when the person with dementia's needs outweigh what they want to happen. You have now reached that point. Your mum needs a whole team looking after her in a care home
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Thank you tragic and bunpoots . I am trying to prioritise the kids but she makes me feel guilty . She acknowledges a little but takes very much advantage of the fact I have a modern marriage where my husband pulls his weight equally and I’m left wanting as my attention elsewhere . The kids have witnessed some awful tears and tantrum “ I want to die type stuff from her “ I get up and leave as this is my line in the sand . It’s awful

I went through all the rollercoaster of hospital crisis points and finding a carehome . I know she needs one now . We told white lies to her about how much it costs . When she became ill and we activated poa we have now spent a significant chunk of her nest egg on care probably about 12 k now . She keeps demanding to go to the building society to pay in bit of cash she has squirrelled away that I give to her when ever she asks for it . We keep glossing over it and kicking the can down the road . I did te her she would be paying for her care but I was light on the details as she doesn’t really understand figures . If I told her it £100 a month she’d hit the roof . I’m so exhausted I have the attendance allowance forms but never have the time to sort . I’m always firefighting so to speak

I just can’t bear the inevitability of the falling cliff edge again. Every time the landline phone rings I jump. There’s no one to talk to . My husband is helpful but cannot talk to her . He used to try but has grown to avoid it and has withdrawn . He will do practical stuff for her when asked . When mum was hallucinating she accused him of all sorts . He is a quiet man and not even 40 . He’s had to put up with a lot . My mum complains about him and he’s been so patient with her but he does not pander to her . He tried in the early days to spell things out to her . That’s what I find so difficult - so close to crunch time but I have no back up . The carers are helpful . The best one resigned last week though after falling out with management .

The professionals do nothing as she has capacity . Plus they are overloaded with ss cases . As she hasn’t fallen yet , set fire to anything or wanders off .
 

Chirpasdinner

Registered User
Jan 21, 2020
32
I only have financial . We messed up leaving one signature off on health and welfare and it was rejected I don’t think we could her get to do it now .

I agree she needs 24/7 but she’ll brook no argument about the future . She talks of going home to the part of the country she’s from . I’m usrlesss , her sister will look after her It’s all nonsense and a reasoned conversation is just not possible. It’s the waiting for the crisis whilst dealing with mental load of running another household , carers, appointments plus trying to be light and Mary poppins like.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Hi Chirpasdinner,
I’m in similar position to you. I’m 35, my dad married a woman much younger than him and had me and my brother very late in life. He’s 87 and our mum died of cancer 15 years ago. I have an 18 month old and my brothers wife had their baby November just gone. We also don’t like our dad very much - probably a big part is the age gap, he’s very gruff and never had a good word to say about us, after we moved out he only ever called to demand we did x task for him and to complain about the other sibling. Now that his dementia and loneliness is much worse we are trying to get him into a care home. Hopefully within a month. But yes, I can understand some of the challenges and heartache you’ve been having with dealing with your mum and this illness. I’ve had periods where I’m genuinely surprised that my little boy still smiles and toddles to me when I pick him up from MILs because I’ve not seen him for a week etc. I miss him so much. I’ve also described this situation as a death by a thousand cuts. The number of times I’ve had to leave work for my dad, drive to his close to midnight, cancel something because I need to sort something for my dad, last minute leave my little boy with MIL, 12 missed calls during a work meeting from my dad, calls during the small hours, appointments
Well anytime you want to sound off - you can talk to me - I get it !! It’s really hard. I want to to do my duty by mum but very few of my my peers get it and also people ( school gate ) are very sympathetic and say “ how’s your mum ? “ and I want to say she’s ok atm and it makes even more difficult for me . Isn’t that awful ?
 

Bay21

Registered User
Jul 31, 2013
36
Hi,
I’m looking really to see if there is anyone like me . It’s long .. beat with
In short. I’m 46 with a six year old and 10 year old . I’ve a supportive husband who works full time ( and the rest ) in a professional job . I’m an only and all the remaining relatives on my side are abroad or elderly. My in laws are retired , live elsewhere far way and have finished just caring for their parents before the past away. I’ve always worked. And paid for all my childcare . My career more or less ended in 2013 when the events took over . Now I do a bit of casual zero hours contract type admin for my husbands company who tolerate my disappearances to support my mum


In 2013 my dad had a sudden heart attack leaving my mother widowed at 79 . It was devastating for her and I’m sure she has ptsd as she found him. To complicate matter I was 37 weeks pregnant and mum ended up in hospital . It was a traumatic horrible time . I ended up trying to sort funerals and then re- enablement with a new born alone. Once re- enablement finished noobe was interested in mum as she is self funding

. They had lived about an hour away . I used to travel up and see them once a week with my eldest son who was around 3 . My mother had suffered a stroke in 2009 but had made good progress . They made no plans for what next after this health scare and buried their heads in the sand. I was too busy with a baby They were pottering along and my dad was the type to “go in forever” my relationship with my had always been a bit fractious as she was controlling . My dad just put up with a lot for a quiet life . I too imagined that dad would go on forever as his mum had lived to 96.


In 2014 I started to recognise something was very wrong and my dad had been covering up for a lot of mums behaviour for a long time . We spent over 18 months trying to get mums house sold so we could move her closer to gain a better control of her situation as she would ring begging for help , lonely etc . We tried to respect her wishes and independence by going at her pace but not really recognising a feature of her early dementia . She was drinking alcohol to cope with grief and was impossible to reason with . To give you an idea the estate agent at one point rang me up and said he could no longer work with her ! She also insisted on being her car brought down that she had not driven since 2009 ! She rejected over 12 houses that were suitable plus the lovely and unusual sheltered housing a few streets away in our nice area with a vibrant retired community. Lots going on for older folk She insisted on a bungalow and then refused to go out or join groups . She went once with me and then made excuses . She just wanted to sit in my house all day and drink tea / brandy in turn - basically keep her entertained and of course cry on my shoulder with her grief. Exhausting as I had two very small children . She never really gave or offered help and I couldn’t leave the children with her .

Slowly as she worsened I got her to our GP but in more than one occasion she rejected all talk of carers even when I begged her in front of GP . We waited to crisis point as she started to hallucinate and got her to memory clinic and then in Feb 2019 my
85 year old mum was diagnosed with vascular dementia after a long battle of probably 3 years to get her to the memory clinic. She had started to hallucinate people in the house and was continually drinking to cope with grief . She rejected the diagnosis and refused to have carers . Social services not interested as she would be self funding and she refused an assessment . I was at my wits end.

Shortly after we had a crisis point of being then admitted to hospital with pneumonia and then an accidental overdose after a failed discharge . She was completely off the wall at this point thinking her sister was an imposter ! Finally at this point I found a care home activated poa which was the one thing we’d managed to convince her of .
Lovely carehome put her back together and me . Mum settled ok there but insisted on coming home Cmt nurse said she knew where home was and she agreed to her she would now accept carers x 3 a day for a bit until “ better” . She agreed to a med safe and alcohol only as a treat

By and large it has worked to keep her safe but we are all desperately unhappy . The carers are great but the regular health crises because she has heart problems, Frequent UTI’s . I take her to all med appointments The nature of here dementia means she glitches like a computer and obsesses about money, shoes, chocolate . Some days she is almost ok . Very companionable and social with carers . She expects me now to call in each day for a couple of hours after work or spend all afternoon on a weekend . Becoming more and more difficult as kids ( lively boys ) needs changing and no longer will sit with biscuits in front of telly . Nothing gets done in my house and I’m overwhelmed with housework that never gets done .

Cmt discharged her in July because she had carers and me and I went back to GP and begged them. To put her back on their books as she frequently call us in early am as she has breathing problems due to circulation . The phone rings at 4, 5 6 and she is terrified . Once upright and sorted 9/10 she is ok but I have to go through the trauma at least weekly now of racing out of door in early hours as she has presses lifeline. My husband is left to bustle kids to breakfast clubs etc . GP said now to call paramedic each time but she does become hysterical and on the occasions I’ve done it she hysterical . She’s refused to go on other occasions .

Anyway if you’ve got through this - thanks for listening . I spent all last week sorting out a prescription when it was clear she had a uti . Picking up all the mental load of carers alerting me she was talking about the house being two separate building , chasing sample getting anti b’s prescribed . Sitting all day to keep her well. Phoning concerned sister . Fitting all this round school run , work etc . On Sunday she called me out at 5 am with another panic . Once sorted I tried to cheer her up being nurse like and Mary poppins and saying she might like to consider a bed that tilts . This blew up into a tantrum so I left sad and fed up but cordial ( I know better than to lose it ) and I’ve avoided her calls for two days . I know she’s ok as I can see reports on carers app . She only has me . I feel so bad . It’s the disease but she has always been selfish and controlling as a mother .

It like death by a thousand cuts. I just can’t keep picking myself up I brought her back from the edge and it’s just awful . I just want family time with my kids.
Hello, I'm so sorry for what you are going and have been through with your mum. I know how you feel. I'm 34 with a five year old and a 7 month old, my Dad is 81 and has Alzheimer's. My mum is over 20 years younger than him and they got divorced about 2 years ago, I have a sister but she doesn't speak to my Dad so I am alone, other than my supportive husband, in caring for him. I'm only coping at the moment because I'm on maternity leave, I'm dreading going back to work. I know all to well the guilt of choosing my Dad over my children and the sadness of having to leave my newborn with my mum so that I could attend numerous appointments with my Dad. Guilt coupled with resentment has been particularly difficult to deal with mentally. While I can't offer much advice, I decided this year to keep reminding myself that my Dad has had his time with his children.

Not sure if you know, but some charities, I think age uk are one, will help you fill out the attendance allowance form. I had help from a family member on my husband's side after having it rejected once and it was such a weight lifted.
 

Tragicuglyducky

Registered User
Apr 4, 2016
66
Well anytime you want to sound off - you can talk to me - I get it !! It’s really hard. I want to to do my duty by mum but very few of my my peers get it and also people ( school gate ) are very sympathetic and say “ how’s your mum ? “ and I want to say she’s ok atm and it makes even more difficult for me . Isn’t that awful ?
Oh my god I totally know what you mean! There’s been times when either he hasn’t picked up the phone all day or carers have called to say he’s not at home and all the time im driving over to see what’s going on there’s a part of me that is hoping he’s passed away peacefully in his sleep. Then when I see him alive and kicking - annoyed that I’ve turned up - I’m both relived and disappointed. I wish he would pass away peacefully so the nightmare is over for us all. He’s miserable, I’m miserable. He could live for another 10 years. He WILL live another 10 years he’s that stubborn. My friends ask me all the time about my dad, I can’t be arsed explaining the details of having an elderly parent rely on you. I often say he’s doing OK but really want I want to say is, he’s got dementia, how do you think he’s doing? People expect you to say they’re doing ok, but they just get worse and worse until there’s nothing left. People my age mean well but constantly offer me second hand advice based on what their parents have done to help their grandparents. I get on better with people 20 years older then me because really I should have been born 20 years earlier. I can joke with those people after “unlucky” near misses and the perils of a lunch date with an elderly parent with dementia
 

Tragicuglyducky

Registered User
Apr 4, 2016
66
Hello, I'm so sorry for what you are going and have been through with your mum. I know how you feel. I'm 34 with a five year old and a 7 month old, my Dad is 81 and has Alzheimer's. My mum is over 20 years younger than him and they got divorced about 2 years ago, I have a sister but she doesn't speak to my Dad so I am alone, other than my supportive husband, in caring for him. I'm only coping at the moment because I'm on maternity leave, I'm dreading going back to work. I know all to well the guilt of choosing my Dad over my children and the sadness of having to leave my newborn with my mum so that I could attend numerous appointments with my Dad. Guilt coupled with resentment has been particularly difficult to deal with mentally. While I can't offer much advice, I decided this year to keep reminding myself that my Dad has had his time with his children.

Not sure if you know, but some charities, I think age uk are one, will help you fill out the attendance allowance form. I had help from a family member on my husband's side after having it rejected once and it was such a weight lifted.
Oh my god Bay21! I could cry after seeing you post a little bit about yourself! I feel a little less like a freak now! Having to explain my situation over and over again. Carers of elderly people aren’t our age and they certainly don’t have young children!
 

Bay21

Registered User
Jul 31, 2013
36
Oh my god Bay21! I could cry after seeing you post a little bit about yourself! I feel a little less like a freak now! Having to explain my situation over and over again. Carers of elderly people aren’t our age and they certainly don’t have young children!
You're not alone! I've just read your post above and can really relate. I find myself trying to avoid talking about it because I know my friends aren't really interested and ask out of politeness, which I don't blame them for...we're in completely different situations. I find I end up feeling like I just sound moany all the time so I just say he is doing well.

My Nan also has Dementia, on my mums side, and my mum has said she knows how I feel but without sounding petty she really doesnt. She had grown up children who could support her, not young children who get upset when she leaves to "sort out Grandad again" or moan because they just want to go home after school, not having to go and get Grandad out of bed because he has been there all day.
 

Tragicuglyducky

Registered User
Apr 4, 2016
66
You're not alone! I've just read your post above and can really relate. I find myself trying to avoid talking about it because I know my friends aren't really interested and ask out of politeness, which I don't blame them for...we're in completely different situations. I find I end up feeling like I just sound moany all the time so I just say he is doing well.

My Nan also has Dementia, on my mums side, and my mum has said she knows how I feel but without sounding petty she really doesnt. She had grown up children who could support her, not young children who get upset when she leaves to "sort out Grandad again" or moan because they just want to go home after school, not having to go and get Grandad out of bed because he has been there all day.
I hear you, and I dread when I’m having to explain to my little boy why I’m not with him more. I’ve learned to not comment too much to other people. Most people, at the end of the day, mean well. So I put on my “doing my bit” mask when I’m speaking to carers, social workers etc, my “whole life ahead of me” mask when I talk to my friends, my “just being a mummy” mask when I’m at a playgroup. I’ve learned that my experience is like a jigsaw made up of pieces from different puzzles. The pieces kind of fit but the pictures don’t match but it’s my own unique image. I don’t expect others to fully appreciate how ****** the situation is for me, but its such a relief when every once in a while someone says “wow, that’s tough”. I’m really grateful you started this thread
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Hi guys - it is difficult.I think I get resentful when I hear people complaining about in laws or grandparents being unhelpful. I try not to drone on and do acknowledge that I do drone on!
I too tend to talk to people older. I find a lot of the mum's at the school gate don't really want to hear it . I get a lot of " ooh I really worry about when my parents get older " I often say " Have you discussed it ? Properly ? POA's ? Most people haven't .

On some of the advice the other day received - I've got back in touch with the CMHT who had finally visited mum last week to see how she is doing after I begged the GP in September to refer us back . They have promised not to abandon me and discharge her again . They advised me to switch off phones at night and let mum rely on the pendant in these emergencies. They want to get a better picture on how she just copes without me propping the 3 visits a day up . My husband went to see her last night to check she had enough food and explained I was "ill" . She thinks it is because of work and the children !!! She quizzed husband on bank books and some letter about interest that she remembers getting. She is obsessed with getting to the bank to work out what she has. Luckily we live fairly rural and she is housebound

I got a quote for the night care but you might as well look at residential care. care agency can't put an earlier call in without losing some of mum's team. Tough times ahead. CMT nurse was muttering about DOLS and gathering evidence for weekly visit if mum does not play ball.
It is clear I can't go on like this and neither can mum . Doesn't stop me feeling like **** . Broke dry jan last night ! Will go back to aqua aerobics tonight . Just keep swimming guys!
 

Rosettastone57

Registered User
Oct 27, 2016
1,394
Hi guys - it is difficult.I think I get resentful when I hear people complaining about in laws or grandparents being unhelpful. I try not to drone on and do acknowledge that I do drone on!
I too tend to talk to people older. I find a lot of the mum's at the school gate don't really want to hear it . I get a lot of " ooh I really worry about when my parents get older " I often say " Have you discussed it ? Properly ? POA's ? Most people haven't .

On some of the advice the other day received - I've got back in touch with the CMHT who had finally visited mum last week to see how she is doing after I begged the GP in September to refer us back . They have promised not to abandon me and discharge her again . They advised me to switch off phones at night and let mum rely on the pendant in these emergencies. They want to get a better picture on how she just copes without me propping the 3 visits a day up . My husband went to see her last night to check she had enough food and explained I was "ill" . She thinks it is because of work and the children !!! She quizzed husband on bank books and some letter about interest that she remembers getting. She is obsessed with getting to the bank to work out what she has. Luckily we live fairly rural and she is housebound

I got a quote for the night care but you might as well look at residential care. care agency can't put an earlier call in without losing some of mum's team. Tough times ahead. CMT nurse was muttering about DOLS and gathering evidence for weekly visit if mum does not play ball.
It is clear I can't go on like this and neither can mum . Doesn't stop me feeling like **** . Broke dry jan last night ! Will go back to aqua aerobics tonight . Just keep swimming guys!
If it may help with the post, if you have POA for property and financial, you can get the mail redirected to you. I did this with my mother-in-law, when she got too confused over mail ,especially missing hospital appointments etc
 

Tragicuglyducky

Registered User
Apr 4, 2016
66
Hi guys - it is difficult.I think I get resentful when I hear people complaining about in laws or grandparents being unhelpful. I try not to drone on and do acknowledge that I do drone on!
I too tend to talk to people older. I find a lot of the mum's at the school gate don't really want to hear it . I get a lot of " ooh I really worry about when my parents get older " I often say " Have you discussed it ? Properly ? POA's ? Most people haven't .

On some of the advice the other day received - I've got back in touch with the CMHT who had finally visited mum last week to see how she is doing after I begged the GP in September to refer us back . They have promised not to abandon me and discharge her again . They advised me to switch off phones at night and let mum rely on the pendant in these emergencies. They want to get a better picture on how she just copes without me propping the 3 visits a day up . My husband went to see her last night to check she had enough food and explained I was "ill" . She thinks it is because of work and the children !!! She quizzed husband on bank books and some letter about interest that she remembers getting. She is obsessed with getting to the bank to work out what she has. Luckily we live fairly rural and she is housebound

I got a quote for the night care but you might as well look at residential care. care agency can't put an earlier call in without losing some of mum's team. Tough times ahead. CMT nurse was muttering about DOLS and gathering evidence for weekly visit if mum does not play ball.
It is clear I can't go on like this and neither can mum . Doesn't stop me feeling like **** . Broke dry jan last night ! Will go back to aqua aerobics tonight . Just keep swimming guys!
That sounds like good advice from CMHT! I found with dad that the more I responded the more he’d ask for my help if you know what I mean. When I answered his calls no matter what, I’d end up speaking to him at least 5 times a day about things I can’t do anything about. Then I went through a phase of establishing my boundaries and found after a bit he gave up calling me for unimportant things and only when he needed (obviously this was the early days of dementia). It’ll be a very interesting exercise to see how your mum manages.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Hello - an update from me -the pandemic threw me the most massive curveball I wasn’t expecting . MHSOP basically abandoned me and by late February I was trying to get them to help me get mum into respite where she’d stayed before . She was really unwell and hallucinating the GP practice basically shut down and cpn refused to come out . It was the most terrifying period of my life as we had the ambulance out several times . The cpn said drive her to the nearest nhs carehome .. yeh those . As my preferred carehome was not accepting patients .
The care company offered to put night care as an alternative in which mum sort of accepted after a horrendous showdown on my own with no one to help or support me . Now 11 weeks later and a 14 k bill the whole situation has become unsustainable financially and for me and I will rip through mums savings further if this arrangement carries on . If I can put her in a carehome then I can use the equity in the house
With the night carer we could clearly see mum sleeps little despite taking a sleeping pill and she has lost the concept of time getting up at 3am . I’ve had to still plug the gaps desperately with frequent periods of confusion and we’ve now up the package to 4 calls a day . I couldn’t work any more . I was trying to home school my children and my husband got no work done when I disappeared to sort another situation where the carers felt she couldn’t be left alone or supported through the pandemic .
The last two weeks have been horrendous with a sharp increase in confusion and belief the house is not hers or a duplicate or she needs to go to work . I have had 111 oncall doctors out to give anti biotics for suspected UTIs , spent all day at her bungalow taking breaks when the carers arrive whilst my husband holds the fort at home, home schooling and working . This had now escalated to weekly rather than twice monthly in jan . The hallucinations increased and still MHSOP wouldn’t come out . Mum is bad but does not wonder and has the most amazing social mask . Last night after a long day calming her down a casual observer would not have a clue she has dementia . She was foul beyond foul to me yesterday and I had to drive her all round the town to reorientate her and convince her she was home . She now gets lost in the small bungalow . This weekend she has been prescribed risperadone as I rang the duty clinician and begged him to help me . Bless him he dropped the prescription at the door . The preferred carehome says they will tell me Monday if the covid wing is ready. They have a leak in isolation but not a care they say .? No I’m not sure what that means . But they are brilliant and mum was content last year when she went there . It’s clear she needs best interests doing .
So basically come Tuesday if there’s space I need terrifyingly either convince her ( impossible ) or lie about where we are going and drive her there . Cpn said they could not provide assistance , gp can only bat me back to MHSOP when I’ve tried to discuss with them . Care package manager helpful offering an assisted live in carer package which she can only afford for six months and then what ? I won’t be able to sell the bungalow straightaway as the brilliant home doesn’t take ss cases .

I’m so stressed and sad and fed up of the tidal wave of decisions purely on me whilst being berated by my mother in the grip of her. Psychosis . I should be up there now check on her .
My husband is cross and angry with me today as my mil has found a lump and put pressure on us to break lockdown and visit them overnight next weekend as she is breaking down mentally as she not seen us for months I’d made a half promise a few weeks ago distracted by all of this and deciding to send the eldest back to school and half hoped it be ok by then and of course I have misgiving as well as the stress of hoping mums risperdone works and attempting to get her into a carehome I’m hiding crying in my bedroom . I should go up and check on mum . The interactive carer app say she’s ok . I’ve no siblings and no one to help . Social distancing etc . What am going to do ? Yesterday I was strong and reactive spoke to a million people on the phone to sort the situation as well as try to reorientate mum . Now I just want to get in the car and drive away from all of this .
Thanks for listening . If anyone has suggestions pls help .
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,419
Yorkshire
What a horrible and unsustainable for you all @Chirpasdinner

Might you call the Support Line to talk this through

There's Admiral Nurses too to chat to
 

Woo2

Registered User
Apr 30, 2019
2,943
South East
Goodness me, how are you still standing ! ,what a horrendously difficult situation you are in . I have no words of wisdom or advice I just wanted to send you a virtual hug 🤗and say hang in there , you are amazing . I would def give the helpline numbers a call, take care of yourself and good luck , hope you get the place on tues 🤞
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Thank you I will do that tomorrow I can’t think straight today . And the kids are nearby in our house I don’t want them to hear me crying The last 36 hours have exhausted me . I just read back my Initial op . It’s been a 6 month nightmare . And it was last year and the year before that . I’m so so so done . It just crisis after crisis and each time I think this is it this will be the one that propels her into the carehome via the hospital and now I’ve running out of her money and time. I’m due to go up in an hour . It sounds like the risperdone has worked . I’m almost disappointed . Isn’t that awful ? If it hadn’t I could have called out the ss duty team but I don’t want that the guy warned the sectioning was not nice and what I was trying to do might be easier. I’m sure who for . My mum sounds and looks normal sometimes and younger than 85 years . People keep telling me they knew someone much much worse . How much worse does it get whilst they are supposedly living at home ?
 

Chirpasdinner

Registered User
Jan 21, 2020
32
If anyone can help me . My husband tried to take mum to the carehome today . The sanctioned move by stealth was given the go ahead by the cpn . A best interests was done apparently . The GP was spoken to and he teccomended placement . I placed my youngest son twice in the key worker school bubble this week while I helped mum pack and get ready to go to her new “assisted living community “ which she swears she has seen and visited so we we went along with drlusion to help and assist the move . We explained she’d have a test for covid , we did our best and she agreed .The night care and 4 call package wound up last night . Husband arrived at 9 am . We could see on the app she had paced the floor all night waiting for him . I’ve driven her round the town all week to reorientate her . She refused to go in . She recognised the place from respite even laughing and joking at points amongst tears refusal The carehome did all they could to convince her . My husband took her home . The cpn said she would come out to the home and didn’t . We’ve phoned people all sI’ve ring the GP , I’ve rung ss , I’ve contacted my mp . The night care went back in and my husband dropped off her meds to the 5pm call . The cpn is supposed to come to see her tomorrow . Her return to home was ugly with recriminations and the Anosognosia that nothing is wrong with her . I left the house before it escalated and knowing it was pointless collected the kids from a friend’s garden where they had been left . I cannot sleep . I’m so broken . We’ve told the cpn we cannot do anything else .
 

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