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So hard to get help

Dixbee

New member
Dec 28, 2021
2
0
So my mum is 97 and still living at home and managing to make meals and to do some shopping at sainsburys not alway appropriate food. My problem is I live 45 minutes away and work on a shift patten of days and nights. i need help to make sure she takes her meds washes herself she cancelled carers and that was the end of social support she apparently can still decide for herself. But I know she misses meds all takes more than she should her gp makes me feel like a pest. Her dementia has got worse and she has a new problem each week to stress over. Lots of phone call all hours night and day untill I go to her.
 

Katie1066

New member
Dec 12, 2021
5
0
So my mum is 97 and still living at home and managing to make meals and to do some shopping at sainsburys not alway appropriate food. My problem is I live 45 minutes away and work on a shift patten of days and nights. i need help to make sure she takes her meds washes herself she cancelled carers and that was the end of social support she apparently can still decide for herself. But I know she misses meds all takes more than she should her gp makes me feel like a pest. Her dementia has got worse and she has a new problem each week to stress over. Lots of phone call all hours night and day untill I go to her.
Hi Dixbee I had problems with my mum when she started off with dementia because she wouldn't go to the doctors I couldn't get help it took me 6 months to get her there and did have to tell a white lie I told her it was for a check up but they would want to ask some questions by the end of that app we had new app for the memory clinic best thing I ever did
Katie
 

MartinWL

Registered User
Jun 12, 2020
1,441
0
There are electronic devices available that release medicines at planned times. I have not used one but it might be worth looking at.
 

Dixbee

New member
Dec 28, 2021
2
0
Hi thanks for your reply's have seen memory clinic gave a big pack of information with lots of phone numbers. All I want is district nurse to go in and give her meds and for gp to do referrals for home visits for her check ups jabs etc but doctor thinks I can just pop her in the car and drive round not that easy. Have tried electronically operated gadgets around the home all this does is cause more problems. Caught her grilling a leg of lamb the whole house full of smoke my mum smashed the smoke alarms with a broom. Have a white board for her helps a little.
 

silkiest

Registered User
Feb 9, 2017
510
0
Hi @Dixbee,
giving regular tablets is seen as social care and not the role of the district nurse, even if your GP referred them they would not accept the referral unfortunately. The fact that your mum goes out shopping will also make it unlikely that they would accept a referral for any other treatments as the service is meant to be for the housebound.
The only times that I have been able to access home injections and dressings for MIL is if they have been essential over a bank holiday period when the GP surgery was closed.
 

Rosettastone57

Registered User
Oct 27, 2016
1,636
0
Hi thanks for your reply's have seen memory clinic gave a big pack of information with lots of phone numbers. All I want is district nurse to go in and give her meds and for gp to do referrals for home visits for her check ups jabs etc but doctor thinks I can just pop her in the car and drive round not that easy. Have tried electronically operated gadgets around the home all this does is cause more problems. Caught her grilling a leg of lamb the whole house full of smoke my mum smashed the smoke alarms with a broom. Have a white board for her helps a little.
District nurses won't prompt her medication , it's not their role. It sounds like your mum has reached the point where she needs the physical presence of someone to prompt her, as you have found, various electronic reminders won't work. A carer would be the best solution, but if you are dependent on social services to supply carers and your mum refuses them, it's difficult. If your mum is self funding and you have power of attorney for finances then you can organise an agency yourself to go in . If not, then sometimes, sadly you have to wait for a crisis, perhaps a hospital stay, before help is needed. If you are going to wait for the GP to organise anything, you're going to be disappointed

It sounds like your mum is increasingly unsafe at home so perhaps a care home would provide the right environment
 
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cards7up

New member
Dec 29, 2021
2
0
So my mum is 97 and still living at home and managing to make meals and to do some shopping at sainsburys not alway appropriate food. My problem is I live 45 minutes away and work on a shift patten of days and nights. i need help to make sure she takes her meds washes herself she cancelled carers and that was the end of social support she apparently can still decide for herself. But I know she misses meds all takes more than she should her gp makes me feel like a pest. Her dementia has got worse and she has a new problem each week to stress over. Lots of phone call all hours night and day untill I go to her.
I've just joined today and didn't realize the location is the UK and I'm in the US. Much of the info is useful except for local contacts. I also find it hard to get any help. I'm a caregiver to my 59 y.o. sister with dementia. It's very hard when we're emotionally attached and I hate when I get short with her because she's not comprehending. I've asked for help also and there's nothing available and in this time of COVID, it's even harder. I can't get her a therapist, which I know would be helpful to her to be able to talk to someone other than me about her issues. Her memory is really shot and I do call her to take her meds when I'm not there to give them to her. I don't leave many of her meds in the house because I'm afraid she'll take too many of the wrong drug and she wouldn't remember. Watching her go downhill each day is hard and I need to be more patient. Hardest thing I've done so far and I know it's only going to get worse. God Bless everyone who is a caregiver and their loved one with dementia. Give us guidance and strength!
 

Violet Jane

Registered User
Aug 23, 2021
566
0
I assume that you have tried a Dosette box for medication. If your mother has capacity to refuse carers even though she appears to need them then you are in a difficult position. If you have a PoA for finances then you can try again with different carers / a different agency. A key safe would enable the carers to enter the house without waiting for your mother to let them in but if she tells them to leave or refuses to co-operate with them then they won't be able to do anything. Sometimes persistence, a change of carer or building up from, say, one or two visits a week can work, but not always. If your mother goes into hospital and the NHS puts a temporary care package in place as part of a reablement type scheme after she leaves hospital your mother might be more receptive to having carers. I doubt that my elderly friend would have accepted carers if they had not followed a reablement care package. As has been said above, district nurses won't give tablets and GPs won't do home visits unless the person is housebound and has nobody to take him/her to appointments. Your mother can get herself to Sainsbury's and so she's not housebound.
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,474
0
Merseyside
I've just joined today and didn't realize the location is the UK and I'm in the US. Much of the info is useful except for local contacts. I also find it hard to get any help. I'm a caregiver to my 59 y.o. sister with dementia. It's very hard when we're emotionally attached and I hate when I get short with her because she's not comprehending. I've asked for help also and there's nothing available and in this time of COVID, it's even harder. I can't get her a therapist, which I know would be helpful to her to be able to talk to someone other than me about her issues. Her memory is really shot and I do call her to take her meds when I'm not there to give them to her. I don't leave many of her meds in the house because I'm afraid she'll take too many of the wrong drug and she wouldn't remember. Watching her go downhill each day is hard and I need to be more patient. Hardest thing I've done so far and I know it's only going to get worse. God Bless everyone who is a caregiver and their loved one with dementia. Give us guidance and strength!
Welcome to TP @cards7up
We have several members from the US so please keep posting.
 

HelpInOut

Registered User
Oct 19, 2021
42
0
It's so hard. Similar situation with my Mam (who won't have tests for dementia/mood) and has deteriorating memory and also lives with my Dad who has a diagnosis of m
District nurses won't prompt her medication , it's not their role. It sounds like your mum has reached the point where she needs the physical presence of someone to prompt her, as you have found, various electronic reminders won't work. A carer would be the best solution, but if you are dependent on social services to supply carers and your mum refuses them, it's difficult. If your mum is self funding and you have power of attorney for finances then you can organise an agency yourself to go in . If not, then sometimes, sadly you have to wait for a crisis, perhaps a hospital stay, before help is needed. If you are going to wait for the GP to organise anything, you're going to be disappointed

It sounds like your mum is increasingly unsafe at home so perhaps a care home would provide the right environment
But if Mum won't accept carers at home then she's not going to agree to go into a residential home.
I think someone needs to get back in touch with Elderly Psychiatry (AKA memory clinic) and get them to reassess Mum's mental status and capacity for making decisions.
In addition, there should be a local council Social care phone number that her daughter needs to phone and ask for an urgent assessment.
Self neglect is a type of abuse, and the local council will also have an adult safeguarding team.
Go to SCIE website (I can't post a link till I've got 10 posts!) Lots of info there about abuse and safeguarding
 

try again

Registered User
Jun 21, 2018
288
0
My mum never wanted carers. I got social service involved even though we are self funding and she managed to get mum to accept the care for 3 weeks. That was three months ago and mum has accepted the visits.
 

Yankeeabroad

Registered User
Oct 24, 2021
30
0
I've just joined today and didn't realize the location is the UK and I'm in the US. Much of the info is useful except for local contacts. I also find it hard to get any help. I'm a caregiver to my 59 y.o. sister with dementia.
Hi @cards7up I’m a caregiver for my parents (both with dementia) who live in the US. Sometimes long distance and alot of the past year in person with them.

Your local Alzheimer’s association should be able to give you support ( it’s not just for those with Alzheimer’s). You don’t say where you are located, but there are often many local senior service organisations that can also point you in the right direction for help, practical support and give you two advice on Medicare and insurance. A free senior guide and quarterly magazine are published in my parent’s local region for example and lots of hospitals, nursing homes, local supermarkets have it. We are using it to source and interview hospice care as it lists every local provider. The guide also gives a lot of good advice on Medicare and types of supplemental insurance.

I found it much easier to access in person support groups in the US than in London and Norway — there seems to be a lot of awareness of dementia where my parents are and a certain pragmatism regarding Covid (social distancing, masking, and vaccination then ok to meet in person) that might be making it easier. Sometimes it’s just making the first call and generally people will direct you onwards if they can’t help.
 

cards7up

New member
Dec 29, 2021
2
0
Hi @cards7up I’m a caregiver for my parents (both with dementia) who live in the US. Sometimes long distance and alot of the past year in person with them.

Your local Alzheimer’s association should be able to give you support ( it’s not just for those with Alzheimer’s). You don’t say where you are located, but there are often many local senior service organisations that can also point you in the right direction for help, practical support and give you two advice on Medicare and insurance. A free senior guide and quarterly magazine are published in my parent’s local region for example and lots of hospitals, nursing homes, local supermarkets have it. We are using it to source and interview hospice care as it lists every local provider. The guide also gives a lot of good advice on Medicare and types of supplemental insurance.

I found it much easier to access in person support groups in the US than in London and Norway — there seems to be a lot of awareness of dementia where my parents are and a certain pragmatism regarding Covid (social distancing, masking, and vaccination then ok to meet in person) that might be making it easier. Sometimes it’s just making the first call and generally people will direct you onwards if they can’t help.
She doesn't have Medicare, only Medicaid. She's set up with a special program due to other health issues and nothing really can be done for her in the home. I take care of it all, though I'm not her legal guardian or POA. I've told her son that he's going to have to become her legal guardian soon, as she's getting worse not better. That would require a move for her to be closer to him, which is about 45 miles away. I could visit by bus as I don't drive. I know she will hate this and don't know what to do to try and keep her in her own place. Going to play it by ear and hope for the best. I'll see if I can find anything local though they won't help her in the memory clinic here due to her alcoholism. Thanks for your response!
 

canary

Registered User
Feb 25, 2014
16,684
0
South coast
Hi @cards7up
I dont really understand the implications of the legal terms and medicare v medicaid, but it sounds like you are in a difficult situation and I do hope you manage to sort something out with regards to your sister.