97 year old mother, living alone. Clearly reaching the end. Who do we contact?
Posted by legalthrow75836@reddit | AskUK | View on Reddit | 142 comments
So my 97 year old mother is living relatively independently.
We take in meals, cleaning, shopping, life admin. We do some personal care. But until the last 3 months everything else she has done independently.
Sadly, her health has declined rapidly. Several falls. Effectively chair bound. It is very sad.
Mentally she is sharp as a razor. Physically though…
She has declined carers, or a nursing home. Very proud. We happy to support her and will continue to do. Staying at home is the priority. It has though gone beyond us as a family to support.
GP is nightmare. We couldnt make that journey. A nurse came last week to take a blood test and that was a fight. But we now feel we’ve reached the point of almost palative care. But there isn’t a diagnosis to say she is dying. 97 years old and she has had enough.
Anybody have experience of this? How do we at least talk to someone about what to do? We just want her to be at home, safe and comfortable.
Timely_Egg_6827@reddit
You need to talk to adult social services. She will need carers and a care assessment. Hospice care is very hard to get even at home. But getting her into the system paramount as it means home visits and district nurse/rapid response team support.
ellencat@reddit
Agree 100%, please contact your mum's GP and explain the situation plus adult social care in your local council.
Your mum is entitled to a care assessment, even if she refuses all care, it means someone has been out to chat with her and you as the family to put some support in place. Plus, her GP really must come out and review her and set up the necessary nurse visits who can sort out her equipment etc. Your mum can remain at home indefinitely and receive great care if she is actually palliative and there is nothing reversible going on.
Take care OP, hope you and your family are looking out for yourselves too as it's very challenging being in a caring role. Don't be afraid to ask for help.
julialoveslush@reddit
I am shocked the GP hasn’t been out already. The nurse should’ve alerted them.
Myaa9127@reddit
GPs are lazy, they don't care unless their jobs are at risk. OPs mom needs a full assessment done by GP to decide if she is now palliative and, if she is, the GP will need to prescribe Just in case meds and get district nurses involved. She also would need a Hospice at home referral, again, can be done by GP or district nurses. And, as a human aproaching EOL, they need to be reviewed by GP otherwise, if OPs mom dies unexpectedly, GP might end up into coroner's court and, nobody wants that, trust me.
babblingspook@reddit
Not shocked at all. All services to do with disabled adults care don't, in fact, care. Especially not GPs. They happily brush you off frequently.
fastestturtleno2@reddit
We did this with our mum who is mentally ill, they'll come in and do the assessment but if OP's mum is refusing care nothing will come out of it. My mum refused care and they can't force it, sadly this will take some convincing on OP's part to get their mum to change her mind, otherwise it's all on OP and their family.
SynthBather@reddit
I had huge problems with my Mums GP, they were not interested at all!
Adult Social Services put quite a bit of pressure on them and they - very reluctantly - did come and visit.
They managed to get me as an authorised contact, which has since made things a lot easier.
Tequilasquirrel@reddit
My MIL’s GP is beyond shit also. She had a massive stroke which she was very lucky to have survived and is dependant on 24hr care from my FIL she can not walk, or leave the house. My FIL has told them repeatedly, has asked for help to get her seen by a DR yet they still say to him can she pop down to the surgery. EVERY TIME.
SynthBather@reddit
This is where adult social services can be of great help.
They can make a capacity assessment, refer to Occupational Health who can look at any adjustments needed to the home, and most importantly get it on record. It may not be a diagnosis, but even these small steps can feel like a victory.
As to the GP, with Mums GP I realised I'd get nowhere. But still contacted them, rang NHS 111 numerous times. Not with the expectation of getting a result, but knowing it was all on record.
There becomes a point where you can turn round and say "you knew about this, and CHOSE not to do anything".
And I totally get the 'pop down to the surgery' thing. My Mum is 90 years old, deaf, dementia, needs a wheelchair to get over any distance - anything more than five feet. The surgery RECEPTIONIST made the clinical assessment that Mum had capacity, and could come down on the bus by herself, and therefore me driving her there was unnecessary.
It's a hard slog, there are no silver bullets, and it seems every time you think things are moving forward, something prevents it or sets you back. But Adult Social Services have been the best help I had.
They'll also do an assessment on your FIL. Not as scary as it sounds, his needs as a fulltime carer will also be assessed, and support given. They know carer burn out is a real thing, and with all the love in the world, sometimes everything just becomes too much and he'll need help and support too.
Tequilasquirrel@reddit
Thank you so much for your reply, I really appreciate you taking the time to help with your experience. It’s given me a bit of relief to know there is something else we can try, I just have to try to convince FIL to allow adult social care referral and assessment. He definitely needs to be assessed too as his health is worryingly and predictably declining since being full time carer.
That is so frustrating with the GP, I don’t doubt a word of your experience, I’ve heard similar from many with family members in this same type of situation. It is really hard going and I hope you and your mum continue to get the help you need 🫶
crochetprozac@reddit
I second this!
Very recently had to contact them due to my sister - she is in her 50s and has been placed in a respite home until adaptions can be made to her property - but nothing seemed to happen for a full year and we heard nothing from the council.
Her mental health started to decline and she became very depressed. I was getting nowhere with the council so the lead nurse of her respite home suggested I contact Adult social care.
At first I was like "Social workers = bad!" But I did it (because I literally had no idea where to contact for help) and they were so damn nice!
Through my rambling about the situation, they advised of a way they could help and, wouldn't you know it, 2 days later I had the council at my door showing me the adaptions that they are going to make - 2 week later and they have a builder on site taking measurements and my sister is getting therapy so she is ready to return home when they complete the adaptions in January.
Adult social care like really, actually do care and if it is within their power, will advocate for you.
Present_Breath_6299@reddit
When I went through this in Cheshire recently many parts of the NHS stepped up and individually they were amazing but it felt like you were fighting the system whilst you wanted to spend your energy on enjoying time with him. We contacted MacMillian charity and they were a great help - it felt like someone on your side helping navigate the multi NHS processes and departments.
Timely_Egg_6827@reddit
Agree - it took us - well me - calling out an ambulance when I genuinely wasn't sure if in terminal heart failure or just more decline. I had tried GP first. They wrote a fairly caustic report to doctor and hospital about recognising when patient had moved to terminal needs and that unlocked a lot. Hospital at home, more district nurse help and just in case meds.
indomitus1@reddit
This. Sending the very best 🙏
flamingochills@reddit
You've had a lot of responses already but I thought I'd add that my council allows you to self refer for a disabled or infirm person and one of the questions is what is their relation to you so you can even refer for a neighbour. It was for an assessment in the house for care needs and aids so might be worth looking into if your GP is useless.
SongsAboutGhosts@reddit
Do you have Lasting Powers of Attorney in place? You can get one for finances and one for health. If you don't have them in place currently, while your mum has capacity is exactly when you want them, and they may well make things a lot easier in the coming months/years.
Equal-Matter9442@reddit
Hi, please contact your GP. They need to involve district nurses to support at home, and adult social services need to organiser carers 4 times a day. If she wants to stay at home you can get the local hospice involved, the DNs or GP can direct you.
The GP needs to do DNAR (do not attempt resuscitation) paperwork and mum needs a copy of this at home.
Just in case medications (injections for pain, nausea, secretions and agitation) need to be prescribed by the GP and ordered and kept in the home incase the nurses need to use them.
Hospice at home is a service that lots of hospices do to keep people comfortable at home.
The end will come for all of us. We have had good lives and we can have good deaths with proper planning. Reach out if you need any advice.
FriendsAbroadSchool@reddit
Live in care? Contact local care agencies 💖
LeftyOne22@reddit
As an American, I'm always struck by how differently our healthcare systems handle elder care. What's the typical wait time for an adult social services assessment once you've made the initial contact?
GlancingBlame@reddit
Adult Social Care. There's no other answer, really, I'm afraid.
From personal experience, I would strongly urge caution in a “must stay at home” mindset. My father would decline help, and his quality of life at home got to be terrible as his mobility decreased. The support my siblings and I needed to give increased significantly, which was particularly challenging when we all had full-time jobs and children at home. Only after a crisis did we manage to get him into a home.
Had we gotten him in sooner, he'd have had a much better quality of life and would have been able to make better use of the facilities. I kick myself regularly for not pushing him harder on it.
slothjobs@reddit
Your mom needs to realize that if she refuses carers, this will create an undue burden and stress upon her family, and potentially trauma inflicted upon her loved ones due to her irresponsible choices.
My Grandma and grandpa did this, and it left us constantly checking to make sure they hadn’t fallen… having to clean themselves after they had defecated all over themselves and their house… thank goodness my grandma was able to die in a hospital, but if we hadn’t found grandpa when we did, he would have been rotting on the floor.
Get social services involved because, again, if she is refusing care—it is incredibly selfish. (Even if she’s just stubborn/means well.) I would not wish what the end of that looks like for anyone.
underwater-sunlight@reddit
If she is of sound mind and is adamant that she wants to stay at home or doesn't want carers, you are going to find things very hard. The care system took a kicking during Covid and never really recovered from the requirement at the time for staff to be vaccinated. Many who left are not going to come back.
major-psychs@reddit
Rennie are a good hospice support where they can visit at home and assist with end of life support. But as others say, get the system invilved, GP would be a good place to start
Safe_Ad4444@reddit
Ahh, I'm so sorry. We went through this with my grandmother who we lost in August. She had been the picture of health, particularly for someone in her 90s. Had all of her marbles and well. Then, she started having falls, turned out to be TIAs. She lived in her own flat within a complex where they sent cleaners and meals over for her. They said she could only stay if she had full time care, and she outright refused. We organized regular care for a short while but she used to shout at them and several refused to go back. After another fall she was found on the floor and an ambulance was called. It's almost a blessing she was so out of it she couldn't refuse medical care. She did a week in hospital then the consultant would only release her to a specialist care home. We had to sell this to her as a short term thing, but to be honest we all knew she was unlikely to make it back to her flat. She wouldn't leave her room at the home, refused food, and started lashing out at staff. She injured one of them so they were then talking about moving her on. Before anyone had a chance to move her she had a cold that turned into a chest infection then pneumonia and sepsis in the space of about a week. She was just so old at that point her body couldn't fight. She passed away after two days in hospital. I keep imagining being her in each of these situations. She was fiercely independent and had been on her own since her early 60s when my grandad died. She had regular visits from the family, but moving out of her house to the flat then hitting the pandemic did her no good, then it was all downhill from there. Such a tough thing for you to decide- if she's fully competent you'll struggle to be able to make choices for her care without her consent. Towards the end my mother managed to get power of attorney for health and welfare so that she could make medical decisions that were in her best interests- if she had chosen for herself she would have had a far grislier end than she got. We basically made sure she was comfortable, surrounded by family and listening to her favorite songs right until the end.
catjellycat@reddit
God, you could be describing my grandad. In his 90s, smarter than the lot of us, on his own in his own home.
He also refused care/help/to anything proactive. My mum and her siblings wouldn’t argue with him but would get very upset about. I said to them, and I’ll say to you, it’s fine to choose not to want the help but essentially what you’re choosing is the choice being taken away from you. So if six months ago my grandad has agreed to carers, he would have had a medical need spotted earlier. Now he’s in hospital with a wholly preventable infection and they won’t let him home without an adult social care plan which is happening to him rather than what would have been with him if he’d done when suggested.
It’s hard when they’re mentally sharp as a tack but also stubborn as fuck. I would have been blunter and more “you’re going to die on the floor with a broken hip, is that what you want?” but my parents wouldn’t do it. I can see why, you don’t want to be falling out with someone in their 90s. But also, it was almost like when you overindulge a child. It’s a much worse outcome than tough love.
patronus1123@reddit
Exactly the same with my grampa. He went from still driving safely and being totally independent at 97 having a few bad falls at home and hospital stays leading to giving up his car and being house bound in just a few months but completely all with it upstairs, just physically his body is declining. It absolutely sucks cus he’s completely aware of everything he’s losing and he’s got so little control of anything now.
I’ve found tough love but giving him the choice albeit none of them are choices he likes to be the best method. “I know you don’t want a medical necklace installing in your home but without it you could have another fall and be lying on the floor for hours before we find you… would you prefer a necklace and be assisted quickly or be laying on the floor a few hours and to be in hospital again?” “I know you don’t want carers in to help you but I can’t physically come 4 times a day to make your meals and help you to bed and if you keep falling they will insist you go into care so would you prefer someone to come in a few times a day so you can be comfortable in your own home or go into a residential care home” “I know you don’t like being made to go to bed at 8pm and it sucks but you can’t go to bed unaided now and that’s the latest the carers can come and I know you don’t want a bed downstairs. But the choice is a bed downstairs so you can watch tv till whatever time you like and get in bed when you want to or continue to have to be helped upstairs early… which would you prefer?” The list goes on… it’s been truly awful but I’m glad to report he’s still living at home, with a carer coming 4 times a day who he really likes now and his beds downstairs. They’ve all been awful options for him to have to choose from but at least he felt he had some control. It’s worked out ok.
RafRafRafRaf@reddit
Your grampa may or may not absolutely detest the idea but see if he’ll try an electric wheelchair. There’s no reason that someone in reasonable cognitive shape should have to accept not being able to get about on their own - even if there’s a bit of dementia and the chair’s not to be used without support outdoors, the mental difference when you can sometimes putter about on your own vs literally where you go, even which way you face being controlled by others… not all will be willing to try but I’ve seen drastic gains in mental health in old folks when they recovered that bit of independence thanks to a power chair. (NOT a scooter, unless they have good upper body strength and balance - they can be a sort of double falls risk, because they’re harder to get in and out of, and don’t fit everywhere the user may want to go, causing them to try to stand up more often…)
missjewel84@reddit
I agree with this so much. Im only young but with declining health, and my powerchair has been life changing. Having that freedom and independence is magical
catjellycat@reddit
I don’t disagree with you at all. Being stuck home can’t be good for you at all. But he won’t. He won’t be measured for a wheelchair. He won’t even have a cheap one bought for him (and I know they’re not great) so he could be taken out.
It’s an internalised ableism. Which is wild in your mid 90s, but hey ho!
LateFlorey@reddit
I’ve come to realise looking after an old relative is like looking after my toddler. We use this choice method with our 3 year old to make him feel in control but get the outcome that we need.
patronus1123@reddit
Absolutely that. I described it to a friend that it was like a role reversal and you’re now parenting the parent.
catjellycat@reddit
I’m pleased this is working well.
I’ve every sympathy for it, they’re not nice choices but all my grandad is doing is making his and everyone’s else life a misery. And it doesn’t have to be like that at all.
I’ve already told my mum I won’t be pussyfooting around her later in life.
patronus1123@reddit
Totally get it. My mums been much the same, not wanting to upset him but I keep saying he’d be much more upset with the alternates. Hope you all find a way through
ambientfruit@reddit
I've had this conversation with my mum too. She has severe epilepsy which has been escalating over the last 5 years or so. We are trying to at least get her into a bungalow as the stairs are becoming a problem but she's stubborn as hell and won't hear about it.
Like you said, all it will take is a bad fit or, god forbid, a stroke and at some point the choice will be taken away from her. Then we'll be the bad guys and it'll suck ass. I'm not looking forward to it.
freexe@reddit
It's sad that he wants to go but we don't have an option to let him go. I wouldn't want to be kept alive for alives sake either.
catjellycat@reddit
I’m afraid it’s quite the opposite! He doesn’t want to go at all! Outraged at the very suggestion.
I imagine it’s that misplaced fear that stops him accessing the help. He thinks “if I have xyz, it means I’m old and going to die soon” rather than, “if I have xyz, it will make my life easier”
Cantbearsed1992@reddit
Sounds like my Dad, 89 says no to any suggestion that might help him, still thinks I’m the 10 year old child, knows better than me, won’t listen to anything I suggest- it’s a real uphill struggle to help him!
snarkycrumpet@reddit
I keep telling my parents this: make the sensible choices now when it's YOUR choice, or I'll be making them for you in a rush and it's my choice...
they are going with the latter. I despair.
Acrobatic_Hat_863@reddit
Adult social care can help.
Lessarocks@reddit
When my mother was dying at home, her GP surgery were amazing. They organised a hospital bed at home, nurse visits, and a team from the local hospice to come in daily for personal care. This was in Scotland though so systems may differ as health is devolved.
QuarrieMcQuarrie@reddit
I live in Scotland, my mum is in England. Trust me when I say the NHS is 100x better in Scotland. I had to create merry hell to get her a home visit on Monday- temp of 102, unable to walk, very weak and totally breathless.
ignoranceandapathy42@reddit
It varies region to region based on available resources and the needs of the area. There are dozens of CCGs et al up and down the country. I would be wary of taking anyone's experiences in the NHS and comparing like for like.
FWIW we lost my FIL after 2 years of battling cancer at the start of this year, and we went from him living independently to having a hospital bed within 2 weeks and then 6 weeks later he was gone. The English NHS in my experience was incredible and I literally could not have asked for any more, GPs, nurses, carers and equipment all came as soon as requested and no charge for any of it.
I'm sorry you had a horrible experience with your mum.
QuarrieMcQuarrie@reddit
Apologies, it's been a frustrating week. When my brother was in hospital last year the NHS was amazing- I am just shocked how difficult it is for an elderly, sick person to get any help in this area- everything is online and although she's fairly tech savvy, she's not capable of filling in e-consults etc right now.
ignoranceandapathy42@reddit
No sorry necessary, you had a bad time experience and no amount of others having good experiences will counter that you know. I just wanted some contrast for our chronically online US counterparts who are inevitably reading looking for a sign of our impending collapse under socialized medicine.
appletinicyclone@reddit
yeah its very variable
efitchuk@reddit
We only got this kind of support (in England) from MacMillan, not the GP at all. He hadn’t even put Mum on a catheter until we asked for it to happen, during the last week of her life when she couldn’t get out of the bed. MacMillan were Incredible though
Greendeco13@reddit
This happened for my Mam in Salford, it was amazing. She got to spend her last days in her own home, surrounded by her family caring for her. The nurses came daily to check on things but were not intrusive.
It can be done and should be, don’t be afraid to be pushy, and advocate for your Mam.
Skylon77@reddit
You want her to be home, safe and comfortable. Sounds like she is home, safe and comfortable. Sounds like you are doing a great job for someone who is clearly approaching end-of-life.
If you are happy to keep doing it, then carry on.
If not, then you need to get social services involved. But then she may not end up being home, safe and comfortable. There comes a point where compromises need to be made.
helenahandcart@reddit
GPs can be wilfully awkward. When my Dad was nearing the end, they were obstructive, unhelpful and cold. It reignites my anger just thinking about it. Social Services were wonderful. Luck of the draw I expect.
ArtfulThoughts@reddit
Your mum needs someone with her. You need to decide where it’s best that the care comes from and what coincides with her dignity.
My aunt was like this. She was able to pay for a private carer who became live in, she had moved countries so my aunt felt she was doing her a favour by helping establish a life in the UK which meant my aunt didn’t feel like it was just because she was infirm.
For bloods we had a local private phlebotomist who would come round so we didn’t have to do trips to the GP or doctors and she saw it as paying for convenience, not being a dependent patient.
jojojojojojoseph@reddit
If they are of sound mind, and are refusing carers, then absolutely 100% leave them to it.
lizzstirl@reddit
You need to make an urgent referral to adult social care. If she has savings of over £23,250 she will be expected to fully fund her own care, if not she will be expected to pay a portion however regardless of money she/family are entitled to an assessment, advice and support. She may also be entitled to health funding however this can be difficult to get. I would also recommend a referral or some research around assistive technology such as a lifeline bracelet or pendent she can press if she falls. On another note if she is still compos mentis get all necessary paperwork’s in place. Lasting power of attorneys for both health/welfare and finances. Do not resuscitates. Wills etc. She’s done amazing to make it to 97 living at home!
Neil2250@reddit
I haven't much to add, and im sure you've got videos. But please tell her to tell some stories or messages to you while you record.
The feelings on this will vary by person, but if I reached the point where i'd be feeling like i'd "had enough", i'd still want bits of me telling stories to be recorded. tell her this is her chance to be snarky, silly or honest (if you're not in the room while its recorded).
Twidogs@reddit
Make sure power of attorney is sorted out as soon as possible , speak with banks etc and make sure someone can speak to them on her behalf . As others have said get a care assessment done by the district nurse which is usually coordinated through the GP . Also as others have said make contact with local authority social services. Then begin looking at local nursing homes as that is very difficult in most areas and you want as much information as possible. Hopefully this helps and always remember your doing your best for her especially when the decisions are difficult
MsChewbacca@reddit
Slightly different situation as ours was a terminal illness, but I found our local hospice to be incredibly helpful at signposting other resources. They were very plugged in locally. My mum's GP was absolutely rubbish but my own GP surgery was incredible, as I had moved her in with me I was able to switch her, I doubt this is as easy an option for you but worth considering. The doctor biked uphill in the rain after hours for a home visit, really amazing support.
Good luck to you and your mother. I assume you've already also thought about things like cameras, fall detection, emergency buttons, automated phone calls etc. - these are a hit on pride, my granny didn't like them much, and I bet even if she had fallen she wouldn't have wanted to impose... It's so challenging with the pride but I can understand it too.
Additional-Guard-211@reddit
This is a common theme but its worth understanding the Mental Capacity Act 2005 and its 5 principles. But from what your saying she has capacity to make those decisions, no amount of shouting will allow professionals override that- I say this because there are lots of comments here saying she needs this and that, but you have already said she is declining this and that her capacitous decision and thats the bottom line. This doesn’t stop you from contacting services and seeing what support she could get, seeing what occupational therapy support she could support her to remain at home for example and present those ideas to her as her remaining as independent as possible.
jeminar@reddit
If you have money, you can get private care in home. Problem is it takes a while to say up so if you take that route start phone calls now
BellligerentBill@reddit
God bless her
JER2501Derby@reddit
She has capacity, she wants to stay at home with dignity and respect, as a family you can find a care provider who gives her this, you say she had falls, has she been seen by OT? She might be able to get back to pre fall base with support, as a retired Social Work frontline manager, what relatives expect and what the person referred wants is miles apart
WPKenny@reddit
Spot on. Community OT here. In my area patients, carers and relatives can self refer by called the LRU (local referral unit) so do a google to see if there’s one in your area. It means you don’t have to mess about waiting for the gp to refer. They will then call and do a quick triage and prioritise. Based on your description, you would likely get an OT out for a home visit within two weeks, usually much less. Issues surrounding toileting (using, getting to etc) are often treated as a higher priority for the team too.
Angryleghairs@reddit
This is the answer
Active-Answer1858@reddit
Bang on. As a community OT this is my bread and butter. GP needs to be referring to community therapy for comprehensive falls assessment and future planning. She may well be declining but she might have a while left, you never know - she and the family deserve the right support for that.
laeriel_c@reddit
Great advice. She needs a PT/OT assessment and get some adjustments put in place at home to reduce the risk of falls, if she's adamant about staying there.
Dartzap@reddit
My gran recently passed at 97. She was starting to lose her marbles, but was still independent.I went to see her for her birthday at the end of August. She went to see her 98 y/o cousin the following day who from I have been told presented as "lights were on, but nobody home"
My gran then quietly decided that she didn't wish to become like that, and went on an unannounced hunger strike.
She ended up in hospital for organ failure for a week, got discharged without a care plan.
Eventually palliative care was put in place, and we went to her funeral last week. She went in peace, thankfully.
I would encourage you to atleast talk to the GP again.
My family experience was that the hospice nurses and HCA's who helped gran at the end were great but the NHS services were to stretched to care.
I hope your mum is as comfortable as possible, and that you are able to cherish your time together.
97 is a good innings, and I can only aspire to stay around as long.
Peasnoop@reddit
My Grandma was 97 and was totally compos mentis, but she suddenly became ill for the first time in her life. Her first ever visit to a hospital and they found a huge tumour in her stomach that they estimated had been there for 10 years or so. Because she was so mentally well, the surgeon decided to operate (said it was the fastest he'd ever performed an op) and she was actually recovering in the hospital unbelievably well.
A stoic, very independent 4'9" lady who didn't want to accept help or strangers in her home, she overheard the nurses discussing with my mum that she would need home care going forward. She literally died 12 hours later, the day before her 98th birthday.
Angryleghairs@reddit
If you're concerned for her welfare, you could try social services. However: if she is of sound mind, she has the right to refuse all care and stay as she is. My advice: ensure she knows what the options are for more support at home. Contact "help the aged" for more guidance
legalthrow75836@reddit (OP)
Very sound mind. She do it alone before accepting 3rd party help. Money is a factor, we’d happily pay for private help. She has refused anyone but family, and as far as she is concerned, she is a burden and we don’t have to go round.
lydz1985@reddit
You'd need an advanced care directive, that indicates unless absolutely necessary she wants to stay at home and not be taken into hospital. You'll need to liaise with her GP and social workers.
legalthrow75836@reddit (OP)
Thank you.
Part of the issues is the refusal. She is keen to pass quietly in her sleep. Having carers or people in she wants to avoid.
I think our issue is, we can support this, but clearly the medical care / quality of life we can’t improve.
Begging the GP receptionist for a home visit repeatedly got us a nurse and a urine, and blood test. The GP is aware of her age and medical conditions. But having a sensible conversation about how we improve things whilst respecting her wishes to stay home isn’t something they are able to have.
Additional-Ask-5512@reddit
These are the last of the WWII generation (95+). That have clear memories of the war and grew up and were formed during that period. And they were formed of pure grit and steel. Maybe even had to help out in some way. Despite being so young back then.
They are just so stubborn, for want of a better word. It's not meant in a negative sense. They don't want to be a burden so will naturally just refuse any help, any care home, any carers. They wouldn't move out and just want to die in their own home they worked so hard for. It's really sad and at the same time inspiring.
She is entitled to help, even if she doesn't want it. I think she might accept carers coming to the house at least a few times a day. Others have given more practical advice on how to achieve that.
I'm not sure I've helped in any way at all. I just teared up thinking of my old grandma in a similar situation.
legalthrow75836@reddit (OP)
Youve described it very well.
Despite the lack of quality of life, refusing help and pride js something she can do.
She appreciates what we do, but doesn’t think it is necessary. Falling why making a sandwich is our worst nightmare, but for her, she’d do it if she had to. Stubborn is the word.
Lukester555@reddit
Are you sure she doesn't have a UTI they can often cause these symptoms if they go untreated?
legalthrow75836@reddit (OP)
Hi. Thank you for reply.
Good advice. Yes. UTI has been checked. There was low level trace of one. 7 days of antibiotics and 5 days on from that and overall situation hasn’t improved.
MingePies@reddit
This might sound strange to some but it deserves to be higher up. My father developed a UTI in the early stages of his dementia and it was like it fast tracked his condition. He endured delirium and was physically distressed.
A urine test confirmed a UTI, which was treated and the symptoms went away within a couple of days. The doc said that this was not uncommon and can often go on for longer than necessary as it can manifest earlier than regular UTI symptoms and it may not be a link some people will make.
mordhoshogh@reddit
Second this. I worked as a carer and saw many cases where I would’ve sworn they’d be dead by my next shift, only for a dose of antibiotics to bring them right back.
tiny_watermelon1989@reddit
We were in the same position with my grandma at 97. It all got too much for the family to do so we got the council in to assess her needs. She was very reluctant to have anyone helping with anything let alone personal care. She reluctantly agreed after seeing how upset and overwhelmed my mum was getting. She now happily has carers in 4 times a day to help her with everything, I think her seeing how much better she feels not having to struggle really helped. She was very much of the generation to just get on with it and didn't want to lose her dignity. Now she accepts showers, close changing and help with going to the toilet and has become much more happy as a person. We just want her to end her days in her own home comfortably and I think she finally accepted that too.
BlackadderIA@reddit
Have a look into if your NHS Trust has an Urgent Community Response Team.
My dad cared for my mum who had dementia and when his health went rapidly downhill we didn’t really know who to call either. Someone told us about the service and we got the GP to send a referral. Literally within two hours there was a nurse and physio at the house. They did a full assessment, arranged things like carers, mobility aids, beds, sorted referrals etc. Their aim is to reduce hospital admissions by allowing people to continue to live comfortably at home.
The biggest bonus was having uniformed staff in the house. My dad had been adamant he wouldn’t pay for carers, he’d even agree to our faces and then cancel them as soon as we left. Eventually he would just refuse outright. However, as soon as someone in uniform told him he needed carers he couldn’t arrange it fast enough.
happylurker233@reddit
We had a similar situation a couple of years ago, nana was the one deteriorating and my grandad looking after her. He said he could do it alone, that they didn't need help.
My mum and aunty were going down and sorting things but also working their jobs around it, neither one drives so depended on buses and taxis.
After a fall and still refusal of help. I spoke to ny grandad as I wasn't happy with his selfishness of help.
I basically said "No one's saying you cant look after her but nana need some dignity for washing and some other bits. Can't you see how stressful this is for your daughters? At this point its not just about you. Nana might need more care soon because shes showing signs of dementia and we need to start the ball rolling asap so she doesn't suffer."
I think he appreciated the bluntness because everyone was trying to be nice. In the end he accepted the help and six months later we got the dementia diagnosis alongside a cancer one.
When it was the end, we got care and hospice at home
Distinct-Childhood71@reddit
The area probably has a palliative care coordinator who will help. But the GP is the route to that, as people say here, be pushy. Good luck. There is resource available for your mum and you might be surprised how good, just need to get on their horizon.
fuzzelduckthethird@reddit
Get power of attorney for both financial and medical. This will make things a lot easier when it comes to red tape.
Also see if there are any services such as community buses and day care centers, which can help take the burden off you
Rosums@reddit
So while I agree with everyone here that you need social services input the first person you need to talk to is your mum. If she’s previously declined care/ help from the GP she is likely to again. Social services will do their assessment mum will say she doesn’t want carers and OT input and that will be that. She has capacity to say no even if everyone thinks it’s the wrong decision. Have a very frank discussion with her that you are worried about her, that you are not coping, that all this is not to say she can’t do anything anymore but that this input will keep her at home longer, hopefully until the end. Alternatively she will get to crisis stage and potentially lose that ability to have a say in decision making. I’ve worked in elderly care for 13 years and I love them but that change from being independent and looking after you to you looking after them and needing more help can be tough.
Personal_Window1366@reddit
Ask GP for referral to district nurses. They provide EOL care at home :)
zaida_rae@reddit
Please do visit the Carers UK website for help https://www.carersuk.org/help-and-advice/practical-support/
They also have a helpline - for more bespoke advice in your area drop the helpline an email to advice@carersuk.org
Wishing you all the best, it's not easy but once you get some advice hopefully you and your mother can get the support you need
Any_Suggestion7619@reddit
You can do a self referral to adult social services. They should come and assess her and what needs she has.
You mentioned falls. Ensure every fall she gets checked out at hospital. If for whatever reason she is admitted for monitoring dig you heels in about home assessment before she is discharged and tell the hospital you want have her discharge into your care without one
The issue is if she is still deemed able to make her own decisions and is refusing carers then it’s not on any system to force her. She had to be accepting of help.
You need to talk to your mother in that case and tell her you are providing care for her but it’s not as regular as a private carer or agency care could provide. It’s too much for you and without sound rude your not trained to be moving and handling. It’s a danger to her.
Most agencies offer end of life care with a view to keep the service user I. Their own home as their Healy declines. You have to have the Ernest talk with her and tell her you can’t continue to do her personal cares as her needs grow. Tell her she may not want the help but you desperately need it as this isn’t a sustainable situation. I would ask to speak to social services first before they did an assessment for you mother so you can tell them where your limits for adding her start an end so they can support you in advocating the right care plan for all involved.
JRAWestCoast@reddit
Same with my grandma. Very independent and stubborn, and she demanded to continue living alone in her own place. Then, very sorry to have to say, she inadvertently fell and could not get to a telephone. She was on the floor for a few days until my father found her. At that point, she was finally willing to move to a well-staffed living facility where her needs were met. She was much, much safer, reasonably happy there, and she lived another 9 years. Bring in whatever team you need to convince her that she might fall, hurt herself, and be alone for days. Please do this. It would be awful if she fell and had no assistance. Good luck to you. <3
Nibbles1348@reddit
Yea this sucka. My Grandma was so stubborn. She was born in her house and so she died in her house.... she stayed dead in there with my grandad having to past her corpse to get to the bathroom... because her dying wish was to stay there until her funeral. In a warm house... in the summer. Sometimes, you shouldn't give them a choice.
swisssf@reddit
What does "GP" mean in terms of it being a nightmare?
What does she want to do if she's sharp as a razor?
Has she done physical therapy? Would she consider a temporary rehabilitative stay somewhere? In what was has her health declined rapidly--do you mean something beyond her mobility, strength, balance, endurance?
MissMillie61@reddit
My mum very similar
taulish_paul@reddit
To add to all other advice: if appropriate, there are care providers who can arrange an experienced live-in carer at home. If it works out well they can be a friend, and help run the house. I've seen this work well, but it can take a few goes with the provider to get the right person - which is of itself challenging for the old person. But they can be marvels. If you have to pay they have in the recent past been a bit cheaper than a care home - but fundamentally having a person working away from their own life 24 x 7 isn't cheap.
Sillygoose_2442@reddit
Check into home hospice care
Acceptable_Fan_7193@reddit
Hello. I'm a Physiotherapist working for the Rapid Response team in the NHS. It sounds like she needs a therapy assessment to identify her equipment needs at home. Please contact her GP and request an urgent home visit to review her (if any signs of infections, medically unwell, etc.) Ask them to refer her to the Rapid Response service within your area. If she is effectively chair bound, she is at a high risk of developing pressure ulcers on her bottom. She requires an urgent therapy assessment at home to prevent admission to hospital.
jamesnow06@reddit
Your mother should be living with family she should not be left to live alone. If she can't live with any family you should contact social services if things get really bad then people are forced into a nursing home if they can't be on their own. My grandad was near going into a nursing home he was incontinent and wetting himself and struggled to walk. They had carers go in but he wouldn't accept help. Then this July he passed away in his sleep he was 94. And one of my nans is 87 and had a hip replacement last year since then she's been living with her daughter and her daughter is retiring so she can look after her mum. It's tough when family get old.
Sea_Pangolin3840@reddit
They cannot force anyone into a care home of she has capacity to make her own decisions. You need a deprivation of liberty ruling or nothing you can do
jamesnow06@reddit
Exactly, Something like the mental health act or like you said. If someone lacks mental capacity.
EchoOfaMoment@reddit
Adult social services - there should be a number somewhere for your local first contact team. She should be able to get carers visiting her at home 4 times a day. If she needs two people to stand/transfer they will come as a pair otherwise she would have one carer. Morning visits can be 30-60 minutes to help get up/washed/dressed have breakfast etc. Lunch and tea usually a bit shorter to prompt meds, assist to toilet and heat pre-prepared meal (they can usually only use the microwave not the cooker). Bedtime again can be 30 minutes+ to get ready for, and settled in to, bed. She should also have a community alarm or whatever the equivalent is in your area - pendant or bracelet that she can press at any time to get through to social carers who will respond if needed. You can get a falls alarm which is the same but alert them to falls without the wearer having to press.
Attendance Allowance - make sure to word the forms to show her at her worst. You don’t need a diagnosis. That can give you something towards private care. This is not means tested.
Ask the district nurse/her GP surgery if they have any services that will come out to the home. Locally for me it’s an “Enhanced Care at Home” team. Nursing staff who can do a more global assessment and see if there is anything they can suggest to help. They may offer or refer for (or you can ask about - do this if they don’t have a team to coordinate too) - - community occupational therapy to assess what equipment would benefit her at home (grab rails, bed rail, commode, raised toilet seat, electric bath seat, special cutlery/cups to help her eat) - falls team if they think it’s necessary - physio to assess for walking aids (stick, zimmer, 3 or 4 wheel walker, wheelchair to help you get her out) and to see if they can help with balance and/or strength - occupational therapy (likely a different team from the equipment folk above) to possibly come out and assess whether there is any help they could offer in doing activities of daily living - dietician if she is struggling to eat as they may be able to offer Ensure drinks for example
Does she get her medication delivered in a Venalink (weekly dispensing pack so you’re only popping one time of day out and not all of the individual tablets)? If not, speak to GP and local pharmacies to find one who has availability to do so.
Also make sure you are all taking regular breaks. Carer burnout is real and happens fast sometimes. If there are more people who can be available and some sort of rota worked out that works best. You need to have chunks of time (even just a day) where you don’t need to worry about the phone ringing because someone else is looking after things. 💙
bettertree8@reddit
Do you live in the US? If so call your county and see what services are available
Difficult-Beat5533@reddit
Sounds like a solid plan! Hope they can get the right support in place to keep her safe and comfortable at home…
missnehaali@reddit
My great gran was really similar, 102 when she eventually passed away at home. One if things I remember with her was they already had a do not resuscitate form in place beforehand, so the ambulance wouldn't try cpr when called. At her age and condition, it wouldn't have given her much more time, and would have been extremely painful and likely broken ribs.
Picklepicklezz@reddit
Just one other point I dont work in the care sector but I do deal with queries from relatives
MawsPaws@reddit
My mother in law lived in her flat until she was 104. She had a carer come in twice a week and her son spent every afternoon with her. She had quite a lot of falls, some resulting in hospital visits. Eventually she decided to go into a nursing home, but that didn’t stop her from falling. This photo is the day she left the flat for the nursing home. She broke a hip at 105 and returned to the nursing home after the surgery. She was bed bound after that, and we organised a wheelchair for her so we could still take her out. She died at 106.
Vauxxie@reddit
Personally as someone who works in healthcare and cared for my own centenarian relative, let her live out the rest of her years with decency and respect. A significant change in environment is traumatic and for someone who has reached the age of 97, who has been in control for most of her life will not react well to that control being taken away.
The best thing that you can do OP is ensure she has the reasonable adjustments made at home, it's not about prolonging life at this phase of life, it's about making the most of it. I can only hope that my partner and I make it to that age in our own home or with loved ones such as you.
Cherish the next few years, celebrate the fading memories and nostalgia. Feel free to ping me a message separately if you need advice on NHS support services. Otherwise please do pass on all our wellwishes to your mother, lots of good vibes in the comments.
Dd_8630@reddit
If she's 'sharp as a razor', then have you considered asking her? What are her wishes? Does she want to go into care? Is she content to be chair-bound and pass away in her home?
There is your answer.
She has actively and knowingly decline these things, and medical professionals do not believe she is close to death.
She's 97, which is advanced indeed, but she could simply recover and live till she's 110.
With all due respect, it sounds like she's intelligent, aware of her situation, and has made her decision.
It sounds like that's exactly the situation she's in. She's home (and has actively rejected going elsewhere), she's safe (she's chairbound, has received treatment for her injuries, and doctors don't believe she's terminally ill), and she's comfortable.
What is it, exactly, you want to do? If she's expressed her wishes, then that's the end of the discussion.
kiradax@reddit
She's going to need a care assesment: https://www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/getting-a-needs-assessment/
There comes a time where pride is superseded by need. Sounds like you're there. She's going to find it undignified but she sounds like she does need a bit of help.
Inevitable-Parsnip67@reddit
Oh absolutely. We were exactly there a year and a half ago. My father eventually died last September, at 94. He lived entirely independently until the February of last year, when he was hospitalised for a gall stone. Three weeks later he came out unable to walk. Up until then he had walked down (and then up) the hill to the very hospital he was in twice a week to volunteer in the radiology department. We got him into a care home for a few weeks but he insisted on going back home where he ended up with 24 hour care. He lasted six months. We didn't pay a penny for the care, it was paid for by adult social care, although this was about to run out and we would have had to appeal to get it to continue. His favourite refrain was 'hasn't somebody got a gun ?" When he finally died it was such a relief because we all knew that he had finally got what he wanted.
Boatjumble@reddit
Jesus.
Expression-Little@reddit
As someone who has worked closely with the ageing community:
1) Your GP might be useless, but adult social services are way less useless. You need an advanced care plan. This means talking about a do not attempt CPR (DNACPR) and a hospitalisation policy.
2) Palliation services are weird. If you have a loved one on the books to die you're on their list, but if they don't they're technically still there on the back burner and their case can be re-opened in hours. In my area at least they can get hospital equipment to patients' houses within 24 hours.
3) Legal issues. Does anyone have lasting power of attorney in terms of health/finances? Because at this point it's important to avoid loopholes and extended paperwork.
4) Get the district nurse (or any NHS medical person) back and get them to make a referral to the local palliative team. It doesn't have to be a doctor who does the referral. Technically I, a physiotherapist, can make this referral. Palliative referrals get bumped up the chain really quickly. Paramedics can do it too if that's the last option you have. It's literally one phone call.
brilliantinemortal@reddit
We had this happen with my grandmother, who lived independently in her own home until 103. Mentally sound until the end, but physically deteriorated in the last year or two. Our situation was slightly different as all family lived at the other end of the country so couldn't drop in as you do - although my mum travelled to her every month to stay a week or so and do odd jobs/life admin for her, it wasn't sustainable. Actually not having someone from the family doing day-to-day care like you are made it easier to convince her to accept outside support - we were fortunately able to afford daily visits from a carer (two different ones in the last two years of her life, each once a day), which helped with peace of mind but also meant she got her wish of staying at home which she was ADAMANT about. It was the compromise that worked - accepting outsider carer visits meant that she could stay at home, they helped to fulfil her wishes. Any discussions of moving permanently into care ended up really unpleasant and ultimately we decided just to let her make the choice about how she wanted to live that we all had to respect. Getting her a personal alarm (for falls etc) also helped, along with setting up CCTV in her kitchen that we could see for further peace of mind - I'd suggest something like that perhaps? My grandmother was as you said - chair bound. Spent probably 8 hours a day happily in her arm chair listening to the radio watching out her front window, only moving around to the kitchen and bathroom.
It was only after a bad fall that she was hospitalised for that the doctor said she could not return home and she was discharged into care, where she deteriorated quickly and died within two months. It was quite sad, as she always wanted to stay at home, but the decision was made for her at a point when she was out of the house, so she wasn't actually being 'removed' so to say. Sometimes it might just take something like that happening, unfortunately, for someone with authority to make that decision for her.
It's really tough, because you are understandably worried about her. But ultimately, especially if she is still mentally sound, it is still her decision, and she understands the risk - this is how my family came to terms with it. Wish you all the best with it.
TheRoyalDuchess@reddit
Speak to her GP, insist on being referred to the elderly care team if you haven’t done already. Gp can also book and OT visit what level of support you mum needs. I appreciate every county is different but at 97 years old the gp has to step up.
chronowise@reddit
When you say your GP is a nightmare, do you mean getting mum there or something else as well? Palliative care is a big part of GP care.
If they're aware you think she is end of life, or approaching this, they should be able to do a home visit. They can help refer to a lot of the teams already mentioned e.g. district nurses, an urgent referral for equipment/hospital bed, and organise medication to keep mum comfortable if she's nearing the end that the nurses can administer if needed etc.
I see mum has a DNACPR, but does she have an EHCP (Emergency Health Care Plan)? An EHCP is something the GP can arrange if mum's preferred place of care (where she wants to be treated if she gets ill, and where she wants to be when she passes away) is home. This means she wouldn't go to hospital unless it's unavoidable I.e. specific situations such as fractures.
If you're really worried about mum when the GP is closed, you can call 111 and ask for an out of hours GP. They can also review mum at home and get the ball rolling on these things (they can't do an EHCP, but can ask your usual GP to).
Fadesintodust@reddit
Sue Ryder might be worth a call
jelly_crayon@reddit
After my grandmother died my grandfather stopped looking after himself (completely understandable I would do the same) his health rapidly declined too. He also refused care and had quite a few falls. He was eventually pushed into a care home and died maybe a month later in a place he did not know nor wanted to be.
Granted I have hindsight but if it were up to me I wouldn't have pushed him out of his home. He knew where he was heading, he was always very sober about his future. It would've been the poetry he wanted to have spent his final days in the same place his wife did, where he raised his children, his martial home.
As much as we want to hold onto people it is important to remember that everyone should be the agent of their own destiny.
TheHootOwlofDeath@reddit
Would she try respite in a care home for a few weeks? It may change her mind.
I have had a few relatives try respite for various reasons and then decide to stay at the care home long-term. Not all care homes are horrible, there are some genuinely good ones out there with staff who care.
TulipTatsyrup@reddit
I'm going through exactly the same thing Does Mum have a terminal illness?
Does Mum have a DNAR in place?
I'm happy for you to DM me if I can help in any way.
legalthrow75836@reddit (OP)
Thanks. I may well might. DNR is in place.
It isn’t terminal illness. Well, it could be, but no diagnosis. More like 15 things connected with old age. So 20 pills a day, hardly eating. You get the picture.
Witted-wolf@reddit
My grandmother is going through a similar situation- same age as your relative. GP is useless though , thanks for posting I've got some useful information 👍
Timely_Egg_6827@reddit
Make sure the paperwork for DNR is either in fridge or by meds as that is where teams will look.
anewaccountaday@reddit
Life is a terminal illness....
But honestly she needs to see someone to deprescribe some of these medicines which at this stage of life are not providing any benefit and discuss her wishes etc and document them in such a way that no one will try to do the impossible to her.
I know you say GP is a nightmare but maybe if you explain she wants to do some advanced care planning in a telephone consultation first, they may send someone to the house (either a doctor or community matron for palliative care)?
TulipTatsyrup@reddit
I would say that help the aged is an amazing resource
I don't want to say too much in a public forum but they have been invaluable to our family.
Also, however bad the GP is, you really must go and speak to them and push for help
There are community occupational therapists available to you who can facilitate any aids Mum might need to asked things easier.
Also, do you have a local hospice?
The hospice have supported us beyond belief.
We are looking after Mum 24/7 on a rota system. It's like a military operation at times
Atoz_Bumble@reddit
Like everyone has said, adult social care for a care and support assessment in the home. They can do a financial assessment and have an OT out for any aids and adaptations needed.
I assume it's already in place, but if not, apply for Attendance Allowance. It's not means tested.
PoodlesMcNoodles@reddit
A lot of care homes will offer daycare where the person goes to the home and can spend the day there maybe having a bath, having meals and joining in activities. If you were to start with maybe one visit then a day a week her comfort with the care home (and they are mainly fabulous by the way, don’t believe everything you hear) may grow and she might have the occasional overnight stay and maybe become a permanent resident. I have seen it quite often. Contact the care home and they can talk you through it and also help with how the funding might work. Good luck.
Fickle_Hope2574@reddit
Personal life no, professional yes.
Sadly when people reach that age it's doing whatever they want to make them happy. She's lived a wonderful life, literally survived a war that fractured the world, she doesn't want carers treating her like a job, she doesn't want to go to a nursing home to be fed terrible food and be miserable. Don't say she needs a carer say she needs a friend to give her a hand as she's struggling with being a old ganny (assuming she has a sense of humour). Nobody wants to admit they need help hence why I never introduced myself as a carer or nurse first, always a mate/friend.
I'll probably edit this to add stuff after I've finished watching black phone 2.
MB_1888@reddit
What does your mum want?
oPlayer2o@reddit
You, you call you. Go take care of your mother.
Sonewhereelse@reddit
Adult Social Servives can assess her and potentially offer help, but only with her consent.
Separately though you (or anyone caring for her) can ask for a carers assessment which could also be helpful. It's not an assessment of your caring abilities, but of what help you might want or need.
LongjumpingStep5813@reddit
Get district nurses out they can sort out things to help. Also speak to social worker about fast tracking care
Fun-Skin393@reddit
My mom was 95 and hospice took her own just for the fact that she was 95. She lived another year and a half but hospice was there for us the entire time.
srm79@reddit
Age Concern might be able to provide better guidance but, I'd contact adult social services, especially if you're getting nowhere with the GP.
I hope you find support, it's out there but, I know how hard it can be to access with the disjointed nature of care. I wish you and your Mum well
grey-skies171@reddit
Went through this with my partner's gran. We paid for carers to visit 3 times a day, make sure she was ok, help with any personal care she needed etc. She was 99 when she died, just shy of her 100th birthday, and stayed in her home until the very end. If her GP practice cant refer to get carers involved then contact adult social services yourself. Or you could try contacting care agencies directly and seeing whether they can help you dot the I's and cross the t's, they were able to with us which was a big help.
When it came to the end the carers were there. They performed CPR until I arrived and told them to stop. She went the way she wanted to, at home where she was happiest.
Some-Air1274@reddit
Can you not take her out?
ProperComposer7949@reddit
My mum had something called hospice at home come and help her towards the end they were very good
External-Praline-451@reddit
When my Mum was dying the Community Care Team were amazing. You should be able to self-refer. They have district nurses and occupational health teams that can do an assessment, provide aids and even a hospital bed.
You can fill out Respect forms for how she wants to be treated, which cover things like wanting to stay at home.
We have had a live-in carer for my Dad since my Mum passed away. They have been amazing, it's one-to-one personal care, so you know they're being looked after, rather than worrying about them being left for long periods in a home. They cook nutritious meals according to what your loved one wants and do laundry. They are also trained and experienced in care, so invaluable. It's also actually been slightly cheaper than a care home, which is just an added bonus.
I'm sorry this is happening, it's very hard. But there is some great support out there. Don't do it alone.
beeurd@reddit
Recently went through similar with my nana, you need to get adult social care and don't let them fob you off.
Also, as hard as it is you do need to be firm and get her to compromise on having carers visit. My nana didn't want carers either, but it came to the point where it was either have carers or stay in hospital and she definitely didn't want that! Luckily we eventually found a regular carer that she liked, which made things easier.
123Perriwinkle@reddit
Though she’s declined carers think your best bet might be Domiciliary care. They can come in between 1-4 times a day and for as short as 15-20 minutes each visit.
groovyfunkychannel27@reddit
Make sure you’ve involved the GP and you get referred to the palliative care team for the area, they are not just for the very end and the sooner they get to understand your moms situation the faster they can react when you need them. We went through this with my father in law and the hospital and his GP failed to invoke the palliative care team in time and it was very stressful. We got them involved in time to make him comfortable at the end.
pollypetunia@reddit
You could try calling the Marie Curie advice line on 0800 090 2309. They do end of life support (not just for cancer) and in the event that they don't think your mum fits their offer that they can also advise on other local options. Most of the support they offer is at-home visits designed to keep people in their homes if that's where they want to spend their final days. They also have a ton of advice on their website.
DeafeninglySilent@reddit
Paramedic here 👋🏽
Firstly, I'm very sorry to hear you and your family are going through this. Your mother sounds like an incredibly strong woman, and is certainly the type of individual I see frequently at work. Her determination to stay at home unaided despite her declining health is extremely common with those of her generation I assure you!
As others have said, social services are the way forward here in terms of providing additional levels of care; they can facilitate carer assessments, though only if your mother consents. This is a key thing to remember here; if she is dead set on not wanting any other people coming in, it is likely social services will not be able to help you. They may however be able to help with furniture changes such as nursing beds, through their occupational health team.
Your mother's GP will be the primary contact here, and should be able to facilitate a home visit with her current state. Any good GP will be able to see any sign that she may be approaching the end of her natural life, and be able to refer you on to palliative care teams within your locality. If that is successful, you will then be under their support, and they are absolutely fantastic, and often incredibly good and helping our elderly patients to understand what is happening and to encourage acceptance of further help. Sometimes it takes someone from outside the family to broaden mindsets, and I have done this no end of times.
I hope this is of some benefit, wishing you all the best.
CcatsCoffeeBooks@reddit
Adult social care via the council who will assess her living situation
Also, Age UK is great for cleaning/food shopping if you need support with those things whilst she is at home
Alone_Clothes2329@reddit
I have no advice but I just wanted to say i'm sorry to hear of your situation.
No_Ferret_5450@reddit
Adult social care
BobMonroeFanClub@reddit
Yup deffo ring adult social services.
Thatsthebadger@reddit
Your local council First Point of Contact team as a safeguarding issue would be the fastest way to get additional support.
I know you've said that she doesn't want additional help but would she accept it if it meant she didn't have to go in to residential care?
Sometimes, the only way you'll win though is to be blunt and tell her the toll it's taking on you as a family and that you're at breaking point. If she continues to refuse then she will be forced in to a nursing home because of something that happens, and she won't have a choice.
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