Hi, I am a 58 yr old daughter who is at the point of no return, My mother is now 94 yrs old, has become frail and is in early dementia stages. (some might say well into it but there is no definitive diagnosis as she has refused any assessment}.I care for her on my own, single child and no extended family.
She has become very frail and unsteady on her feet, she fell earlier this year and broke her arm…only to take the cast off herself after 1 week…She has had numerous falls recently , both outside and in the house. She has refused admission to hospital every time. Fiercely Independent!
I am now at the stage of realising she need 24hr care, I visit at least 2 to 4 times a day. but I cannot be with her 24hrs a day. Since I retired in March things have become much worse, she will not acccept help from her long standing carers. they pop in 10 mins 7am and 2pm to make sure she is safe and has taken her meds.however she more than happy for me to do washing, cooking, cleaning etc.
I am at breaking point but she refuses any help or to use OT adaptations I’ve put in place to make her life easier.
I cared for my dad wiith full blown dementia for 7 yrs. I can;t go thru it again. Why do I feel so guilty about asking mum to go into care? it’s because she hangs off my neck in tears saying things like “I’d be dead without you, You are my one and only, You’re my hero”
Please help me to do the right thing and stop feeling so guilty about the decision I have tp make.
Hi Christine
Things sounds really difficult right now. In terms of residential care, have you thought about the very likely scenario that your mum will say no? Have you already found somewhere you feel would meet your mum’s needs? Would staying in her own home be possible with increased professional care? If her current care self-funded? It sounds like she has refused any assessment at all, including from SS?
The difficult thing is that although you feel your mum won’t accept help from her paid carers and she is happy for you to do everything for her, it is your actions that enable her to behave like this. You are going to have to withdraw the support you can’t give any more and be clear with your mum what you are prepared to do from now on. You can help mum with getting in the support she will need, but you can only change your input. What your mum does in light of that change is her own decision.
Do you have financial / health & welfare PoA for your mum?
Don’t feel guilty!
Jane
Hi Christine,
Your Mum sounds as wily as my Mum was, who was also not above dishing out a bit of emotional blackmail. Don’t think my Mum was quite as blatant about it as yours however.
I was your age when I took on my Mum’s care. 10 years later, when Mum died aged almost 100, I found myself almost 70, (which I am now) and too old and tired to do all the things I had been planning for my retirement.
I have the excuse that I didn’t comprehend (nor do many carers taking on elderly parents), just what I was letting myself in for or how long it would be.
You already know what it’s like and recognise that you are reaching the end of the road. I’m afraid you will have to metamorphose from ‘heroic slave’ into ‘big bad wolf care manager’.
It seems that the very elderly are incredibly stubborn, selfish and self centred. Not on purpose. They just can’t see that their ‘child’ is getting older and may be suffering as a result of catering to their needs. In their eyes the ‘child’ is young, fit and has many years yet so why shouldn’t they help out?
It’s sad that your Mum has reached the stage of needing so much care, but she has got there by virtue of living a very long life. She won’t understand that she has no excuse to steal your years and possibly your health by refusing other help and care, but that is the case and not for you to feel guilty about.
Carers popping in for 10 minutes twice a day doesn’t sound right. Are they from an agency? Has Mum had her needs assessment updated lately and have you had a recent Carer’s assessment?
When they used to talk about ‘second childhood’ in relation to the very elderly it is still appropriate in that, like a toddler, they demand what they want, disregarding what they need. It falls to you to take over an almost parental role in your relationship and be firm with Mum. You aren’t her little girl any longer. You are the one who has to say what IS going to happen. There will be tears and tantrums!
I worked on my Mum by saying the carers were there to help me. I couldn’t manage if she didn’t have help for a certain amount of time every day. My Mum was smart enough to accept any and every aid in whatever form it took. Kept her ‘at home’ for a lot longer than if she had refused. Perhaps your Mum can be brought to realise that it’s a choice between lots of care and you or no care and no you. If she will accept that then it will ease things a bit while you search for the best Home in the vicinity.
If your Mum is beyond understanding the crisis which is looming, then you will have to go all out to find her a place in a Home because it’s what she NEEDS! Why feel guilty when you are acting in Mum’s best interests?
Leaving her vulnerable to falls or destroying your own well being are not options.
Brace yourself and ride out the storm.
KR
Hi Christine,
I absolutely agree with Jane and KR. Please put yourself first - do what you think is best for you. It sounds like you’ve been caring for years. It is wrong that your mum expects so much from you.
Christine! You have nothing to feel guilty about and even though we will all tell you this I know you still will!!! That’s because from my own experience the guilt never goes away! I’m 72 (nearly 73 and an only child) and my mum 93 in November. My mum sounds just like yours…thinking that I should look after her/not understanding how hard it is for me . Saying things like “it’s your duty to look after me”./ “If you don’t look after me I’ll make a will and you won’t get anything”!!! Oh and also “I don’t want strangers looking after me”!!
Eventually mum started hallucinating and was admitted to hospital last December . At this point I knew I couldnt go on any longer and she was admitted to a nursing home. But the guilt is still there Christine, especially when she begs me to take her home!
BUT… I stood firm like you will have to do and just keep telling yourself that YOU deserve a life too. Like others say your mother now NEEDS others to care for her even though is not what she WANTS!!!
Stay strong Christine. We are all here to support you.
Let us know how things work out…
Big hug. Xx
Christine… ignore the PhpBB3… mistyped!!!
Thank you all for you messages, it really helps me to deal with the guilt (my major problem). This morning I went to mum’s with lunch, we ate together, I offered to do her shopping but she said she didn’t need anything. We had lunch then she said she was going to have a sleep. She had 4 plates out and kept asking when the ‘others’ were coming back from holiday.
I got a call at 3.30 from some lovely ladies in our town bakery to tell me that they had mum at the shop with heavy shopping bags.
I went there immediately, she’s told them she hadn’t seen me that day. This has clarified my mind. I feel awful and I know it will be hell but I realise she must have 24hr care,
After reading your replies I know that I am not the only person going through this. Thank you. I now realise this awful experience is shared by many and I am grateful for your advice. I hope I can keep my nerve, forget the guilt, make her safe and comfortable and begin to live a life of my own, once more.
Hello, I’d just like to add some observations from reading this site. I can see many people suffering and crumbling under the weight of their caring duties. I work as a nurse and it shocks me that so many people are disappointed at the amount of forward planning and care for their elderly relatives, on discharge from hospital. There seems to me a complete disconnect between health and social care, I experienced this first hand with my father but had hoped the experience would not be repeated,
I spoke with a ‘new’ social worker today that my mum had been referred to (in 2.5 weeks).
She had had a poor handover, had no idea of my concerns etc. She is coming on Friday to have a chat with me about my concerns about mum’s safety but also told me that perhaps leaving mum at home might be the kinder option for her. Not to distress her and make her feel unhappy, going into care.
Mum has had at least 5 falls in one week, hit the bedside cabinet an spent the night on the bedroom floor with a black eye. Was discharged from hospital after physio assessment that she mobilise with one (she lives on her own.) She fell off her stair lift 4 days after being discharged.
This could all be so easily preventable but I feel I have really struggled with this decision to have mum in 24hr care, as previously mentioned but as long as i’m available to provide all the support they are happy to let me continue. Feeling disheartened.
Hi Christine,
OH good, you are forewarned. You now know that this woman’s sole ambition may well be to get you to agree to looking after Mum full time, with absolutely no consideration for the well being of either of you. It would be absolutely not fair on either of you. How on earth are you supposed to be responsible for Mum 24 hours a day and how is it fair on Mum to have someone exhausted and stressed there to pick her up next time she falls and cope with any breaks or head injuries while waiting for an ambulance?
Utter nonsense.
I suspect that your heartstrings will be pulled, (you don’t want to give your mum so much stress at her age), your ‘guilt’ will be used, (you are a loving daughter, won’t you give her your time now she is nearing the end of her life), you will be offered so much more ‘wonderful help’, (how about an extra carer’s call and perhaps an hour for you once a week) and your civic duty button pressed (we are so short of resources and money, we do appreciate family carers, especially a nurse like you, who knows what to do).
Big test of your resolve coming up I suspect. Of course they want you to provide all care. Be realistic here. It’s NOT right that Mum should be alone and vulnerable to falls and lying all night with an injury. Equally important it is NOT right, fair or feasible that you should be a whole team of people all on your own. Give up your job perhaps?
Christine, you have got to say ‘NO’.
I know your Mum is very old. I know it might not be long before the next fall or illness or sheer old age brings the end. I thought that about my Mum. My Mum lived for years after that thought, to be a few days short of her 100th birthday at the end. In the meantime I had lived 10 years and aged 20.
Do not let either a friendly/ sympathetic or a judgemental/ pressure approach get to you. Chat or assessment I wonder? If the latter you need a copy of her ‘findings’ which may differ. Take notes, stick to your guns, use your own background and knowledge to your advantage, be proactive, not reactive (especially not to any false sympathy) you are fighting for Mum’s safety and your life!!
Please let us know how it goes.
KR
Thank you Elaine, for your advice and concern on my my behalf. I have already responded to you in a long email, however my dodgy internet dropped out and I think the email disappeared, so I apologise if you received it and I am repeating myself.
I agree that there may well be a huge amount of pressure from the SW, however I have been caring for my parents for the past 13 yrs. I have made a difficult decision to put mum into care and I simply can’t accept any more,pressure to care, to the detriment of my own health, both physical and mental.
The first SW I met with was fully supportive, however Mum’s case has been passed to another, not sure why. I have decided that Social Services must be made aware that I won’t respond to emergency phone calls at all hours of the day and night, expecting me to pick up the slack and wait for ambulances (last time from call to ambulance, arriving to take her to hospital was 9am till 7pm.)
Mum genuinely feels sorry that she has become a “burden to me”, she wants me to get on with my life, however the stumbling point is she says she can manage on her own!
Keep fingers crossed for me, I intend to stand strong, my mantra to mum is “I love you and I know this is not want you ‘want’ but it is what you ‘need’”
OMG what a mess!
Yes, it IS a mess. I could write a book on the subject, from both sides of the fence, over the last 40 years.
It cannot always be about what the caree needs. Caring should be a balance between caree and carer. Hospitals are designed to make people “better” but are ill equipped to deal with end of life failing health that can never get better, it’s just a part of life.
Social Services maximum care in my area is 3 hours a day. That leaves 21 hours unsupported. This simple bit of mathematics is apparently a struggle for SSD!
Your needs are equally important. Only after I was widowed at 54, when my 58 year old husband had a massive heart attack, I realised that we had put off so many things that we wanted to do, in order to support elderly frail but fiercely independent parents, all living nearby. So many dreams, his and mine, unfulfilled.
Don’t feel bad. Do you see a therapist or not?
Thank you all. I have provided her with a timeline of why and what my concerns are. Every incident and fall Hope she can take it all seriously…
Don’t be too disappointed if despite all your efforts, she just doesn’t understand.
It is a fact that the very elderly, i.e. over 85, just lose the ability to see what others are going through to help them, they become totally “self focussed”. I saw this with my own mum.
You might find the “stuck record player” approach works better. Where you repeat the same phrase over and over again, something like “You need someone available to help you right through the day and night now”. What you need or feel may be very low on her priority list.
That’s clearly looking at what SHE needs, which goes along with the self focussed idea.
Many thanks to all who have contributed to this thread, it really helped me to refine my ideas and wishes for mum. Just to let you know I have met with the SW this morning who was very sympathetic to my situation and took all I said on board. I provided her with a written timeline, giving dates, incidents and my any actions taken or even, not taken! She said that this was especially helpful and will go into mum’s records so others can get more insight into the situation.
The meeting was very productive and I felt listened to. I am to be provided with a list of vacancies of accommodation for mum to view and see which she likes best. The next hurdle is actually get mum on board but I am determined! Hopefully she’ll find somewhere she can live and I start my ‘new’ life…Again many thanks for all your support.
Brilliant news! You must be relieved and happy at the same time.
Hello all of you,who have made feel sane again. I just wanted to say since my last post, mum had a serious fall and had a massive head injuy. I received a call at 2.45 am to let me know. I went to her house and the care warden left me with her until the ambulance arrived. {1 and 1/2 hours) then went to A and E in the local hospital, where i stood with her for 4 hrs, whilst the staff squabbled over the Christmas and New Year rota. I left at 6am because I had to go to work. No one had Triaged her or even spoke to her.I was ashamed to be part of NHS nursing at this point. I went to do a 10 hr nursing shift straight from there…
I had a call about 11.00 am to let me know that she had been seen by a Medical Dr, who thought she was fit for discharge, she was to be sent home on her own. Luckily the Sister on A & E felt that she was not safe and arranged a bed in a community hospital.
The community hospital felt she was not an appropriate admission and asked if i was coming to visit so that I could sit with her to prevent her from leaving… I told them I would visit ever day but I would not ‘special’ her.
Yesterday mum went to a care home for 3 week respite, she has a DoLs safeguarding in place, I bawled my eyes out when I got home.
There is something that bothers me about this situation, why are A & E staff seem to be so hostile and none comforting to the elderly and I was ashamed to be a nurse today’s NHS…
What is wrong with these doctors, a massive head injury and your mother is fit to go home on her own.
Of course she isn’t safe to go home on her own, what about concussion, dizziness, risk of falls.
And your poor mother in A&E for hours and hours, the time limit for A&E is 4 hours, discharged or admitted otherwise there are fines.
When my carees went to A&E, they were there for 10 hours or more just shoved in a cubicle, no food, no drink or anything.
Boris Johnson should sort out the NHS as well as social care.
Hi Sorry to hear of your experience at A&E in the last five weeks I have had my 92 year old mother admitted twice first time she fell down the stairs luckily just badly bruised I couldn’t fault the staff she went straight into resus then onto a bay and onto a ward afterwards for a few days then sent home, unfortunately when the district nurse visited she had developed a chest infection was running a temperature and had low blood pressure so was re admitted when I got there a couple of hours later she was out of resus on a bay being given anti biotics went to get something to eat and by the time I got back was on the same ward as before, all the staff were attentive. she is now in a private care home for a four week respite stay where she gets 24/7 care it’s more like a hotel than an institution entertainment every day.
A week ago I had just come home from my daughters and started hyperventilating something that has never happened to me I went very clammy and was sweating profusely luckily I had my phone in my pocket and called 999 the ambulance was parked at the local filling station along with a police car they both attended within minutes, the police had to break down the door as I couldn’t move they couldn’t get the patches for the monitor to stick onto me they noticed I was coughing up blood and I was rushed to A&E straight into resus where I was stabilised the staff were brilliant and the doctor was very attentive to my concerns about the blood which wasn’t anything seriou,s though being the optimist I am thought the worst, he even came to see me when he was going off shift to see how I was doing it turned out I had a bad chest infection and pleurisy on my right lung the only gripe I had was not being able to sleep in the ward as they had no beds available was discharged later that day still not right but getting there.
When I was visiting my mum, a nurse told me that the management want to free up beds and they hassle the medical staff to discharge patients that are not really ready knowing they will be back within days a vicious circle lack of funding is to blame so there are two sides to the care the NHS provide and probably which NHS trust you are under, I certainly would have complained about the treatment your mum received.
I am so sorry to hear about all of your hospital experiences. Having worked as a nurse for a long time I can’t help but wonder what has happened to our wonderful NHS. After a fall a few weeks ago, I was told by a young paramedic that mum should really have a CT head but at her age (94) he was not prepared to take mum to hospital, where they wouldn’t do this, and at her age all that would happen was she would go into a ward, catch an infection and die from it.
Quite an amazing statement|
My initial feeling of guilt of asking my mum to go into a care home is still relevant I now realise the battle is more about how we care for our precious elderly parents. Mum is now safe and comfortable in a nice home, She’s not happy but she’s safe and that is a huge relief to me|
Mum has gone to a ‘time to think bed’ and she still wants to go home but fingers crossed she’ll agree to stay