I'm in bits, I just don't know what to do

Mum had her actual diagnosis just before Christmas and although her nearest and dearest had witnessed a steady decline over a couple of years, she’d always denied - and still does - that there was a problem.

It has been worse than hard work trying to support her and persuade her to take any advantage of the support and help available from our local Memory Clinic. I’m exhausted to be honest. I’ve been with her every day morning and evening, trying help with this and that and today is the first day in years that I have not seen her.

Yesterday she had a major fall at home and broke both her shoulder and hip. She’s in the hospital now having had a total hip replacement and we haven’t been able to see her. I know she’s in a safe place which is good but I can only imagine the panic she’s in not seeing a familiar face.

I’m terrified of the future. She’ll need so much more care on return home and I just don’t know how that is to be managed. I can’t give up work, my home is my one sanctuary and I can’t lose it however selfish it seems. Looking after her has separated me from any friends so right now I don’t have a soul to support me. I have a sister who is a selfish bag of wind and only helps when asked, never offers and my Mum didn’t want her much involved anyway. She doesn’t trust her and we had a big disagreement over the POA. My sister demanded that she be included although Mum was adamantly opposed. I managed to negotiate a partial solution with my sister as a deputy and we agreed that we would all be on the medical POA which seemed to suit. I left her to sort that out and now it appears she didn’t do a damn thing with the excuse that she thought I had done it. She’ll happily leave everything to me and not once volunteer to do anything.

She’d gone down for surgery when we went today and that’s why we didn’t see her. I ran madam home tonight and her first words were that she was off down the pub for a nice meal - and several drinks I suspect.

Other than my sister and her shyster sons I don’t have any other family. My mum’s sister who is the one person I would have gone to for support passed away herself last year.

I can’t stop crying. Mum looked so frail when we left her last night.

Hi NIkki,
you must be exhausted and worried, on so many levels.

She will probably be on a morphine pump after her operation and wanting to sleep, so try not to worry too much. Try and get some sleep tonight yourself and then visit her tomorrow.

The hospital should have dementia champions so it’s worth asking about this when you next ring/visit. Some hospitals are a lot more flexible over visiting times for those with dementia - you might find info on the hospital website.

With a hip replacement and a broken shoulder - your Mum is going to have difficulty with her physio and learning to walk on her new hip - as after a hip replacement the physios give a patient a zimmer frame to walk with, then crutches/walking sticks. Your mum will be entitled to rehab - I would push for this to be residential rehab care. Use this time to look rest, recuperate and explore the options. Look at care/nursing homes - explore what is available (ensuring they have a dementia unit,) so you have done your homework if this is needed.

There is info here on hospital discharge Coming out of hospital | Carers UK


Thank you for your reply.

I saw her twice today once with my sister and once on my own. When I saw her the first time with my sister it was a terrible shock. She seemed to have deteriorated dramatically from the woman who was talking coherently, if a bit vaguely, to the nurses. We told ourselves that it was more to do with the pain meds. I dropped the sister off at home and came back for some tea myself but for some reason I had a really bad feeling and I decided to go back. She was a different woman, again still vague, but she recognised me which I couldn’t have said for certain at our earlier visit and we actually had a conversation about what’s to happen eventually. I did wonder if it was possible that she’d gone on ‘shut down’ because my sister was there. She really does not like my sister much at all bit the sister does not really grasp this.

My sister keeps trying to force her wretched children on me - ‘so and so would LOVE to see his nan’ forgetting that so and so hasn’t bothered with his nan for years. I don’t want to keep her from seeing her grandchildren but I’m going to be outnumbered and my sister’s family are worse than hard work. One visit every three months when she sits on her bum and doesn’t even make Mum a cuppa doesn’t make her a carer or even support.

It is hard enough seeing my poor Mother drawn so low but feeling as if I’m parrying my sister at every turn is exhausting.

Plus I feel like I’m turning into a miserable, whingy cow. We have to deal with it whatever comes but it’s going to be so messy.

I’ll certainly bear in mind the information you’ve given me. I’ll see if our hospital has dementia champions.

My wife’s dementia was much worse after having a general anesthetic too.
Maybe doctors should give epidural injections instead?

I seem to remember my Nan having the same difficulty after she had a general for cataract surgery. It does make you wonder.

My husband couldn’t have a bowel procedure. The consultant couldn’t take the risk. He would have had to remain completely still otherwise a bowel perforation was likely. Poor hubby he would have become agitated and possibly aggressive, not understanding in his dementia world. He may have agreed, then forgot.
Its so heartbreaking, what we all go through, watching loved ones decline with dementia, and other terminal illnesses.

I’ve had 8 operations, 8 general anaesthetics. The first operation was awful, I was sick and mentally alert, but just couldn’t speak, it was too much effort. My husband often reminded me later that I just told him to go home! He’d been working all day and I could see he was tired, it wasn’t that I didn’t want him there!! I was also physically sick afterwards.
Next op was so different. I told the anaesthetist what happened the previous time, he gave me something different, worked wonders, I was chatting to the nurses quite normally in the Recovery Room, no sickness. After that op, I always asked for the same “recipe”.
I’m a great fan of morphine pumps for the first few hours after surgery, great for relaxing and taking the pain away, but it does make me a bit mentally strange.
There’s a lot of stress involved in surgery, and a lot of healing has to happen afterwards. Don’t worry too much about mum these next few days, just let her body recover in peace, with food and rest. I always reckon it takes at least a month for all the anesthetic and effects of an op to wear off. This is the bit the NHS just don’t get. You may be over the op as far as they are concerned, but that doesn’t mean you just go back to how you were immediately!
Anaesthetics may affect people with dementia differently, but don’t draw any firm conclusions yet.

Many thanks all of you for your kind support.

Speaking to the hospital this morning they sounded surprised to tell me that Mum was sitting up and chatting well. We did try to tell them yesterday that the sad creature in the bed was not anything like the person we had on Friday but of course, they knew best.

Can I suggest that each time you visit mum you record a short video of her?

Hi Nikki,

That’s great news that she is sitting up and more coherent again. :smiley: There probably wont be any physios about today, but make sure you find out their plans for getting her mobile again - the longer she stays in bed the harder it will be for her to get back on her feet.

I have had similiar with my caree, taken him to the doctor poorly and they have needed a lot of persuasion that how is presenting isn’t typical of how he usually is.

BB’s idea is a good one. I had to show a consultant video clips of S doing an activity seizure free and a video clip of him trying to cook whilst being interrupted by absences and complex partial seizures for them to appreciate it wasn’t part of his autism and acknowledge his usual level of functioning.


Taking a video might be an idea.

Last night she was overtired I think, and very confused although she was talking away happy as Larry The physio has been already and she’s been up on her feet. She is improving - on Sunday it took three bits of equipment, two nurses and 20 minutes of coaxing to get her to stand so they could put her in bed. Yesterday it only needed one bit of kit, one nurse and 3 mins to do the same. She seemed steadier.

That’s real progress. It’s so important to get up and moving after hip surgery, at any age. It reduces risks of other complications.
A broken shoulder as well is a huge complication. Normally crutches or a Zimmer frame would be used to aid walking but presumably because of her shoulder, this is not an option.

That’s what they told me. So much more difficult when she’s only got one arm to support herself. She gets tired very quickly and then starts rambling a bit. It’s too sad to witness especially considering just a few days ago she had a few difficulties but was more than capable of doing for herself.

I hate this horrible condition. It robs us all.

I think what I find so distressing is that last Friday morning, I dropped of my cat - Mum always looked after him - and she was spry and bright. I would NEVER have left her otherwise.

Mum sometimes would call a duck a spade, sometimes put things in the wrong cupboard and forget where it was. She couldn’t always remember characters on a soap she’d watched for decades but she followed the plot pretty well and enjoyed watching and reading.

How can that all be gone in less than a week? It’s hearbreaking. We were upset when she got her diagnosis but the doctor reassured us that it was likely to be a slow moving condition as she is 82. She’s been doing so well but the plummet this week is devastating. She was busy and active just a few days ago - 6 days in their custody and she’s disappearing in front of our eyes.

she has had a traumatic and painful fall and been through major surgery, she is in an unfamiliar place, with new people and she still has a lot of meds in her system. She sounds sprightly when she isn’t tired, but understandably her confusion is worse when she is tired. She is making gains physically - no mean feat. I have had two hip replacements, one aged 30 and one in my mid 40’s. The first two weeks after surgery are the worst, then it starts to get easier. I don’t think you will know how she really is until more time has passed. This op was much bigger than the cataract operation she had.
The nature of dementia does of course mean she will decline, but that doesn’t mean she won’t improve after she recovers from the op.

Have a look at https://www.alzheimers.org.uk/ it offers information and advice for all types of dementia.


I’m really grateful for everyone’s advice and help. I am trying to keep optimistic although it’s hard to watch her decline so rapidly.

We’ll keep our fingers crossed that she improves as time goes on.

Nikki, try to think of it like a delayed shock to the system.

This sort of operation wasn’t common even 30 years ago, and it certainly wasn’t offered to very elderly patients.

I know it might be difficult for you, but if you read about what actually happens in hip or knee surgery, it’s really very drastic.

Not only to the bones but to all the supporting muscles, ligaments etc. It’s tough when you are relatively young and fit, but a million times tougher nearer the end of a life, when nothing is working as well as it used to.

When Nan was chatty before, and now she isn’t, and you are really worried about that, maybe she was still a bit “high” on the drugs she had been given to manage the pain, and now she isn’t. The feeling of tiredness, just wanting to sleep, sleep and sleep some more always takes me a long time to get over.

Try to be patient, to be glad that the surgery was offered to nan, that she didn’t have complications that meant surgery wasn’t an option, to be glad that she came through the surgery unscathed. Being patient is definitely not one of my virtues, but really only time will tell how nan is going to be in the future. The NHS has done everything it possibly could to give her the best chance.


I could have written your post about 5 or 6 years ago. In my own experience, and yours may be different, anaesthetic did cause the dementia to worsen. In any case it is a degenerative awful disease. In my mum’s case it was dementia plus a broken leg.

You will not know for sure the outcome for some weeks yet. Mum is in an unfamilar place surrounded by strangers. And is she drinking enough? Any UTI or urinary infection will also mimic dementia. While she is in hospital, it is a bit of a waiting game. And you of course are exhausted, anxious, at the end of your tether.

One thing I did do, and I would recommend, is take this opportunity to visit nursing homes. Mum is safe in hospital, in good hands. You may never need a home for mum but if you do, sometimes you need one reasonably quickly. To get an idea what is available in your area IF you ever need it may help you too to feel a little bit in control. I would also recommend keeping your own home, and job, identity as much as possible. I know this is much easier said than done.

Before mum is discharged, please insist that there is a care plan in place to assist at home.

A dreadful time for you but you will get through this, and we are all here for you virtually,

Take care,

Hi Nikki

There were many points in your posts that resonated with me and even though I’m a brand new member today, I want to say " I’ll walk beside you."

The most striking point that you made, that stood out to me, was how rapidly your Mum “deteriorated” from how you knew her to be .

This is exactly the most shocking thing that we’ve seen and are handling with my Mother-in-Law. My Mother-In-Law is 88, so she is reasonably similar in age to your Mum. (Only diagnosed in July this year.)

So, although none of us can change what is happening to them with this awful disease process, nor can we change the relationships we’ve had with family in the past,( I also truly understand that same pressure you’re under!!), it is testament to YOU as her Daughter and a very decent caring human being, that it is YOU who knew that you had to reach out to find support for you and your Mum. That is such a beautiful and rare quality and please try to start to believe that this makes you a very special empathic person. And the world needs more people like us.

I’m taking one day, and even one moment at a time right now. And having found this forum, I know I’m not alone and neither are you.

Take Care, all the best.

I did speak to the Patient Advice and Liaison team and the ward sister responded. They have put a sign over Mum’s bed that she will need packets of food etc to be opened which is great although it seems like common sense to me when you have a frail patient with only one fully functioning hand. It is progress though. They are putting her on the commode so although she’s still having to wear pads at least that is also progress. They are still talking to her as if she’s 6 rather than has dementia which is annoying but Rome wasn’t built in a day.

The Ghost Sister keeps wafting in and out doing as little as she can get away with - I feel a massive row brewing there unfortunately.

I was a bit worried about an event that happened yesterday to a patient nearby my mum. In the usual fashion of hospitals a registrar came to see this lady and, in the usual fashion of young doctors, decided that as she was elderly she was probably completely deaf and decided to bellow her business so we could all hear. The upshot was that they were sending her home that day. Poor soul she was completely panicked. She hadn’t any nearby relatives and the couple of people with her at that time were from Nottingham, miles away. She hadn’t any street clothes, there would not be a bite of food in the house and then the reg announced that the carer would not be coming until the following day and only once daily, not 3 times as she had been promised. So clearly the plan was to simply dump the poor woman at home without the slightest idea how she was to manage.

The consultant was summoned and they insisted that she was going home come what may. When I returned that evening she was heading out.

They should not be able to do that. How on earth do they imagine that an elderly patient with no immediate family support and a massive neck brace was going to manage to fend for herself when she could barely walk??? Actually Mum reminded me that they did the same thing some years ago to an elderly neighbour of hers who was brought home from the hospital by ambulance without any sort of warning or preparation and simply dumped in her living room. They didn’t even help her take her coat off. If Mum hadn’t happened to go in on spec to make sure the house was all right she might not have been found at all.

I’d hoped that this was a one off but clearly things have not improved one iota.