Can anyone tell me what to expect?

Not in particular walking although she did surprise us with that in addition to being more lucid one day to the next. My mom had Alzheimer's and the last 3 stages really went about 3x as fast as the previous ones. She had the disease starting around 2009 and she passed away on Apr 12 and died here at her home.I remember how shocked I was to note that she was now just shuffling along like real old ladies do. It seemed to me the day before she could at least pick her legs up a little, not just scratch scratch along. There would be days when she'd be really out of it, sleeping a lot and almost incoherent... we thought "This is itl She probably won't make it through the night." Then the next day she would be chipper and smiling and able to carry on a conversation. I remember one night when she was at the point of almost having to be carried into the bathroom; she was quite helpless. We had alarms on all the doors, my caregiver was asleep and I was working in the backyard doing something with one of the ponds. Later that night, I decided to go get some gas, got my keys, walked the length of the pool, opened the door and got in my SUV. Went to 7-11 for a snack, got back in my car, drove to the gas station, got gas and when I was cleaning my windshield I happened to see these 2 naked legs with pink socks and big slippers, and there was someone in my backseat asleep in her underwear and a sweatshirt and those slippers. I thought someone had made a mistake and gotten in my car thinking it was theirs. I looked closer - and it was my mother!. She somehow managed to get by my caregiver's room, get by me working in the back yard, open the back door, open the fence gate around the pool, walk the length of it, open the garage door and climb up to the backseat of my SUV. It was as if she flew into the garage from the house. Next day she couldn't walk hardly at all. So you never know what they're capable of from one minute to the next. I've heard it's to be expected, this backing and forting where you think or would like to think they are getting a little better but slip back usually the next day.

Im in the UK hun they can be so so difficult to deal with and because I am not the quiet sort I guess I have made it more difficult for myself to be fair

Jude, please do not stay quiet about medicare/medicaid taking away the house. Raise your voice to media.... to TWITTER, to the news, medical treatment is basic in a developed rich country. Does Medicaid have the right to take away houses of the sick and needy??

Oh and on the plus side the hospital say they are happy for me to look after because they can see from her skin etc that I am doing a jolly good job - so I think I might just tell the social worker to shove that in her pipe and smoke it

Well we had a phone call today to say that Mum was very very poorly and may not last through the weekend. When we went in she was indeed very poorly then in a matter of 5 minutes - literally - she rallied and was back to yesterdays form of being happy and not wanting to stay in bed. It was hysterical when she relayed the previous night. now please dont take this as any sort of prejudice for Mum bless her just does not have the words to express herself in pc terms - she can remember the terms from her youth but not todays protocols.
She told us that a very nice 'darkie' (her words not mine Patrick is of African decent- and he was lovely ) looked after her last night BUT that he kept pushing her back into bed. I think he wanted sex with me she said and I told him I did that I wasnt that sort of girl but he kept pulling at my nightie until I just did what I do with Dad and let him get on with it. Well first thought after too much information Mum!, was what had actually gone on. So I questioned the nurses who said Mum had been very difficult during the night she had wet and soiled herself and when patrick tried to change her she kept shouting at him to get off her. Bless her. Today she is convinced she is in a place where 'you have to be nice you know or they come and wrap you in ablanket and put you in the oven - I told em I wasnt going to eat pie - didnt know what was in it.' Very very odd but at least she has rallied from last night.

Today's moptto DO CHECK BEFORE JUMPING OFF THE DIVING BOARD THAT THERE IS WATER IN THE POOL

Jude: So sorry that you are having to go through all of this. I'm not familiar with how things go over there, but sounds like you could use a lot of hugs and prayers. It may not seem like it right now, but the rough road gets smoother eventually. Remember to take care of yourself so that you can do all you need to do that's ahead of you. God bless you and you Mum.

Expect the un-expected. Epilepsy can be controlled with medications, and she will have to regain her strength and brain power to walk, but even that is not a certainty. Give her time to recover, and love her in her recovery.

Jude - I am in the UK too and we have very simialr issues to you. Our relative has been in hospital and is now home. She has no mobility and has dementia and no capacity but yet social services insist she has. If you have had reports from the PSYCH and support from the GP push for NHS Continuing health care. Also look at information on caretobedifferent. they are also on facebook. We don't have Continuing NHS Healthcare as it is a maze of a journey but those who have fought it have been awarded it. Our relative is at the stage of end of life and Social Services don't even recognise POA either. It is a battle and can say I have been subjected to hospital admission myself due to the stress and strain of it to which it has impacted on my health and welfare - now my husband is now getting checked up due to the pressures we are both under. I am ready to snap big time and will take legal action if need be and it will be very soon.

Oo, I'm with you on the number of different people coming to the house, Jude. Nightmare. I can't keep up with them all - how on earth do they think a 90 year old with dementia is going to? But we are incredibly lucky in our county with the quality of carers - they don't have enough time, and they're treated abysmally, and some are more capable than others; but they are nice, kind people and I haven't yet encountered one I won't have in the house (I've met a few in other settings, mind you).

Make friends with your community rehab team - they can work miracles. If your mother can't stand or transfer there should be a hoist in the house for the carers to use - the rules are that they must always be operated by two people, by the way; and officially we never break that. Your community team should have physios and/or OTs who will train you; but you have to learn to say "Brownie's honour I will never use this on my own" with a straight face.

They can't force the sale of the house, no; but they can put a charge on it so that when the house is sold the Local Authority will recoup care costs up to a certain limit. Have you had a visit from the LA's financial advisor? - if not, ask for one; they're obliged to send one out.

Have you got in touch with your area's CarersUK branch? Lots of people find them a godsend. I'm not quite that keen, finding it irritating when I get that much sympathy oozed over me, but they are a very good source for local contacts and advice. Plus they'll give you an in case of emergency card and log your mother's details so that if you get hit by a bus someone will go to the house, that kind of thing.

It's been a while since anyone tried to go over my head like that social worker and OT ganging up on you but I well remember the red mist. If I were you I'd contact the hospital's PALS and complain about their interviewing your mother unaccompanied - she may have capacity, but all the same she's under a neurological consultant and it's unreasonable to rely on her answers.

Oh I remember what it was! - a Heart Failure clinic nurse three years back who almost got my mother's pacemaker implant cancelled because mother told her she was "fine." I have calmed down now but I'm not sure the nurse will have stopped shaking. You can't turn your back for a microsecond...

Oh country mouse sounds like you have been through the same things in the past. MY social worker is fine - she KNOWS not to cross me - its the HOSPITAL social worker who is the persona from h*ll. We have had care support before and because of the timing and the vast number of them there are two serious issue. Times in the morning are between 7.30 and11.30 and bed is between 7.00 and10.00 at night. More than once we had a bedtime at 7.15 and not getting her back up until 11.15 the following day. now apart from potential pressure sores she was wittering for hours about when were they coming etc. All in all it became a torrid nightmare of mum complaining and moaning and wittering so much thatin the end I would have gotten her up washed her given her breakfast and had morning coffee befoire they arrived for their 1 hour visit and as for sundays....well if i had relied on them she would never have got to church which is really important to her.

The second issue is that because of the number of carer's none of them would be able to tell whether her 'wellness' was actual or deteriorating for to understand not wellness you have to know what she looked like well as it were. So carers dont work for us and never will in the way they are at this point in time.

The social worker told the assessment team there was no change in mum - she lied to them and then she lied to me when she said she never said it ...I was stood right nexts to her ffs. Prior to the episodes she could just about manage the stairs with me assisting after them she could not stand let alone walk. Prior to the episodes she could hold a cup afterwards she spilt everything down her, she could feed herself before but not after so where in gods name the notion came that there was no change I have no idea.

Then to cap it all she and the OT went to see mum together and came back saying she had capacity to make decisions and she was happy to come home with a full package of care. Railroaded..... grrrrrr dont start me off again - I want their heads on poles I am so angry about the way they behaved. Then to tell me I am not acting in her best interest when I ask for training so I can maange her (with equipment) is just beyond belief and then to say oh and you will have to sell up ...well i am over 60 and apparently they cannot make me sell Mums house and make myself homeless....so bring it on

Jude, where in the UK are you? (I hope it's not Wales).

Before your mother was discharged there should have been an OT assessment of her home. No? Then the people to raise Cain with are a) her GP b) Adult Social Services and c) District Nursing Services. There might still also be a Home From Hospital team based at the hospital co-ordinating discharge, or that might have been done by the ward; but the point is that if she can't stand or transfer she shouldn't have been sent home without either a full package of care or a hoist, or both.

Not being mean, but I chuckled at the three carers a day package. My mother was discharged with a Full Care Package of 2 x carers for 1 hour, four times a day. Hysterical. The CQC can stamp and shout as much as it likes about statutory duties but that still doesn't create 8 hours' worth of carer per day where none existed previously; our poor social worker was getting flak from everybody, including me when there was talk of discharging mother temporarily to a nursing home 30 miles away that I didn't know from the Black Hole of Calcutta; but I did a lot of fast talking (with fingers crossed behind my back) and she came home with one carer, once a day. That made for a pretty frolicsome fortnight or so, I can tell you, until we got things a bit more sorted; but awful things happen to little old ladies who turn up at short notice in nursing homes so it was worth avoiding that.

If the neurologists have been tinkering with your mother's meds there's no way on earth for a layman to sort out what's going on, but it sounds as if she's hallucinating and/or delusional. While that might be more fun than the depression, it also means sinister things could be going on physically. Follow instructions to the letter, but meanwhile record *everything* and report everything. By all means ask lots of questions, but I'd be wary of adding in medical opinions because it just makes them uptight and doesn't improve their diagnostic skills. I would never go against medical instructions but that doesn't mean you can't say "ummmmmm…?" as loudly and often as you like.

What pain relief, if any, is your mother on, by the way? Other things you might want to look at include her kidney function (eGFR and Creatinine) and liver function (LFT) test results. If you can talk her GP into giving you a print out, anything you want to pay attention to will appear in red, which is handy. Don't panic if there's lots of red; what you then want to do is find out how long that particular result has been out of the normal range, and concentrate only on things that are new.

If you have fallen out really badly with your social worker, see if there's a community rehab team or similar you can be referred to instead. Similarly, if things are going pear-shaped with the medical or nursing teams don't let them get out of hand - go to PALS and ask them to mediate.

Have you had a Carer's Assessment? - I hope that's a silly question, but just in case.

Ask to speak with a patient advocate or long term care ombudsman. He/she can help you sort out things.

Is there Hospice care available where you are? It sounds as though it might be appropriate to st least look into it.

Im not suicidal just pro euthenasia for me as I have said many times but in UK that is not an option YET. Mums condition has worsened and they have done more tests. Finally today the neurology consultant rang me and for once was honest. They dont know what is causing mumto have these 'episodes' they dont think they are strokes, they dont think they are seizures, they havent a clue if it is epilepsy but he has acknowledged the best place fore her is home which is where she keeps asking to be (when she isnt being bombarded by a %($^ social worker who quite frankly just wants to tick a %^&) box.

I have absolutely laid it on them that as a carer I am demanding training to manage my mum in a safe and healthy way and that may involve equipment that I will need but dont know about. He is in agreement with that.

Meanwhile mum has gone from asking me to kill her (not a chance in h*ll I would do this despite my beliefs) to completely the reverse. Today it is as though she is on speed. She cant stop talking and makes no sense whatsoever but she is happy and let me tell you I would take that over any other option. She can see my late Dad and is having conversations with hiim so all is well. Apparently shes going on a bus trip tomorrow to see the solicitor and then we are all going to the beach for a swim - Well of course we are!!!!

Mind blown as always but thanks for your support I was on a real downer yesterday xxx keep the faith

Geez, Jude! Sounds like you are feeling quite powerless and that would make anyone angry. Who is making the decisions? Are you able to put the house in your name in exchange for caring for her? Or are you feeling you just can't do it? 30 minutes is not even enough time to go for a walk, let alone take care of grocery shopping and your needs. Really sorry you're going through this. Please let us know how you are doing.

Things work out. Maybe not as you planned, but still good. Trust your gut, as pam says. You know your Mom, and you know your capacity, as a caregiver. Can they make your Mom go into a nursing home? Just refuse, smile politely, and tell them to back off, thank them for their time and concern.

If you will have to look for a new place to live, just get started. Make calls, You can do this. The trick is to get off your butt, and start looking. Easier said then done, I know, but any action relieves worry and depression. Maybe it is a blessing in disguise. We get so wrapped up in caregiving, we forget our own desires. This could work out for you. Have faith in your own competence and courage.

I am concerned about your suicide reference. If your thinking about the actual method, then your planning. Don't play around with this. Seek help from a therapist, a shrink. When things get bleak, remember , your Mom needs you. It would destroy her to think that her care drove you to this. Besides guns are messy and loud. You can always take the skills you learned as a caregiver, and get a job taking care of someone else. The need is great for respite. You could get 5 clients, one a day each, charge a hundred dollars for 7 hours. That will give you income. Their are solutions. Good luck.

I am so tempted to say you know what here it is YOU do it. Because I COULD in theory say it. I am adopted; I can give up POA and I could go back to work and live elsewhere tomorrow if I felt like it or go wandering the streets. They get paid extremely well to apply pressure to people to in vulnerable situations and I for one dont want to play any more. So I am signing off peeps and letting them get on with it....I am done

Wow.. they expect you to be able to sell your home in 6 weeks? That is pretty much unheard of here! It can take that long to get it ready to sell! And then a month or two until you actually settle! Hopefully you will have enough time to adjust and find a place.

You can see where we are headed, at least with health care. Our system is good as long as you have good insurance coverage and money.I'm sending you a BIG HUG and it sounds like you may need to place your mum somewhere. Maybe all of this was a cue to prepare so it won't be forced all of the sudden (?)

Can you negotiate your actual care times with the agency that provides it? Where we are (Ontario Canada) we are allotted so many hours per week, and I was able to arrange the best times directly with the care agency. And if they are throwing 30 minutes three times a day at you perhaps you could try to negotiate a solid chunk of respite hours instead.

Well the saga continues. She has had scans and xrays and tests and all sorts remember live in the UK so things are slightly different here. There is nothing wrong with mum at all and she has the capaciuty to make decisions - DESPITE THE PSYCH SAYING SHE HAD MODERATE TO SEVERE DEMENTIA only 2 weeks ago. Therefore after they bombarded mum and pressured her into agreement we now have her coming home - she cant stand she cant walk and she is now unable to have a shower (ours is upstairs) We are supposedly having carers coming in 3 times a day to relieve my burden. Just how that relieves my burden when she hates them and will give me earache all day over it and never ever wanted them I dont know. Oh you can go out for the afternoon. Hmm they are there for 30 minutes - not quite an afternoon then.

And what about the other 150 hours a week when they arent there? that would be me then - no they wont provide hoists no stairlift just me - and you all thought our system was good? Give me the USA any day - at least I would have the right to bear arms and shoot myself!

Jude, follow your gut feeling, demand to speak to higher authority. Get answers to what her whole neurological picture is. Demand an Ombudsman. Go to the Joint Commission. Call the CEO of the hospital if you have to.

What kind of hospital is she in? Has anyone mentioned Hospice as a possibility?

Jude, I am so sorry you are dealing with this, and particularly sorry that it will have such a large impact on your residence.

Would your mother qualify for Medicaid? Other than the house, what assets does she own? What kind of monthly income does she have? She can keep the house and still qualify. Would you be able to maintain the house on your own? Did you live there for 2 years as her caregiver?

As I understand it, dementia nursing care is primarily for people who are wanderers and/or have behavioral issues. If that does not describe your mother, she may be better off in a regular nursing home. My mother has dementia, as do the majority (but certainly not all) of the residents on her nursing home floor. There is another floor for dementia residents who need the extra protection of a secure environment.

I'm just suggesting some things to check into. Selling the house may not be the only way to finance a care center. Dementia care may not be the only choice for residential care.

Hugs to you as you handle this very challenging development. Please keep us informed about how this turns out.

So far they have said its a seizure but the scans have shown TIAS before so who knows. They tried to tell me she had a UTI but I had checked her urine and she had no temp so I KNOW that was all fine. Then it was perhaps a chest infection but I do know the difference between them all and it was none of them. I have seen her have a TIA and I have seen her with UTIs and infections and this was much more like a stroke sloped mouth slurred speech but they say nope not a stroke so I have to believe it was a seizure. I will let you all know more tomorrow - they tell me I have 6 weeks to sell up if thats what they decide so I quite frankly dont know what to do for the best. They have told her what jolly places they are - hmm not the ones I have seen .... great for assisted living but they are talking dementia nursing care which is a whole different ball game in this country and is just not what she wanted, but it will be taken out of my hands I suspect.

Oh Jude I am so sorry for you.. Did they check her for a TIA? They can look like sz but are different. Please take care of yourself and don;t let the worry get you too down.. easier said than done I know. xo

She has had a EEG and ECG and a CT scan and they still cant tell me. Sorry a bit sad here tonight as Mum is wanting to go into care now and theywill sell the house to pay for it. I sold my flat and have had to use the equity to care for her over the last 5 years so I am about to be made homeless and feeling quite devastated by it all

Has she had an eeg or scan?