PhoenixDaughter Asked April 2015
Can anyone tell me what to expect?
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Mum had 3 seizures yesterday one after the other in the space of 4 hours. She has come round from it but is incredibly low (doesnt take much to make her liek that to be fair) and now appears not to be able to stand and certainly can't walk at present. I know we are all individuals but has anyone experienced this and then seen a progression to walking again or am I to expect the slippery slope. Docs say it is probably epilepsy. You know when a doctor is lying though - their lips move!!! They dont have a clue as to what is causing it but of course they are never going to admit to being human are they? They are talking about sending Mum home tomorrow and I just think this might be a tad too early if she cant even bear her own weight!
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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
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...
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
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.
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
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.
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!
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.