Don't know what we're facing...

[florence43]

New update:

We're currently facing...well, we don't know. When I say "we", I mean my sister & I because it can only affect us in a way that nobody else can really, truly understand.

Mum's been in and out of hospital 4 times in the past 3 weeks and on Monday - 5 days ago - she was discharged for the 3rd time, able to walk unaided, get up from her chair & bed and eat & drink with a little assistance. She originally went in with a UTI.

Now, something that I though would happen over months has happened in days and she cannot walk, stand, feed or drink. I've been advised to look for Nursing Homes.

Wow! It's all happening so fast. Is this common? I keep hearing about "downturns". What are they? I've heard it said a lot recently with regard to her constant to & from hospital saga. But really...in 5 days? Go from walking unaided to being immobile? On Thursday the carers needed three people to get her out of her chair to the bed (downstairs) and even then, she was dead-weight. She has been since.

Could it just be the heat (am I reaching here?)?

On Thursday the social care lady at the hospital spoke to me (I called her for independent advice as someone I actually trust and who knows mum), and she made me realise that looking at homes is a positive thing for if and when the time comes. She agrees that the best place for mum is her own home (well, that was on Thursday). She said she didn't think mum met the criteria for continuing care so we started looking at options for funding this if it had to happen. However, the Assessment Team were taking over her care and their aim is to assess her needs in terms of remaining ion her own home.

One day later...she's back in hospital. They cannot lift her. She won't drink. She needs hospital equipment at home so that she can be washed, pad changed etc etc etc. So I go home and clear the living room ready for delivery of bed etc on Mon, along with delivery of mum, hopefully.

My lovely social care lady calls and she's put in an urgent request for continuing care. WOW! Another drastic change. Suddenly, rapidly her situation has changed so much that she's eligable.

I say I may not come by that hospital that day (Yesterday) because I had to get back to see the children (1hr 30min drive home) but that I'd see her Monday. She said she thought I should...so I had no regrets. WOW! Another drastic change. Where did THAT come from? She was very honest and said she had a gut feeling and that she wanted mum to prove her wrong. In her words, she didn't want mum to die in hospital...

Mum might not make it? But she was walking on Monday. It's not making any sense at all, and my husband and sister are saying it's just the heat, but I'm sort of sharing Janice's gut-feeling.

But it's all too fast isn't it?

I'm a funny one for signs you know. Yesterday, dealing with all this, on top of the previous day, dealing with it in a different way, I feel enveloped by mum's life. I had 3 strange coincidences (signs?) that strangely make me feel at ease. The first was when I was on my way to visit mum in hospital. I was dithering and making sub-conscious decisions to stay longer at her house...tidying, buying flowers, FEBREEZING the armchairs, carpets & curtains!!!! I didn't want to go to the hospital... But as I left the house, I spotted a familiar face. Now I never see anyone I recognise at mum's anymore except her dinasaur nosy neighbours (who'd prefer she was in a home, so they'd have "normal" neighbours again. Anyway, it was the District Nurse from the Hospice where my dad spent his final weeks. How strange, her mother lived in the same road. She'd never mentioned it before on the few occasions we met last year.

It was a short chat then I was off...

Saw mum. She was lying in a pool of her own urine...again...but was so happy to see me. She doesn't speak, but opened her eyes wide and said a clear and cheery "Hallo!". After that she drifted in and out of my world and hers. Very sleepy.

After leaving (and after waiting til they came to change her sheets) I found there were terrible hold-ups on the M25 so I decided on a different route home. As I approached the roundabout, I was faced with a big sign: ROAD CLOSED. To cut a long story short, I followed the diversion, had no idea where I was til I recognised the area. I had only been there for one other reason, same time last year. Dad's Hospice.

When I got home, I told my husband everything that had happened and all the updates on mum. I mentioned that we may have to cancel our holiday to Menorca again this year if things don't settle. We had to cancel our trip to Menorca last year because Dad was dying, and we're supposed to be going in 4 weeks time. I said we were destined never to go...then I remembered another wierd thing that had happened on the way home. As part of my diversion, I took a wrong turn and had to do a U-turn in a little side road. It was called "MENORCA DRIVE". Uncanny. Maybe that's a sign that it's the closest I'll get to Menorca this year.

Don't know and maybe it's my nature to think the worst, so that any good news is easier to handle, but my gut says things aren't looking good. But I still can't fathom how quickly all this is happening. I'm looking at Nursing homes near me tomorrow. I just hope she gets the chance to get there, so I can spend more time with her.

Any experiences (perhaps without the wierd "signs"!) of such rapid deterioration?

Head spinning,

Annie x x x x

 

[lin1]

sudden downturns do happen,but Im thinking along the lines of another infection such as another uti

my mum used to get them often and normally had to have two courses of different antibiotics b for the infection properly cleared and it took a week or two after the uti had gone for mum to get back to normal,unfortunately that doesnt always happen,

I suggest you speak to doc at he hospital n get them to test her wee again or check for chest infection

 

[Willowgill]

Hi Florence

Reading this it could be my dad you were writing about. He went from being able to walk unaided, sit at our table and eat a hearty meal, go to the toilet unaided, sit and watch his favourite dvds (albeit after I'd put them on for him) and have a 'normal' (for him) conversation with us to being unable to do any of the above in the space of a week. He fell and was taken into hospital where he deteriorated so rapidly we could see the change every day. Almost seven weeks later and he was finally discharged yesterday into the care of our local care home where my mum resides. I find the decline difficult to comprehend and yet I know the same happened to Mum so should not be so surprised.

UTI's do cause sudden and rapid changes - Mum has had several over the last year and they take a terrible toll both mentally and physically. It's not always apparent to the nursing staff as they don't know your loved one as well as you do so I would just ask if they have checked your mum's urine again - maybe she's on antibiotics and they haven't worked? Or sadly maybe it is just the next phase in this dreadful illness. Either way I think it may be wise to start looking into nursing homes and perhaps ready yourselves for making that awful decision. You have your sister which is good (I'm an only child) to talk this over with and although we all know what you're going through, as you say, you are the only two who know in your own particular circumstances how you feel. It does sound like your social worker is on the ball though so fingers crossed you get the funding. We did.

I too believe in 'meant to be' - things happen through life for a reason and sometimes you realise later that it was the path you were meant to tread. I do hope you get to Menorca - we went once and it was a lovely place.
Gill

 

[Onlyme]

I have just read your previous posts and she had a UTI a couple of weeks ago. It might be that the old one hasn't gone or she has a new one.

Has your Mum perhaps had a TIA (very small mini stroke) as those can really change people overnight.

I am not much of a one for signs but I do believe what will be will be.

I hope you get all the equipment for your Mum and that she proves the social workers wrong.

 

[jane-anne]

Hi, have been reading your posts and have decided that my situation with Mum is no different. One year ago she was able to walk free albeit with a stick, go to restaurants, feed herself and converse well. Now, she does not walk willingly(using a frame), she does not eat or drink willingly,and cannot make us understand her. It seems most times, when I try to help her, she rejects me. Also it is like "how dare you do this to me". My dog is getting fat on her rejected meals. I am the last of my family alive so there is no-one else to look after her. Her carer, who gets her up in the morning and has her for 36 hours a week to give me and my husband respite, says she has never met anyone to go downhill so fast.It probably is due to mini-strokes.
she is on mermantine and an anti pschotic drug.
I am at my wits end as to how to feed her, when she keeps batting my hand away all the time. When we give her her food, she plays with it or eg bread, pulls it to pieces.
I do not like myself much because she makes me so mad (luckily I have something called rescue Remedy). I only want to help her but if only she will let me.
The next move is going to have to be a Residencia - we live in spain - so in a couple of weeks time we are going to have talks with the social Worker to discover how things are done here.
Am I selfish in asking for my life back? She has been with us for 4 years now. My brother died last year but we did not tell her then, now she knows but cannot understand death except she says she does not want to die.

 

[Verity123]

Hi Annie

My MIL has recently had a rapid decline form being fairly mobile to bedbound and not eating in a rapid amount of time. She is also in hospital at the moment and does not appear to be getting better. Interestingly although she has not tested positive for a UTI (which she had previously) the doctor at the hospital diagnosed a chest infection (despite two GP's saying her chest was fine). She has been prescribed antibiotics but we have had terrible difficulty getting her to take them.

The doctor in the hospital, who is fantastic, has said not for us to assume her decline is down to dementia (although it may turn out to be), as it is difficult at times to separate delirium from infection , from dementia. It might be worth pursing the infection route. I wish you well x

 

[florence43]

Thank you!

Thank you all for the support and advice. I am always try to plan (part of my nature) and I know I can't, know I shouldn't, so I'm on this impossible path to try and get things clear in my head.

There are always so many "what ifs". What if is the heatwave making her sleepy? Another UTI? A chest infection? I just want it all to be made clear. I always assumed they would automatically check for the UTI or Chest Infection. Is this not necessarily the case then?

Her hand was so hot on Friday. I can't work out why, because it would make sense in a way (it was over 30 degrees in the hospital) but she was lying in a wet bed (they left her in her own urine for how long, I don't know, but it had spread from her shoulders to her ankles). If it was the heat, wouldn't the dampness (however disgusting) balance it out? Why would her hands be hot?

It sounds like an infection, but as I mentioned, wouldn't they have ruled this out?

Surely they won't send her home tomorrow with another infection? I hope not.

I'll let you know how it goes, and thanks again,

Annie xxxx

 

[maryw]

Dear Annie
Heavens, you are in the thick of it and I feel for you. Particularly difficult when you have a holiday booked...

I'm sure the hot weather is not helping your mother. I hope they make sure she does not become dehydrated in this weather. They should have a fan on the ward and you may be able to ask for it to be moved nearer to her. She sounds weak from the infections and it is really hard for both of you that she has been in and out of hospital so much. I would make sure she is not discharged until the infection is under control. Can you speak to the Consultant's secretary and get more information about her condition?

Re the "coincidences"... who knows? I had some strange things happen around my Mum's deterioration, which are hard to explain rationally.

Thinking of you and hoping for better news tomorrow xx