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I'm just desperate

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Of course it is. I would hate to have been in this position too. Unfortunately, if you have been seen as being the problem you have to let them see that it isnt you. Stepping back will show them the true picture quicker. If you are plugging the gaps your mum s problems are not seen and you are still being blamed, so the situation goes on for longer. You have to shine a cruel spotlight on your mums problems so that they are seen. Its a question of having to be cruel to be kind.

Let everyone know that you would like to help, but as your mum is considered to have capacity, you are not allowed to. Be prepared to pick up the pieces quickly when it all goes pear shaped.
The worst bit of it is we did step back & she’s ended up in hospital for 5 weeks - but at least now she has a care package to ensure she’s eating & drink & taking her meds am/ lunch/ tea
It’s not fair on the poor Carers walking in blind to the situation

But I can do no more now do yes
The proverbial will hit the fan !
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,763
Nottinghamshire
I hope people come to their senses soon @DesperateofDevon. I well remember the stress I was under last year trying to get suitable care in place for my dad.
In the end I had to say I wasn't prepared to help with his care anymore and it was up to them.

I was lucky and it took only 2 (very long) days for things to be sorted. I hope you get a quick result too.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So folks I’ve tried all advice & now am going to just stop doing all I can to prevent something awful happening again.

Duty of care doesn’t apply or discharge procedures

I am going to go & feed my Dad in the care home & maybe he might recognise me today if I’m lucky
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So my Mum was collected by us on Thursday & brought back to her home 125 miles away from were we live.
Poor Mums confusion & deliriums are on going but I am hoping manageable.
We never heard from the SW- but the discharge team were excellent & provided pads as Mums still incontinent at night & has slip ups during the day still.
It’s lovely that she has 3 visits a day package 3/4 + 1/2 + 1/2 hour & I believe lucky to be receiving that.
The care team are compassionate & excellent at coaxing, encouraging Mum to get up etc. Mum will love finding out all about them - she just might not remember.
District nurses etc have been notified & the hospital have raised dementia query as per protocol.
Discharge note likely hood of falls high, cognitive decline since admission, & frailty so no surprises there.
Given copy of resus request form, Mum unlikely to respond so DNR in place.
One decision I’m thankful I don’t have to make.

Have applied for night time attendance allowance as advised by DWP
Sent off relevant evidence but I’m not going to stress over whether she gets it or not.
How lovely to be in your own home after 5 weeks in hospital, most of which she has no recall - at times dementia is kind to wipe out that length of stay & illness.

I’m standing back, but on tip toes ready if required.

Going to have to get used to having a back up system in place, but no longer feel that awful sick feeling continually. Actually going out for a meal at some point with hubby ( he of the sainthood in post) - might be tempting fate as it did last time but I’m starting to breathe again tentatively
I know it’s not going to last - realistically 88 years of age & health are against us; but my Mums home in her house, stocked up with enough food & goodies to ensure her happiness & wellbeing.
I have achieved at this moment in time what I couldn’t achieve for my Dad. Sadly.
I am proud & thankful of all the help & support received from all parties involved.

Bike analogy-
Life’s wobbles will continue but I feel like I’ve got stabilisers on !
 

charlie10

Registered User
Dec 20, 2018
397
lovely to hear you sounding more relaxed @DesperateofDevon......and glad your Mum doesn't have bad memories of her hospital stay. I hope you and your husband enjoy your meal out....it's probably been a long time coming.....and give yourselves very well-deserved pats on the back for everything you've done for your Mum :)
 

Trekker

Registered User
Jun 18, 2019
206
London
So I’m new to joining this or any forum, but not new to avidly reading to gain any bit of insight or help from them over the years. Sound familiar?
So here I am with that horrid heart racing, bile in back of throat , continual headache & inability to function as a normal human being feeling that’s haunted me for almost a decade. Familiar ground I imagine for many who search through the forums when that rock bottom approaches as you plummet downwards.

Aged mother has undiagnosed dementia, recurring UTIs over the years that have only just lead to a hospital admission ( one month & counting) Now after having reoccurring UTI in hospital, ( Aged Mother been downing packets for cystitis for years!) suicidal thoughts & delusion, night time incontinence & urge incontinence ( this has all been ongoing for years) pneumonia - just finished treatment on Thursday when coincidentally she fell in hospital big bruise on head....... my aged parent is being discharged on Tuesday
Oh a care package ..yes 3 times a day
am/noon/tea
My husband ( I am to emotional- or so I am told! to be totally rational & not come across as mildly hysterical at times!!!! Really!!!! & breathe!) had a conversation with a nurse of authority shall we say who informed him that our aged relative is able to get out of bed, wash ,change their night clothes & bedding. Strange that Aged Mother was unable to do this 6 months ago let alone now with further cognitive deficiencies. Even stranger that nursing staff are still changing night clothes & bedding repetitively during the night in hospital.
But my life is weirder than that... oh yes friends .... if you’ve got this far in reading this post you are almost on my Christmas card list!!
On Thursday after being driven over the 125 miles ( each way!) to the hospital by my husband who didn’t finish work until 6:30pm ( sainthood in post!) I was greeted by staff ( yes I rang to ask if it was ok after hours to bring in clean washing) & informed by the lead nurse that she’d fallen & they suspected cause was TIA. Ah - not surprised as this has been happening a lot recently & yes hospital admission , GP informed. Infact it’s been going on for years ! She’s been through the fall clinic etc, & my Grandmother had exactly the same thing as did my Great Grandmother.

Reassured Aged Mother with big bump & bruise on head not being discharged anytime soon - nor the next week!

So the return journey home - (oh just to let you know folks my daughter drove me down the previous day to collect washing & visit Aged parent in hospital , & hubby soon to be saint did the Saturday driving to collect & deliver washing & visit. ) hubby & I we’re reassured that aged parent is in good hands

Imagine the next day receiving an email after office hours saying that same Aged Parent was going home on Tuesday!!

Another brief email if you can’t be there hospital transport will be provided!

Umm ... I’ve got the house keys, her purse & bag, plus we’ve cleaned out the fridge!!! It’s not like we haven’t told the hospital this or explained our situation
- I’m disabled & rely on others to take me on long distances
Plus I am self employed & working on this Fri/Sat/Sun with the aid of a support worker( hence hubby soon to be saint driving me & the clean laundry down!)
Hubby works during the week 200+ miles away
Daughter lives away & incidentally has a life of her own as she rightly should

So tomorrow I am working & mostly sleeping ditto Tuesday ( supposedly!) & Wednesday! How can I or my (soon to be ex) hubby ( if this situation doesn’t get resolved) be in two places at once?

Is it unreasonable to ask for a couple of days extension of care in hospital?

Ps
My aged father has Alzheimer’s & vascular dementia & was placed near me in a care home - Aged Mother wouldn’t allow anyone in to help him & wasn’t capable of feeding herself or him or giving him meds etc. Yes GP informed but Aged mother deemed competent by social services - What month is it? What is the queen called?

Ops I didn’t tell you Social services still deem her competent even though she has attacked neighbours & family verbally & physically, is found wandering not knowing where she is, has paranoia, delusions, hallucinations & has been deemed vulnerable by previous hospital admissions & won’t have tests done as is frightened of the results ! Our LPA might as well be used for toilet paper when we are cut short!!!

I need help & advice

Help!
I suggest you demand she is seen and diagnosed by psychiatrist while in hospital as it is clear she has undiagnosed dementia and psych not social worker input required to determine this. They are best places to assess capacity. Say she is a clear risk to herself and others and you fear for her and your own and neighbours’ safety if she is returned home, that your own health is now so adversely affected that are unable to provide care to the vulnerable adult she is and will not accept her return home as not safe for either of you. 7 to 8 week assessment period in care home is good option and often leads to permanent placement (respite is different and leads to discharge so don’t accept). Hope that helps x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
I suggest you demand she is seen and diagnosed by psychiatrist while in hospital as it is clear she has undiagnosed dementia and psych not social worker input required to determine this. They are best places to assess capacity. Say she is a clear risk to herself and others and you fear for her and your own and neighbours’ safety if she is returned home, that your own health is now so adversely affected that are unable to provide care to the vulnerable adult she is and will not accept her return home as not safe for either of you. 7 to 8 week assessment period in care home is good option and often leads to permanent placement (respite is different and leads to discharge so don’t accept). Hope that helps x
Thank you, but mother is discharged from hospital & is at home. She had already cancelled the lunch time care package - little minx! Saying the social worker told her to..... not true ! Social workers got her work cut out with mother, & I wish her luck!
It won’t be long before it all goes wrong - again!
But I’m not getting sucked in this time!
Honest!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Glad to read that you're feeling a bit calmer @DesperateofDevon I hope you and your husband enjoy the meal - celebrate that award of the sainthood! ;)
Glad to read that you're feeling a bit calmer @DesperateofDevon I hope you and your husband enjoy the meal - celebrate that award of the sainthood! ;)
The meal out proved that we both still have a sense of humour & were able to provide non repetitive conversation!
Hurrah!
His sainthood is still yet tone delivered!
Definitely feeling calmer, accepting that this is what it is & not looking to solve everything!
I’m doing everything I can, Mother needs to help herself a little - or not.
Thank you for all the support
X
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Well I am actually starting to sleep through the night - a rare but delightful phenomenon. I actually don’t feel sick every minute of the day, also my heart palpitations have eased. Stress does terrible things to your body. Both him indoors & myself have felt exhausted this weekend- & have realised it’s because some of the worry has been lifted; it’s not all just down to us anymore.
After years of this awful stress, I giggle at jokes, make my hubby breakfast in bed - as we are not up before the sparrows racing around for 250 plus miles doing everything & catching up on paperwork for an elderly relative!!
Am I selfish ? Yes just a little bit but I have spent decades running around looking after Mum & Dad at the detriment of my own health & happiness. Yes I still feel guilty, it’s inbred in me; but I’m a happier nicer person!
Even those of you who have never met me can read the transformation in the relief from constant worry & stress.

Aged mother is still up to her tricks, she’s cancelled the lunchtime care package - I did hope she’d stick it out longer than 4 days ; but I expect it won’t be long before she cuts back on the others. I’m not chasing, or going to try & get her to change her mind.
The social worker has the pleasure of that, I am going to be a daughter for once in my life & not a carer.
Mum is deemed competent- so decisions even poor ones are made & the consequences of those will have lasting effects for Mum; but they are her decisions & I respect that.
Not sure that him indoors will but he’s a grown man who is able to voice his own disapproval.

So next week him indoors has a weeks holiday - no we haven’t booked a trip away but I fully intend to treat that week as if we had. We will not be visiting aged parents, a first for me.... Neither will I be ringing everyday / several times a day to see if all is well.
I’m going to do things like eat an cream tea looking out over a fabulous view, go for a lovely walk with him indoors, watch a cricket match... ..... ooh starting to get excited now.
Let’s see if I keep to my word.
That’s all folks !
See you on the other side
X
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
lovely to hear you sounding more relaxed @DesperateofDevon......and glad your Mum doesn't have bad memories of her hospital stay. I hope you and your husband enjoy your meal out....it's probably been a long time coming.....and give yourselves very well-deserved pats on the back for everything you've done for your Mum :)
You have to laugh ... Mums decided she can’t cope with the lunch time visits after 4 days so has cancelled it!
Him indoors has a weeks holiday next week , no we can’t afford to go away but I am going to treat that week as if I am!
Hubby needs a geriatric free week... for his own sanity. Me I am eyeing up the cocktails at las iguanas!!!
Will definitely be more relaxed
 

silversea2020

Registered User
May 12, 2019
81
Enjoy your very well deserved ‘you’ time ...it’s lovely to hear you less stressed & by golly there are too many stresses when trying to deal with a lot as you do & like so many others here on TP ...I really do think there comes a point when you’ve done your best & you are also a priority.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Enjoy your very well deserved ‘you’ time ...it’s lovely to hear you less stressed & by golly there are too many stresses when trying to deal with a lot as you do & like so many others here on TP ...I really do think there comes a point when you’ve done your best & you are also a priority.
Totally agree with you on that, it’s only through this forum that I have found peace of mind. Some frank truths from those in the same position but with years of life experience - & able to view from a wider perspective.
TP really has been a life line - wish I’d joined earlier on this life journey
Thanks folks again
X
Sanity relocated & functioning
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Visited Dad yesterday afternoon in CH - very back down the rabbit hole like Alice in Wonderland. Despite the 27 degrees outside he was dressed for winter with thermals & fleece plus layers! :cool:
I was hot just looking at him :p
Still he was content & happy browsing through a book on lighthouses, & loved the shirts I’d brought in for him:)
Also found Guinness flavour crisps which were a big hit!
A favourite of his - bless not that he remembers
;)
So going down the rabbit hole/ into the reality that is Dads life was a chilled out time munching crisps together & looking through his book - he didn’t remember I gave it to him years ago but he still loves it

Happy days

Hilariously he thought I was a teenager & told me not to be late back in!
I wish!!!!!
But the smiles of recognition on his face even though he didn’t say my name yesterday make it one for the memory book!

YaY!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Dad went on an excursion on Thursday to the beach with the CH not that he remembers. I’m sure that he will have enjoyed himself, I will look forward to seeing the photos & chat to those who took him.
Yesterday he was tired, confused & accident prone in the toilet department shall we say. I expect this is a pay off from his trip out.

I was pleased to get a lovely smile of recognition but his love of a good old fashioned black & white westerns - a John Wayne classic - meant that my visit was more of an annoyance than pleasure!

Still my geriatric admirer in the room opposite Dad was thrilled to see me - I think I might have got myself into a bit of a situation as unintelligible conversation with this gentleman ( on his part!) resulted in him blowing me kisses & smiling & laughing!
Oh well .... ...so I blew some back!

I do get myself in these pickles!!!

The CH got an outstanding in inspection & is having a bit of ado to celebrate this afternoon, music & afternoon tea.
Have contributed wine to go in the outstanding hamper, guess there is a raffle. Hopefully one of the staff will win it!

How lovely to have a tea party to go to

Might have to bust out some moves again on the dance floor :eek: :D :rolleyes:
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Haven’t posted for a while as keep hoping that I will wake up .... & a bit like that episode of Dallas it was all a bad dream!

Nope !

So Aged mother has had paramedics out, refused extra help, off her legs - as the paramedics & carers put it & a raging temperature etc.

Long story short district nurse rang me requesting I come & stay to look after Mum or bring her back to stay with me.

The laughter heard was mine! I live in a house, am registered disabled, have a support worker 3 mornings a week as hubby works away & has my mobility allowance which I had been in receipt of at higher rate taken away by a court last year as I had driven 125 miles to look after Mum as there was no one else! I was deemed mobile!!!

I stopped laughing to ask the district nurse how I was expected to travel as my car is in bits in garage & my husband works away; or how a registered disabled person ( that’s me I still qualify for the higher care component!!) was expected to cope with an incontinent parent 125miles away from the carers & access the bedroom via the stairs as to quote the district nurse & carers ‘ your mums off her legs’

Ah I think the saying goes you really couldn’t write it!

So the district nurse said ‘is that a no then?’


I came off that phone call & wept!
Then got really angry
Cried a bit more to my hubby over the phone, then exhausted slept!

Aged mother is still deemed competent
GP still hasn’t replied to my emails since issues & dementia criteria were triggered by hospital

Lovely care team hitting same brick wall
At least the GP is consistent
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Oh update!!
Hubby who should have sainthood got back Friday late but 6 am start drove me to Aged mother’s - traffic horrendous even at that time

Surprise Aged mother now has commode in her bedroom??

No clinical waste bags yet! So lovely carers taking away that waste!!!!
Yes I’ve emailed & no I haven’t got a reply!
So sent email again as advised by lovely paramedics who rang on Wednesday

Did check with District nurse who rang on Thursday that GP has received the emails, yep- also got a phone call from a secretary later on to say the doctor is aware of the issues!

Shame the doctor doesn’t do anything or put into action the discharge from hospital forms or requests...... but as long as she’s aware I’m sure that I won’t need to do a thing & it’s all going to fall into place!

So the proverbial poop has hit the fan.
Aged mother out of antibiotics on Saturday with raging temperature & UTI

Hubby even frustrated by it all but lovely carers & helpful advice after requesting a Doctor at 10 am a Doctor on call came out at 8:35pm!
More antibiotics & hubby dispatched to purchase Kiley pads I think they are called as Mum can’t get to the commode without help, & the pads don’t hold the flow overnight

But mum knows that Boris is now prime minister..... ......so that’s alright!
 

nae sporran

Volunteer Host
Oct 29, 2014
7,046
Bristol
Sorry you had such a horrible time with medical people failing to understand your needs. Losing your allowance under the circumstance is so unfair.
Can anyone at AgeUK, the carers support centre or your local Alzheimer's Society help with your case, or have you exhausted those possibilities.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Sorry you had such a horrible time with medical people failing to understand your needs. Losing your allowance under the circumstance is so unfair.
Can anyone at AgeUK, the carers support centre or your local Alzheimer's Society help with your case, or have you exhausted those possibilities.
Exhausted & now moved on but not forgotten!
It’s mums GP that is the issue but at least the care team are hitting the same brick wall!
I live with my glass half full, & believe in karma

As long as they deem mum capable I can only stand back & watch the house of cards created fall, & be ready to step back in

Thank you for replying
This forum is excellent as all the support makes a big difference