I'm just desperate

Cazzita

Registered User
May 12, 2018
534
Have taken advice from the helpline. We have explored all avenues available & now will be resorting to letting what will be will be. Duty of care emails sent
Sw won’t take our calls, or phone when requested by SS ! Hospital are saying Aged mother deemed competent !
Even though she tells us the nursing staff are throwing stones at her husband when he comes to visit!
He’s in care 125 miles away !!
Hospital staff also told us we had to buy & incontinent pants !!!
Don’t know wether to laugh or cry as SW says we can’t use Mums account to purchase things as she’s competent!!!

I think I must be having a bad nightmare & will wake up one day !
Just when you think it can’t get any worse
Hope you do wake from this nightmare! What an awful attitude the SS have - very unhelpful. They have a duty of care, not you. Stand your ground and then take some time out and rest.
 

Sarasa

Registered User
Apr 13, 2018
829
Just step back and let SS sort it out when the proverbial hits the fan @DesperateofDevon . SO sorry that you're having to deal with it all. No doubt your mum will be phoning and asking why no one came to see her in the evening.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
I emailed to reiterate ongoing concerns with Mums failing health; but other than that I’m going to let them all get on with it.
Between visiting Dad in care home, & driving through heavy holiday traffic to get to Aged Mother in her own home I’m just doing the long distance journey once a fortnight.
So the SS will have to deal with the inevitable fallout. It almost feels as if they are pushing Mum to a crisis point, as they keep mentioning residential care- which Mum doesn’t want.
If Mum goes into residential care then SS won’t have to pay towards Dads & Mums care packages. Maybe I’m just cynical...
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Arrrgh!
VENT TIME

Warning this post will contain blind frustration!

So Aged mother’s neighbour & friend rang with her & the other neighbours concerns for mums health & welfare!!!! What can I do that I am not already doing - I ask?

So my solution to the issues she raised was call the SW or The Doctors Surgery & state your concerns- as I keep doing it but nothing happens!!!

Feel like it’s Groundhog Day......again!

Vent over
I’m going to have a good cry now!
 

canary

Registered User
Feb 25, 2014
11,264
South coast
Yes, just keep telling the friends and neighbours to call SS
The more calls that they get from people other than you, the more seriously they will take it.


(((((((((((((((((((hugs))))))))))))
SS will see it eventually
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Thanks @canary & @TNJJ
Have email asking them to call but no matter how many times I give them the number no one rings SS!!!!
Arrrggh!
Just pulling hair out ..... oh better not do that; as it’s very short now after disastrous trip to hairdressers for a pick me up treat!
More like trick or treat!!!!!

Talk about being kicked in the proverbial when you’re at rock bottom.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
So am now bleaching my home into submission!!
Very cathartic- bleach!
Aided by 2 G&T- I now know why it was called mother’s little helper.....
....... helps take the edge of mother which is very helpful!
All joking aside - when I’m cross/ annoyed/ frustrated etc the house gets a good clean; so why is it always in such a muddle !!!!
 

katydid

Registered User
Oct 23, 2018
51
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!
Hallo. Just posted a rant about getting care for my husband who’s vascular dementia, and the main point of it was that I feel it is a do it yourself situation!!
Communication is very often non existent, different messages within the same one hour period!!!!
I do t know your financial circumstances but f you need funding for your mums care, you need to begin by asking for a Continuing Health Care Assessment, And asking And asking And asking, and then demanding, and then crying. And finally you will become an emergency, due to carer breakdown! This is SW speak
And that’s when you begin The DIY !!! Find a bed, find out who the funding panel members are, the secretaries, the direct line telephone, or preferably email,(it is all MUCH better in writing!)
And then pass the info back and forth, and forth and back, and again!
Sorry if I sound annoyed . Cross.? Even irritated.........
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Hallo. Just posted a rant about getting care for my husband who’s vascular dementia, and the main point of it was that I feel it is a do it yourself situation!!
Communication is very often non existent, different messages within the same one hour period!!!!
I do t know your financial circumstances but f you need funding for your mums care, you need to begin by asking for a Continuing Health Care Assessment, And asking And asking And asking, and then demanding, and then crying. And finally you will become an emergency, due to carer breakdown! This is SW speak
And that’s when you begin The DIY !!! Find a bed, find out who the funding panel members are, the secretaries, the direct line telephone, or preferably email,(it is all MUCH better in writing!)
And then pass the info back and forth, and forth and back, and again!
Sorry if I sound annoyed . Cross.? Even irritated.........
Oh bless you, how awful that it’s your husband. I’m so sorry. Let me know how you are getting on & vent away I totally understand the frustration.
Hugs
Xxxxx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Ok so I’m dreading the driving to & from Mums. Holiday season means epic traffic jams & longer journey times on an already tiring journey. My M.E is not good meaning my T.I.A damage from 20 years ago is heightened. I’m maxed out on meds & antidepressants & cried yesterday when dropping my lovely daughter at the bus station so she could get to the airport to meet uni friend who lives in Ibiza! Oh my god I’m so jealous..... I’d love a holiday but don’t have the finances, time or energy if I’m honest.
I feel like my mums a drain mentally & emotionally & because of that I feel guilty that I don’t do enough. Vicious circle !!!

If only Mum wasn’t so negative & horrid about everything & everyone- that would be a help. I know the sooner I leave the sooner I will get back ......... but it’s a lonely long journey & I actually dread it; you’d think after all these years it would get easier.
OH will take me next week when mother has a hospital appointment for eye surgery. I am going to write to the consultant & make sure that he liaises with SW to ensure night cate package is in place after eye surgery. Mum didn’t respond well to surgery last time her paranoia really kicked in even though it was done under local anaesthetic!!!!

So let’s play Mum bingo, a bit like Trump bingo but more personal to the PWD.
1- where’s my cleaner
2- I need new glasses
3- I can’t do that
4- I don’t have much of an appetite
5 - I can’t make appointments
6- I don’t like the chiropodist that does house calls ( mum booked)
7- I’m not able to .....
8- why would I want to hear about other people’s holidays
9- my hearing aids broken
10- somethings wrong with the phone
11- I’m fed up of being told what to do by people
12- why do the carers come in so early in the morning
13- nosy Parker’s
14- I’m not being told what to do
15- Dr ****** is lovely she works so hard
( bloody doesn’t she works 2 days a week & runs other businesses!!)
16- I don’t get any visitors
17- oh guess who came to see me
18- why do the carers make me shower
19- I don’t like the shower
20 - I like a bath
21- I can’t manage the bath
( bath lift removed at mums request)
22- tattoos has been here (SW)
23- I can’t hear you, speak up
24- don’t shout you don’t know who’s listening
25- somethings wrong with this hearing aid
26- I heard that
27- they ( next door neighbours) are always spying on me
28- him next door
29- who does she think she is
30- busybodies
31- nosy neighbours
32- I have lovely neighbours
33- I don’t like them
34- I had men in the garden
35- men are talking about me
36- I can hear the men at night talking
37- the stone by the gate was moved
38- I can’t walk
39- I sat out in the garage
40- I don’t need people coming into the house
41- is Daddy better
42- what’s he looking like? Thin
43- can’t believe how well Daddy settles into there
44- does Daddy ask after me
45- does Daddy talk about me
46- how Daddy
48- daddy’s not a sociable person
49- Daddy’s an awkward ......
50- I need leeks ( I throw out veg!)
51- I haven’t got _________ ( cupboard & freezer full of)
52- no one will give me a lift
53- I don’t want to go there
54- why would I want to do that
55- don’t start
56- oh stop that blubbering
57- I didn’t kick you my foot just sprang out
58- oh shut up
59- I’m so tired all the time
60- I wish I was dead
61- oh I fancy a holiday
62- I’m not able to go anywhere
63- I went out for a little walk around the estate
64- saw that nice man
65- what do they think I am
66- I haven’t got any money in the house
67- oh I didn’t know I had money
68- I’m not stupid
69- I can sort it out myself
70- can you ring them for me
71- I haven’t had a letter from them
72- that letters been there for ages
73- I haven’t had a bank statement
74- why do they keep sending all this mail
75- can’t be bothered with it
76- I don’t understand
77- you do it
78- anyone would think I’m incapable
79- I’m quite capable you know
80- I’m not able to cook
81- no point in cooking for one
82- don’t buy too much the freezers full
83- is that all you got
84- what took you so long
85- I don’t like that much
86- that thing you got me was lovely I’ll have that again
87- I haven’t got any food in the house
88- don’t cook up anymore meals I will never get through them all
89- did you get me more money out
90- I don’t go anywhere to spend money


Bet I get a full house on Mum bingo!
:D:D:confused::eek:o_O
 

Sarasa

Registered User
Apr 13, 2018
829
I could tick quite a few of those off in regards to my mum and probably add a few more, but what are you dong going to see your mum? I'd tell everyone that you can no longer travel long distances, so it's up to SS to sort things out. Hope it goes as well as it can when you are there though.
 

Rosettastone57

Registered User
Oct 27, 2016
1,150
Ok so I’m dreading the driving to & from Mums. Holiday season means epic traffic jams & longer journey times on an already tiring journey. My M.E is not good meaning my T.I.A damage from 20 years ago is heightened. I’m maxed out on meds & antidepressants & cried yesterday when dropping my lovely daughter at the bus station so she could get to the airport to meet uni friend who lives in Ibiza! Oh my god I’m so jealous..... I’d love a holiday but don’t have the finances, time or energy if I’m honest.
I feel like my mums a drain mentally & emotionally & because of that I feel guilty that I don’t do enough. Vicious circle !!!

If only Mum wasn’t so negative & horrid about everything & everyone- that would be a help. I know the sooner I leave the sooner I will get back ......... but it’s a lonely long journey & I actually dread it; you’d think after all these years it would get easier.
OH will take me next week when mother has a hospital appointment for eye surgery. I am going to write to the consultant & make sure that he liaises with SW to ensure night cate package is in place after eye surgery. Mum didn’t respond well to surgery last time her paranoia really kicked in even though it was done under local anaesthetic!!!!

So let’s play Mum bingo, a bit like Trump bingo but more personal to the PWD.
1- where’s my cleaner
2- I need new glasses
3- I can’t do that
4- I don’t have much of an appetite
5 - I can’t make appointments
6- I don’t like the chiropodist that does house calls ( mum booked)
7- I’m not able to .....
8- why would I want to hear about other people’s holidays
9- my hearing aids broken
10- somethings wrong with the phone
11- I’m fed up of being told what to do by people
12- why do the carers come in so early in the morning
13- nosy Parker’s
14- I’m not being told what to do
15- Dr ****** is lovely she works so hard
( bloody doesn’t she works 2 days a week & runs other businesses!!)
16- I don’t get any visitors
17- oh guess who came to see me
18- why do the carers make me shower
19- I don’t like the shower
20 - I like a bath
21- I can’t manage the bath
( bath lift removed at mums request)
22- tattoos has been here (SW)
23- I can’t hear you, speak up
24- don’t shout you don’t know who’s listening
25- somethings wrong with this hearing aid
26- I heard that
27- they ( next door neighbours) are always spying on me
28- him next door
29- who does she think she is
30- busybodies
31- nosy neighbours
32- I have lovely neighbours
33- I don’t like them
34- I had men in the garden
35- men are talking about me
36- I can hear the men at night talking
37- the stone by the gate was moved
38- I can’t walk
39- I sat out in the garage
40- I don’t need people coming into the house
41- is Daddy better
42- what’s he looking like? Thin
43- can’t believe how well Daddy settles into there
44- does Daddy ask after me
45- does Daddy talk about me
46- how Daddy
48- daddy’s not a sociable person
49- Daddy’s an awkward ......
50- I need leeks ( I throw out veg!)
51- I haven’t got _________ ( cupboard & freezer full of)
52- no one will give me a lift
53- I don’t want to go there
54- why would I want to do that
55- don’t start
56- oh stop that blubbering
57- I didn’t kick you my foot just sprang out
58- oh shut up
59- I’m so tired all the time
60- I wish I was dead
61- oh I fancy a holiday
62- I’m not able to go anywhere
63- I went out for a little walk around the estate
64- saw that nice man
65- what do they think I am
66- I haven’t got any money in the house
67- oh I didn’t know I had money
68- I’m not stupid
69- I can sort it out myself
70- can you ring them for me
71- I haven’t had a letter from them
72- that letters been there for ages
73- I haven’t had a bank statement
74- why do they keep sending all this mail
75- can’t be bothered with it
76- I don’t understand
77- you do it
78- anyone would think I’m incapable
79- I’m quite capable you know
80- I’m not able to cook
81- no point in cooking for one
82- don’t buy too much the freezers full
83- is that all you got
84- what took you so long
85- I don’t like that much
86- that thing you got me was lovely I’ll have that again
87- I haven’t got any food in the house
88- don’t cook up anymore meals I will never get through them all
89- did you get me more money out
90- I don’t go anywhere to spend money


Bet I get a full house on Mum bingo!
:D:D:confused::eek:o_O
You could have been writing about my mother-in-law here. She had about 10 phrases that used to come up constantly and I'm not talking about when she had dementia. I'm talking about years and years before she had the diagnosis . Her favourite was "all women are bitches". This came from the fact that all her life she had been jealous of other females for whatever reason. My husband and his sister made up a great long list of well-known phrases coming out of her mouth and like the bingo they used to tick off the phrases everytime they heard it. As you say it was invariably a full house
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
I could tick quite a few of those off in regards to my mum and probably add a few more, but what are you dong going to see your mum? I'd tell everyone that you can no longer travel long distances, so it's up to SS to sort things out. Hope it goes as well as it can when you are there though.
So I go down once a week/ fortnight if lucky & get in her shopping; check post etc. Good job I do as SW has cut care package down to 2 visits a day- but cheeky as Mum is self funding & OH & I have to fill in the forms etc & sign it off!
Hey ho!
Mum was compos mentis today; I had a proper conversation with her. Poor old thing really hadn’t a clue as to what she had agreed to !!!
Brucie Bonus was that Mum wants to know why she’s like she is, so GP has been requested to arrange an appointment with the dementia consultant! Rang & requested it there & then & asked if they could confirm or rule out Lewy bodies dementia- & get a definitive diagnosis once & for all!
The receptionist was lovely
So fingers crossed!!!
 

TNJJ

Registered User
May 7, 2019
1,042
cornwall
So I go down once a week/ fortnight if lucky & get in her shopping; check post etc. Good job I do as SW has cut care package down to 2 visits a day- but cheeky as Mum is self funding & OH & I have to fill in the forms etc & sign it off!
Hey ho!
Mum was compos mentis today; I had a proper conversation with her. Poor old thing really hadn’t a clue as to what she had agreed to !!!
Brucie Bonus was that Mum wants to know why she’s like she is, so GP has been requested to arrange an appointment with the dementia consultant! Rang & requested it there & then & asked if they could confirm or rule out Lewy bodies dementia- & get a definitive diagnosis once & for all!
The receptionist was lovely
So fingers crossed!!!
Everything crossed for you.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Everything crossed for you.
I feel like we took one step forward- I’m just waiting for the two steps backwards!
Sounds pessimistic but until we get a definitive diagnosis we are circling playing a waiting game for the next crisis; which will be arriving soon as another UTI as care package has been reduced from4. to two visits !!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,410
Yesterday my mum said another Mum bingo special

91- I wish I was dead!

I knew there were more ......
So I calmly said “actually you don’t, because if you did you wouldn’t be eating & drinking. I think you just feel overwhelmed by your situation & are venting your frustrations”
I then went on to say how my daughters best friends mother has been given a terminal diagnosis & is desperate to see her son marry next year & the arrival of a grandchild. Mum immediately said how sad that was & how awful for them all. I knew empathy was in there somewhere even if it’s just the polite thing to say it stopped the pity party mid flow!

So asking her what she could do to improve her situation, ( common grumble from mum is everybody keeps telling her what to do!) led to more negativity!! But no yesterday I wasn’t going to be that person I’ve been I was determined. So I kept bringing everything back to her not having a diagnosis & how worrying that must be, how frightening not knowing what was wrong health wise.
Yes Mum was more lucid yesterday but she’s a whiliey old fox, & loves a power game - manipulation being her specialty!
Not sure I’m up to the challenges but hopefully rationality might come through.

I live in hope!!