Post respite rant

canary

Registered User
Feb 25, 2014
11,300
South coast
OK, so OH has been back from respite for just over a week. I have decided that Things Have Got to Change, so before he came back I tried to contact care agencies to give OH a shower a couple of times a week (can introduce more if necessary), SS to get a referral to day care and my car mechanic because my car has packed up.
So, this week has been none stop with phone calls to and from care agencies. Most of them cant take on new clients *sigh*, so Ive had to try other ones. Three different people from SS have phoned me up and asked me exactly the same questions (Three? Really?? It takes three people???) and all three told me that they would get an urgent assessment of OHs needs. The care home phoned. Ive had to organise the DN to come and change OHs catheter - I was supposed to go to the GP get him one on prescription so the district nurse had one to replace the old catheter, but the GP sent the prescription to the pharmacy the care home used and I couldnt go and get it because my car is defunct. Had to phone DNs about this and then she didnt come the day it was organised, so I had to chase it up. OH has had 2 appointments - one in London (took all day) and one at the local hospital. I had to phone up and arrange transport for us (because of no car). Nothing is simple - there are menus to navigate, directions to other numbers and when you finally get on the right line you are told that you are *five* in the queue................

In between all the phoning Ive been backwards and forwards to the GP - about the catheter, about transport to hospital appointments, to request prescriptions for meds. Every time I get back there is another message on the answerphone....... The DN eventually arrived and changed his catheter (took two hours because she set up all the paperwork), care agency and came for an assessment (also took 2 hours), but will be starting in a couple of weeks. The person I contacted before Christmas about a fence panel that needs replacing chose last week to phone and say that they will be coming round on Wednesday, Ive done so much washing Im surprised that the washing machine hasnt packed up in protest (shh! dont say it out loud in case it hears!), sorted out an internet shop, taken deliveries for catheter bags, plus, of course, all the "little" things like caring....... :rolleyes:

So today Ive crashed. OH has just informed me that the hinge on the shower screen has broken. How did it happen? Well, Ive no idea, but I think the fact that OH told me about it when normally he is oblivious to things like that is a bit of a clue

OK rant over. Ive got to go out and buy some more milk.
 

Donkeyshere

Registered User
May 25, 2016
459
channel islands
Hi @canary- can only offer you a virtual hug and some Guernsey milk - at least you have internet shopping not something we have on the "Rock"! It seems that everyone is having a bit of a tough time at the moment, more so than usual. I hate having to do all the organising - it makes me wonder how carers keep going as long as we do before we give out. If there was such a thing as a "dementia god" I would be swearing at him quite profusely! Keep going and hope things ease up a bit for you :confused:
 

RosettaT

Registered User
Sep 9, 2018
363
Mid Lincs
Yep, it never appears to let up, I sympathise, tbh if wasn't for a very good neighbour and her husband I couldn't have managed in the first few months OH came out of hospital. She picked up lots of little tasks I just never seemed to have time for. Bless her.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
I am sorry @canary that you are having such a rough time of it at the moment. One thing after another and it just builds from there and yet you still have time to keep posting support for others such as me. You are a special type of person so think of yourself a bit more before you run aground and try and get some time for yourself have some kind of treat if you can. You count too.

Sending you a hug
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Everyone is so lovely on here. I really appreciate the support @Donkeyshere @RosettaT and @Duggies-girl

I remember "gold top" milk when I was a child - it was a real treat, but now its semi-skimmed :rolleyes:
Ive been coming on here instead of doing things like washing up and cooking (weve been having an awful lot of ready meals and takeaways :oops:)
 

Juliematch

Registered User
Jun 24, 2017
129
So sorry your having such a busy time canary. It’s hard enough having to care for PWD, let alone doing all the chasing around after people who should be doing their job. Your respite must feel like it never happened.I agree with Duggies-girl , you always find time to give advice to all us fellow carers but you must try and pace yourself. I’m glad you’ve had a quieter day ( as quiet as a carer can) and hope this next week will be kinder for you. Take care.
 

Donkeyshere

Registered User
May 25, 2016
459
channel islands
Everyone is so lovely on here. I really appreciate the support @Donkeyshere @RosettaT and @Duggies-girl

I remember "gold top" milk when I was a child - it was a real treat, but now its semi-skimmed :rolleyes:
Ive been coming on here instead of doing things like washing up and cooking (weve been having an awful lot of ready meals and takeaways :oops:)
Ironically I actually prefer milk in the UK! It does not matter about ready meals and takeaways as long as you eat something - I will admit to ready meals for the MIL a couple of times in the week as its just easier - don't be hard on yourself for that - if it saves time and ease who the heck is going to care!
 

jugglingmum

Registered User
Jan 5, 2014
5,499
Chester
@canary sorry to hear it has been so difficult since OH came home from respite.

I'm hoping the London hospital visit means his meds might now be sorted.

I do think that joined up thinking would help everyone reduce wasted time and not forgetting it would save money. It took me an enormous effort to sort mum's meds out after she was sent for rehab in a care home 5 years ago and left me quite scarred (including the fact that I had to leave a 9 year old on his own for the first time every as no one could get their act together - and things only got sorted because I burst into tears when someone told me I had to now drive somewhere else - the 3rd or 4th place I had driven to).

I remember getting gold top as a treat as a child.

And in your situation nothing wrong with lots of ready meals.

Sending hugs
 

Splashing About

Registered User
Oct 20, 2019
373
There is a lot of talk about support for carers but I do wonder if a flag on your records would mean some sort of priority service...a bit like jump the queue at Alton Towers. I think carers could benefit from the equivalent in healthcare.
It would also be helpful for GPs, DNs, pharmacies, hospitals etc to experience the combined effect of all the obstacles such as automated ‘your call is important to us’ services.
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,781
Nottinghamshire
I’d forgotten how bad it was trying to find a minute for myself while I was caring for my dad until I read your rant @canary. It’s no wonder I lost all the hair above my ears (it’s growing back now - at least that haircut was quite trendy at the time :rolleyes:)

I hope you get your car back soon and the washing machine survives.

we had lots of takeaways too at the time. I’m still wearing some of them :(
 

annielou

Registered User
Sep 27, 2019
481
Yorkshire
Blooming nora I'm shattered just reading that. I really hope things get sorted soon and give you and your phone a bit of a rest. x
Where do people think we find the time to keep answering/making phone calls!?!? And why after all these phone calls do things still go wrong or people turn up not knowing the history even though you have told 3 seperate people on 3 seperate calls.
When sis rang to arrange mums reassessment with SS they asked why and what happening etc. Then a woman rang a few days later to put some details on form for reassessment and asked me same questions sis had answered. Then when SW was coming out she rang to arrange appointment and asked same questions which I missed so sis rang her instead. The second call they did ask if we were ok to talk when she first rang as it says on file that I sometimes find it hard to talk as mum doesn't like me talking on phone and gets aggressive. :rolleyes: What would have been more helpful is for them to read notes with answers already given and not ring as much.
I get what you mean about the phone menus they are such a pain, our ss has a recorded message about going online first then the menu, it takes a couple of minutes before you're even in the queue with the elevator music playing, by which time mum has usually come to see what I'm doing and if they answer the phone at the same time she's there I can't tell what either is saying. The gps is same, it has an added menu recently with a man telling you about automated booking and then it rings again and then the actual surgery menu comes on. Sometimes though it cuts you off before connecting you to actual surgery so you have to ring back again. It drives me mad:mad:
I get why places have these sort of menus but sometimes its hard to pick an option and it slows you down and gets you worked up before you even start.
I hope the fence the car and the shower are all fixable quickly and cheaply and all the medical and care issues get sorted with much less calls, bother and quickly. You must be shattered.
(X) virtual hug x
 

canary

Registered User
Feb 25, 2014
11,300
South coast
I havent got time to reply to everyone now, but do consider yourself all thanked - it is so encouraging to come down in the morning feeling somewhat jet-lagged (even though Ive not been anywhere) and find a load of supportive messages

Yes @annielou I am indeed shattered, and the multiple phone calls, menus and elevator music really get my goat.
Yes @jugglingmum I now do indeed have a plan for increasing his medication. Ive already started implementing it and we have got another appointment in a few weeks to see how he is getting on (must book the transport). Its already cut down the seizure rate from about 12 - 20 a day to 6 - 10 (although he did have a bad weekend with a lot more big ones and spent most of the time in bed - at least it gave me a break!). The appointment with the neurologist at the local hospital was also very productive. She was visibly appalled at the reduction in his medication (said it was "very dangerous), went through his hospital records with a fine toothed comb and found where it had happened. She said she would write to the consultant. I reckon the very words will sizzle on the page!!!

OK, must get going - the phone is beckoning
 

Pete1

Registered User
Jul 16, 2019
473
So today Ive crashed
Hi @canary, I'm not surprised, on some days like that (the constant ringing round to various agencies and having the same conversations and frustrations) I used to wish some else could step in when the mental exhaustion hits home. Unless you've been there it is really difficult to explain how exhausting it is - it's the relentless nature of it all and the constant 'problem solving', just when you are on a seemingly even keel something else lands on your lap to deal with. I hope you are feeling a bit better today - all I can say is that I do have some understanding. Stay strong, all the best.