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Another call tonight

Wildflowerlady

Registered User
Sep 30, 2019
288
0
I received another call tonight from Carer ( Friday ) as dad wouldn't take his bedtime medication or go to bed apparently he told her he needed a ambulance and was waiting for one to arrive.
I know fellow forum followers are saying I should withdraw as it will help to accelerate dad getting the help he needs as in 24/7 care but its so difficult and I suppose I viewed the call tonight as more important than dad perhaps refusing his lunch or afternoon tea.
I told carer to just leave dad and lock up and I would go to him to assist him to bed. I just wanted to get dad to his bed tonight and try and deal with the rest tomorrow.
Dad had been found sitting in the dark in his lounge on bedtime carers arrival.

As some of you are aware dads mixed dementia has got worse carers are struggling and Crisis Team were called in recently but to be honest I'm very disappointed with their response.
Having put dad on Risperidone it was removed after a few days due to dad becoming shaky and a bit unstable on his feet complaining of pains in his legs etc. Its now been agreed dad will not be going back on it.
I was told Crisis Team were going to see how dads Carers were dealing with him but this would only be for 2-3 of their visits. On the first visit they arranged they turned up after the carer had actually left. Next visit I was at dads home as had been visiting him when his GP called the house and asked if he could come straight away to see dad and give him his flu injection so I was still there when dads carer arrived which I hadn't intended to be. The Crisis lady literally turned up seconds after dads GP left and as the carer was there for afternoon call and GP had already done dads blood pressure etc she decided against coming in so as not to agitate dad any further.
GP was expecting me to stay to let him in and obviously convey how he felt dad was otherwise I would have left the carer to see to dad as we have been advised to. The GP was concerned about dad stability and stairs.

My sister emailed this afternoon dad had got angry with the lunch carer shouted at her and she had to leave so sister having received a call from Care Company Office said she would go round and do him some lunch. I know it sounds hypocritical in light of my going tonight to ensure he got to bed but I do disagree with sister doing this as I feel this is delaying dad getting a placement in Residential Care.

The lady from Crisis Team had called sister today ( Friday ) and said she had been in to see dad on Thursday afternoon after his lunch lady had been and said dad seemed quite happy, she had asked dad how he found his carers and he had said they needed to be more respectful to him but hadn't explained what he meant. Lady asked my sister what she felt he might have meant and sister says dad doesn't like the personnel care she then asked if dad was perhaps offered a towel in order to cover himself a bit but dad does wear pads and soils himself regularly as he has no bowel control at all and does wear a catheter which does entail emptying and additional night bag removing every morning. I can imagine if dad was asked to hold a towel to cover his modesty it would make their job more difficult and probably give him something to aim at them when he's agitated and aggressive. Dad won't bath or shower. I know the carers are probably a bit mixed in how they deal with dad but don't believe any are unkind.
It seemed to me that some blame is being aimed at dads carers and Crisis Team lady has suggested we contact the Care Company and speak to them about how the carers are dealing with dad perhaps query how they greet him on arrival etc and if they can draw up a chart for the carers to see if there is a pattern to dads moods/behaviour.
I think its obvious there is a pattern already mornings is a struggle for carers as it involves his washing and dressing, lunch is becoming a struggle as dad most days refuses lunch which in turn means he's refusing catheter being emptied and pad check and then gets angry because he gets fed up 'everyone wanting to feed him' by afternoon he's hungry but thinks its breakfast time but they offer either a sandwich or tea and cake as meals offered in the past at that time were refused. By late afternoon dad is now starting to want to go to bed thinking its bedtime and no one is there to put him to bed. I know this will get worse as the night draws in.
Dad has been being monitored for some time by Care Company so quite honestly I believe the Care Company as does sister are reaching the end of the line for providing their care to dad and are awaiting as we are for someone to override dads wish to stay in his own home.
According to Crisis Team dad still has capacity to refuse Respite or Residential care.

On my arrival at dads around 9.45 pm he was in his lounge carer had put a light on he was a bit agitated saying he has had a Heart Attack ( says it frequently now ) and is waiting for an ambulance. I managed to reassure dad a bit and he took his medication it was just a Simvastin at bedtime. I helped dad upstairs changed pad which fortunately wasn't too bad emptied his day catheter bag and helped him into Pjs dad won't brush his teeth at night. I attached the night bag and put his CD on with headphones whilst I tidied his clothes. Dad drank a full beaker of water which initially was always in the room should he get thirsty at night but dad believes he has to drink the lot now. Dad said I had done everything perfectly forgetting that I had in the past been going in every other morning so was familiar with the catheter.
I will ring the Crisis Team in morning to update them as sister says that their part in dads care comes to a end after the weekend.
Sister was told they will be in touch with ASC on Monday and we should get a call from them regarding next course of action.
I know its been indicated by Care Company and ASC that everything available has to be tried first given dads reluctance to go into a CH and the fact that in their opinion dad still has capacity to say no is not making things easy.
 
Last edited:

Hayley JS

Registered User
Feb 20, 2020
207
0
Hi @Wildflowerlady, I've been following your thread and empathise with your current situation. I was wondering, if you (and your sister) didn't respond to the carers call last night, what would have happened?
 

Sarasa

Registered User
Apr 13, 2018
2,069
0
Perhaps you need to speak to the care agency and come up with a plan for when your father refuses care. You'll never be able to step back and be his daughter if they assume you (or your sister) will sort out problems when he refuses. What would you have done if your partner also needed help at the same time?
It sounds mean and tough, but maybe next time ask them to call 111? I'm sure other people will have other suggestions, but with you propping things up he'll never get the care he really needs.
 

jennifer1967

Registered User
Mar 15, 2020
1,312
0
Southampton
i actually agree but we have spoken a lot and in great detail so i know how hard its been for you to step back and understand your reluctance. maybe need to wean yourself off rather than stop altogether. maybe answer alternative ones so they get an idea of the problems and his needs but you dont feel you have abandoned him completely which is your greatest fear. i hope your sister has been more helpful. alternate days can i suggest you super glue your feet to your house floor and stay stuck and if that doesnt work super glue your bottom to a chair or any other part of your anatomy to a part of your house whatever works for you and stay there.they will sort his needs and take appropriate action leaving you alone as you cant get out of the house because you are stuck.super glues fault so out of your control so cant feel guilty. im not making light of it but deflecting the guilt to super glue as you have enough guilt already and trying to releasing some of it. please try and please look after yourself. YOU are a very important person.just need to believe it jenny
 

Wildflowerlady

Registered User
Sep 30, 2019
288
0
Hi @Wildflowerlady, I've been following your thread and empathise with your current situation. I was wondering, if you (and your sister) didn't respond to the carers call last night, what would have happened?
Hi @Haley JS
I don't actually know the answer to your question but it is something I will be asking on Monday. I did try to contact Care Company on Saturday morning and later in day but just got diverted to answer machine so decided I will speak to them on Monday. I did see one of dads carers yesterday briefly and she didn't know the answer herself. Dad has been quite muddled over the last few days.
 

Wildflowerlady

Registered User
Sep 30, 2019
288
0
i actually agree but we have spoken a lot and in great detail so i know how hard its been for you to step back and understand your reluctance. maybe need to wean yourself off rather than stop altogether. maybe answer alternative ones so they get an idea of the problems and his needs but you dont feel you have abandoned him completely which is your greatest fear. i hope your sister has been more helpful. alternate days can i suggest you super glue your feet to your house floor and stay stuck and if that doesnt work super glue your bottom to a chair or any other part of your anatomy to a part of your house whatever works for you and stay there.they will sort his needs and take appropriate action leaving you alone as you cant get out of the house because you are stuck.super glues fault so out of your control so cant feel guilty. im not making light of it but deflecting the guilt to super glue as you have enough guilt already and trying to releasing some of it. please try and please look after yourself. YOU are a very important person.just need to believe it jenny
Hi @jennifer1967
Yes its hard I am really trying to step back and in truth don't know what would have happened had I not gone over to dad to put him to bed. It is something I will be asking Care Company tomorrow.
As it is no need to super glue myself today as I've struggled with my back perhaps getting partner out of shower/lifting my dogs food delivery has set something off.
I haven't been to dad today just called him.
Sister has been unusually co-operative this past week and we have been able to communicate. Dad hasn't been great, sister said in email he shouted at morning carer today. I know dad didn't have lunch again yesterday as he told me when I visited and yet again he said he had spaghetti bolognaise but he hadn't.
Sister has sent me a link to an article in Daily Mail reporting on CH's and the effects of lockdown so doesn't help when you feel dad needs to be admitted to one for Respite or Permanent care. In fact article makes me feel bad for trying to push ASC into getting dad a placement although unless he agrees not sure how long it will take anyway.
I can't see much changing anytime soon regarding the Covid 19 situation but am hopeful that CH's may be able to implement safe visiting for relatives so that they can see their loved ones again. Dad is constantly saying he's waiting for carer and bedtime he was arguing with carer this morning saying he wanted to put his PJ's back on.
Thank you Jenny for posting, take care thinking of you and your kindness..
I need to catch up on what everyone else is posting as not been looking much this week will try have a look at posts tomorrow..
 

Wildflowerlady

Registered User
Sep 30, 2019
288
0
Perhaps you need to speak to the care agency and come up with a plan for when your father refuses care. You'll never be able to step back and be his daughter if they assume you (or your sister) will sort out problems when he refuses. What would you have done if your partner also needed help at the same time?
It sounds mean and tough, but maybe next time ask them to call 111? I'm sure other people will have other suggestions, but with you propping things up he'll never get the care he really needs.
Hi @Sarasa
I will be speaking to Care Company tomorrow I think report from Crisis Team will be going to ASC tomorrow regarding their opinion of dad and care he receiving at home, sister says she was told ASC will be in contact with what happens next ( if anything ? ). I'm not confident111 would be much help sister called them last week after Crisis Team advised her to as carer reported dad was unsteady and basically after loads of questions she got told to call his GP. Dads GP did visit was concerned and removed his blood pressure pill that he's been taking for donkeys years.
My partner came with me to dads and sat in car in his PJ's slippers and dressing gown whilst I went into dad. Partner had his phone that has a SOS button that quickly calls me and given he just sat there hopefully would be ok but obviously its not ideal.
My partner gets a bit nervous me going to dad at night I think he worries that I'm vulnerable being on my own when its dark.
 

jennifer1967

Registered User
Mar 15, 2020
1,312
0
Southampton
Hi @jennifer1967
Yes its hard I am really trying to step back and in truth don't know what would have happened had I not gone over to dad to put him to bed. It is something I will be asking Care Company tomorrow.
As it is no need to super glue myself today as I've struggled with my back perhaps getting partner out of shower/lifting my dogs food delivery has set something off.
I haven't been to dad today just called him.
Sister has been unusually co-operative this past week and we have been able to communicate. Dad hasn't been great, sister said in email he shouted at morning carer today. I know dad didn't have lunch again yesterday as he told me when I visited and yet again he said he had spaghetti bolognaise but he hadn't.
Sister has sent me a link to an article in Daily Mail reporting on CH's and the effects of lockdown so doesn't help when you feel dad needs to be admitted to one for Respite or Permanent care. In fact article makes me feel bad for trying to push ASC into getting dad a placement although unless he agrees not sure how long it will take anyway.
I can't see much changing anytime soon regarding the Covid 19 situation but am hopeful that CH's may be able to implement safe visiting for relatives so that they can see their loved ones again. Dad is constantly saying he's waiting for carer and bedtime he was arguing with carer this morning saying he wanted to put his PJ's back on.
Thank you Jenny for posting, take care thinking of you and your kindness..
I need to catch up on what everyone else is posting as not been looking much this week will try have a look at posts tomorrow..
hey dont need to reply to my posts if not able. i wondered if i had gone to far with the super glue but you obviously got the message. watch your back please. i think most carers get bad backs by what you have to do. im pretty immobile with my sciatic nerve being irritated by my degenerative spine. if you dont, caring for either is going to be very difficult. can i ask a question? no need to answer but what i posted before this one,you know what i mean, was it too much? please slowly back off a little bit by bit when you feel able, take care
 

Wildflowerlady

Registered User
Sep 30, 2019
288
0
hey dont need to reply to my posts if not able. i wondered if i had gone to far with the super glue but you obviously got the message. watch your back please. i think most carers get bad backs by what you have to do. im pretty immobile with my sciatic nerve being irritated by my degenerative spine. if you dont, caring for either is going to be very difficult. can i ask a question? no need to answer but what i posted before this one,you know what i mean, was it too much? please slowly back off a little bit by bit when you feel able, take care
Hi @jennifer1967
No not too much at all Jenny its so good to express feelings and thoughts and good that you felt able to so please, please don't worry about anything you have said now or choose to in future. I am someone that is very open and am not prejudice towards anyone. I admire your honesty and strength to make something good in your life you certainly deserve any happiness you have managed to get.
We both have similar back issues mine is sciatica wearing of discs, much older partners ( I have been mistaken for his daughter). I was near 40 yrs when my partner and I got together but even then I know that some people thought him a bit old for me. I am detached from some family too obviously my sister but this has affected relationship with my niece and Great Nephews too so we have a bit of understanding for each other. The 'Super Glue' idea actually made me laugh out loud 🤣🤣🤣 Thank you Thank you.
Ps: I love chatting to you just hope I don't say anything to upset you 🤗