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Dad has refused respite care

Wildflowerlady

Registered User
Sep 30, 2019
263
So Crisis Team lady came out today to see how dad was doing on Risperidone to have a chat with him generally and also approach dad with the idea of Respite Care. Sister was with dad and emailed me tonight to inform me of what was said. Sister didn't request I go to dads home as well plus I was having a washing machine delivered as my machine broke last week.
Sister emailed that the lady chatted to dad quite a bit he said his mum and dad had visited so she asked him where they had stayed he said at his house and sister had made them tea obviously none of this was true as they have been gone many, many years. Dad is talking about his mum and dad a lot just lately saying he wants to live with them told me tonight he was going to go to the shop as he wanted a post card to write to them but he wasn't sure which way the shop was. I said I would find him a card and take it to him tomorrow and I would post it on my way home telling him its not safe to go to the shop because of the virus. Dad has some understanding of its existence but says he's not worried about it. This afternoon he told me his GP had called him a couple of days ago and said he was going to have a heart attack so to live his life now as he wanted said GP said a heart attack was imminent but of course the GP has not rang dad.
Dad was asked if he knew what respite meant he apparently said yes but when explained to him fully using the term respite in a CH he said no he didn't want to go for a break as he liked his own home. Sister said the lady felt that as dad didn't want respite and that he came across as quite sociable and she felt he was of a mind that he could decide himself that he can't actually be forced into going into respite. It was even suggested it would also give his daughters a little holiday too to which dad still said no to as he didn't want to go anywhere.
We don't have a Health and Welfare POA but sister said even if we did she didn't feel she could force dad into respite either if he clearly doesn't want to go. Apparently it was suggested that we could get some brochures for a couple of CH and perhaps browse through them with dad but quite honestly I don't think he would want to even look through them and more than likely get angry.
Sister says she asked lady if dads Care Company could no longer offer dad care where do we go from here and her answer was repeated 'That as dad does understand what Respite Care and CH were then they couldn't force him' and on top of that he is saying he wants to remain in his own home.
Care Company said three weeks ago they don't feel they can continue with dads care they had contacted ASC and told them this.
My sister and I are both going in twice a day now as dad has 4 x care visits this is when the carers go in because they are finding dad so difficult to cope with. Care Company have requested we do this assuming this was until dad had some respite care and hopefully a permanent CH place. The carers can't always give him the care he needs because he gets so abusive. Dad is often refusing catheter draining. pad changes and quite often refusal of his lunch a WF meal that they heat up in microwave.
Its now been suggested by this lady from The Crisis Team that perhaps an adaption can be made to dads bathroom to aid carers with his personnel care and he could have a chair to sit on as dad has refused a bath or shower for over 3 years. Personally I think its ridiculous I can't see him suddenly letting a carer in his own home shower or bath him.
Another idea she has come out with is that they could possibly offer some temporary support to dads carers perhaps on his morning call but this would literally be just 2 or 3 visits and they could offer his carers some guidance as to how to approach his care. Sister thinks some of dads current carers would not be happy as would actually rather not do the personal care checks because of the verbal abuse that dad would give them.
Sister says the Care Company actually rang her later in the day and she told them what had been said during this visit apparently the Care Company have never heard of the suggestion that their carers be supported in this manner before.
Care Company reiterated to sister dads aggression towards his carers and that is why they can't continue to offer their care services to dad.
ASC suggestion last week that carers double up had been rejected as they didn't feel it would help.
Sister said to Care Company that she felt she could defuse what could be a refusal of his care or aggressive outbursts and that her being there same time as carer had been of benefit to dads carers but she also thought that dad would benefit from less mixed carers going in and be better if dad had more of the same carers.
Sister is making the assumption they might look into antidepressants for dad as she feels dad is also depressed although he said no he wasn't to the lady. Sister wasn't sure they could put dad on antidepressants without his permission but I don't believe he was asked or told about being put on a antipsychotic drug Risperidone.
The lady said she will be in touch with ASC and dads Care Company soon so sister believes they will be back in contact with her in a couple of days.
I haven't replied to sisters email tonight as she goes to bed around 10pm and I have been to dads for his bedtime carer call at 9pm plus I need to digest everything.
The one thing neither my sister or this lady from Crisis Team don't seem to have factored in is me my thoughts and what support I can continue to offer.
I thought I had made it abundantly clear to everyone that I would go in temporarily to help with carer support so that sister did not have to go to dads 4 x daily but this was because everyone including sister had said this was for around 2-3 weeks until Respite Care had been arranged. I honestly thought when dad had Respite Care dad would be found a permanent residential place as they would see how much care he really needs.
I guess I know now what my sister is thinking it seems she wants to continue with things as they are for as long as possible she had said earlier this week that if dad came home from Respite Care the agreement between her and I to go in twice a day each to support carers would have to continue until dad was given a permanent placement in a CH . I just cannot do this my partner needs me I am his carer because of his Parkinson's and advancing age 77 years.

To me it seems utterly ridiculous that a Care Company want to withdraw their services to dad because they cannot provide him with the care he needs and all Crisis Team want to do is accept he can stay in his home because he says he wants to and shove a new or adapted bathroom in.
I told my sister in an email on Tuesday before this lady from the Crisis Team came that if we continue to agree to go into dad to support the carers its possible nothing further will be done.
It looks like sister is set to carry on but she clearly won't cope for long without my support 4 visits a day is too much even for her and she lives a short walk from dad. I can't keep going over to dads like this for long its already putting me under enormous pressure and I know before long I will be mentally unwell as I was last year when Partner's Parkinson's got worse and going to dad every day started to become too much. I was distraught at times trying to cope I just don't know how sister does it but I know I can't and it makes me feel I'm failing my dad.
My only hope is that someone else will look at this lady's report take dads care needs into account and the Care Company's view that they cannot provide care for dad any longer.
I'm not aware that the Care Company have given ASC any notice of when they will cease going into dad or even if they can when nothing much else is in place.
The highlight of my day was I managed to disconnect my old washing machine this morning all by myself and put the new one in its place and connect it. Fingers crossed tomorrow it doesn't leak when I turn its water supply on for its first wash.
 
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jennifer1967

Registered User
Mar 15, 2020
1,227
Southampton
So Crisis Team lady came out today to see how dad was doing on Risperidone to have a chat with him generally and also approach dad with the idea of Respite Care. Sister was with dad and emailed me tonight to inform me of what was said. Sister didn't request I go to dads home as well plus I was having a washing machine delivered as my machine broke last week.
Sister emailed that the lady chatted to dad quite a bit he said his mum and dad had visited so she asked him where they had stayed he said at his house and sister had made them tea obviously none of this was true as they have been gone many, many years. Dad is talking about his mum and dad a lot just lately saying he wants to live with them told me tonight he was going to go to the shop as he wanted a post card to write to them but he wasn't sure which way the shop was. I said I would find him a card and take it to him tomorrow and I would post it on my way home telling him its not safe to go to the shop because of the virus. Dad has some understanding of its existence but says he's not worried about it. This afternoon he told me his GP had called him a couple of days ago and said he was going to have a heart attack so to live his life now as he wanted said GP said a heart attack was imminent but of course the GP has not rang dad.
Dad was asked if he knew what respite meant he apparently said yes but when explained to him fully using the term respite in a CH he said no he didn't want to go for a break as he liked his own home. Sister said the lady felt that as dad didn't want respite and that he came across as quite sociable and she felt he was of a mind that he could decide himself that he can't actually be forced into going into respite. It was even suggested it would also give his daughters a little holiday too to which dad still said no to as he didn't want to go anywhere.
We don't have a Health and Welfare POA but sister said even if we did she didn't feel she could force dad into respite either if he clearly doesn't want to go. Apparently it was suggested that we could get some brochures for a couple of CH and perhaps browse through them with dad but quite honestly I don't think he would want to even look through them and more than likely get angry.
Sister says she asked lady if dads Care Company could no longer offer dad care where do we go from here and her answer was repeated 'That as dad does understand what Respite Care and CH were then they couldn't force him' and on top of that he is saying he wants to remain in his own home.
Care Company said three weeks ago they don't feel they can continue with dads care they had contacted ASC and told them this.
My sister and I are both going in twice a day now as dad has 4 x care visits this is when the carers go in because they are finding dad so difficult to cope with. Care Company have requested we do this assuming this was until dad had some respite care and hopefully a permanent CH place. The carers can't always give him the care he needs because he gets so abusive. Dad is often refusing catheter draining. pad changes and quite often refusal of his lunch a WF meal that they heat up in microwave.
Its now been suggested by this lady from The Crisis Team that perhaps an adaption can be made to dads bathroom to aid carers with his personnel care and he could have a chair to sit on as dad has refused a bath or shower for over 3 years. Personally I think its ridiculous I can't see him suddenly letting a carer in his own home shower or bath him.
Another idea she has come out with is that they could possibly offer some temporary support to dads carers perhaps on his morning call but this would literally be just 2 or 3 visits and they could offer his carers some guidance as to how to approach his care. Sister thinks some of dads current carers would not be happy as would actually rather not do the personal care checks because of the verbal abuse that dad would give them.
Sister says the Care Company actually rang her later in the day and she told them what had been said during this visit apparently the Care Company have never heard of the suggestion that their carers be supported in this manner before.
Care Company reiterated to sister dads aggression towards his carers and that is why they can't continue to offer their care services to dad.
ASC suggestion last week that carers double up had been rejected as they didn't feel it would help.
Sister said to Care Company that she felt she could defuse what could be a refusal of his care or aggressive outbursts and that her being there same time as carer had been of benefit to dads carers but she also thought that dad would benefit from less mixed carers going in and be better if dad had more of the same carers.
Sister is making the assumption they might look into antidepressants for dad as she feels dad is also depressed although he said no he wasn't to the lady. Sister wasn't sure they could put dad on antidepressants without his permission but I don't believe he was asked or told about being put on a antipsychotic drug Risperidone.
The lady said she will be in touch with ASC and dads Care Company soon so sister believes they will be back in contact with her in a couple of days.
I haven't replied to sisters email tonight as she goes to bed around 10pm and I have been to dads for his bedtime carer call at 9pm plus I need to digest everything.
The one thing neither my sister or this lady from Crisis Team don't seem to have factored in is me my thoughts and what support I can continue to offer.
I thought I had made it abundantly clear to everyone that I would go in temporarily to help with carer support so that sister did not have to go to dads 4 x daily but this was because everyone including sister had said this was for around 2-3 weeks until Respite Care had been arranged. I honestly thought when dad had Respite Care dad would be found a permanent residential place as they would see how much care he really needs.
I guess I know now what my sister is thinking it seems she wants to continue with things as they are for as long as possible she had said earlier this week that if dad came home from Respite Care the agreement between her and I to go in twice a day each to support carers would have to continue until dad was given a permanent placement in a CH . I just cannot do this my partner needs me I am his carer because of his Parkinson's and advancing age 77 years.

To me it seems utterly ridiculous that a Care Company want to withdraw their services to dad because they cannot provide him with the care he needs and all Crisis Team want to do is accept he can stay in his home because he says he wants to and shove a new or adapted bathroom in.
I told my sister in an email on Tuesday before this lady from the Crisis Team came that if we continue to agree to go into dad to support the carers its possible nothing further will be done.
It looks like sister is set to carry on but she clearly won't cope for long without my support 4 visits a day is too much even for her and she lives a short walk from dad. I can't keep going over to dads like this for long its already putting me under enormous pressure and I know before long I will be mentally unwell as I was last year when Partner's Parkinson's got worse and going to dad every day started to become too much. I was distraught at times trying to cope I just don't know how sister does it but I know I can't and it makes me feel I'm failing my dad.
My only hope is that someone else will look at this lady's report take dads care needs into account and the Care Company's view that they cannot provide care for dad any longer.
I'm not aware that the Care Company have given ASC any notice of when they will cease going into dad or even if they can when nothing much else is in place.
The highlight of my day was I managed to disconnect my old washing machine this morning all by myself and put the new one in its place and connect it. Fingers crossed tomorrow it doesn't leak when I turn its water supply on for its first wash.
oh dear. if and you should withdraw your care and the carers refuse point blank to come in, your sister would have to do it or the crisis team would have to put into place care for your dad. most dementia sufferers will say no to respite as they dont see anything wrong and at some point very soon he is going to be cared for by them. they have a duty of care to your dad. you have a duty of care to YOURSELF as well as caring for your husband. when he does go in because he will you will need to do a few love lies saying its an hotel or something and not tell him hes going in but just take him there when the time comes. you are not failing your dad, in my opinion i think its your sister thats doing that to you for not recognising your needs and your husbands as well as being complacent to your dads needs. did she force the issue with the lady? did she explain the consequences of him not having respite care for you and also for your dad. there can be a best interests meeting to take into account his best interests of providing care. other than that im out of suggestions but you cant continue to provide the care for both you dad and husband and something has to give before you give out and collapse leaving your husband no-one to care for him as well. keep going and assert yourself although it will be very hard and you will feel unjustified guilt jenny
 

Weasell

Registered User
Oct 21, 2019
749
The Crisis Team lady did not deal with it because there is no crisis.

Two very lovely daughters are taking up the slack!

What you need to do is book a weeks holiday in Bournemouth for both sisters, and tell the crisis team you both withdrew support from Monday 21st September.
The only problem with this idea is you won’t do it!

It needs to fail, you know it needs to fail!

Maybe you should book hypnosis’s for both sisters to rid yourselves of those emotions That are making slaves Of you both, duty, responsibility, care and love !

Well done for maintaining the relationship with your sister. So many flounder when there is such extreme stress.

Hopefully someone will come along with some less extreme compromise ideas?
Wishing you well! Hope it ‘all comes out in the wash’!
 

Starting on a journey

Registered User
Jul 9, 2019
491
Possibly all you can do is give ASC, the care company and your sister seven days notice that you can no longer support the care visits. And then stick to it.
It doesn’t mean you won’t see your dad you will still do any shopping or the odd emergency but you won’t have the daily grind of care. As you say without your support.....
I do not understand a system where people have to experience danger before they are forced into 24 hour care. How can someone who wants to live with his long deceased parents be judged fit to know what he wants?
It is a national scandal
 

Weasell

Registered User
Oct 21, 2019
749
I random idea that may just annoy you, in which case I apologise.
Print 5 pages of the signature sheets to both the Power of Attorney forms.
( so when someone make a mistake you have immediate back up.)
Dont worry about any other part of the power of attorny. Just the signature sheet.

The crisis lady has decided he has capacity!
Take two old friends who know your dad, or use a friendly neighbour?
One to sign as proposing the POA to him and another witnessing.

Explain to dad if he wishes to stay in his own house he needs to sign the forms for you to be able to support him.
If you can do it quickly enough after her visit I am thinking ‘ white coat’ syndrome may come into play? and he might just sign?

I would not be adding to you tasks and problems without vey good reason. There are times no POA can really cause difficulties.
 

Sarasa

Registered User
Apr 13, 2018
2,006
@Wildflowerlady , I'm so sorry that the person from the crisis team didn't see what is staring you, the care company and everyone here in the face, that your dad is not safe at home.
I think the key here is your sister. i think she wants to keep your dad at home for as long as possible and doesn't recognise that even if you were able to visit twice a day for the foreseeable future and the care company would carry on, it just isn't possible. I wonder if she gave the impression that you were all managing?
Stick to your guns and give notice that you can't continue to do it. Is there anyway you can contact the crisis team and give them your view. I'm sure your dad came across as confused but amenable at the meeting which is why the woman thought things could carry on. Are they aware about the knife incident?
Stay strong!
 

maryjoan

Registered User
Mar 25, 2017
1,514
South of the Border
I am seeing this as similar to my own problems - carers totally overwhelmed, unvalued and unhappy.... I was just looking at booking myself into a Premier Inn for a week, walking out, and leaving him to it......
 

canary

Registered User
Feb 25, 2014
13,897
South coast
The trouble with agreeing to care is that once you have agreed it is very difficult to get out of it.
I know you only agreed to this as a temporary solution, but unfortunately, the powers that be tend to view it as permanent and if (in their view) its working, leave you to carry on.

I think its going to take another crisis. You can provoke one by giving notice to withdraw care, or you can wait for one to happen - like you or your husbands health, or another crisis with your dad. When that happens do not agree to any care that you could not sustain on a permanent arrangement (and if that means not giving him any care at all, thats fine) and stick to it.

Your sister has no idea about your own problems and the way you are being torn two ways. Im sure that @Sarasa is right and she is desperately trying to keep your dad at home.
 

Wildflowerlady

Registered User
Sep 30, 2019
263
@Wildflowerlady , I'm so sorry that the person from the crisis team didn't see what is staring you, the care company and everyone here in the face, that your dad is not safe at home.
I think the key here is your sister. i think she wants to keep your dad at home for as long as possible and doesn't recognise that even if you were able to visit twice a day for the foreseeable future and the care company would carry on, it just isn't possible. I wonder if she gave the impression that you were all managing?
Stick to your guns and give notice that you can't continue to do it. Is there anyway you can contact the crisis team and give them your view. I'm sure your dad came across as confused but amenable at the meeting which is why the woman thought things could carry on. Are they aware about the knife incident?
Stay strong!
Hi @Sarasa
Yes everyone is aware of the knife incident and the raising of a heavy glass bowl. I have emailed dads care company manager this morning to ask if they are fully aware of the proposals that this lady from Crisis Team has made. I know my sister spoke after the meeting at dads home with the lady that usually answers the phone at care company and arranges the weekly schedule she quite often corresponds with her on general matters.
I have asked if they will be able to give a date on which they will be withdrawing dads care have explained that my offer to go into dad was on the understanding it was temporary as I believed that once in Respite Care dad would be offered a permanent place. Ive said I had no doubt my sister will continue to support the carers but I cannot much longer. I made it clear I do not agree with what has been proposed and that dad needs 24/7 care even if he does not recognise this fact himself. I have asked for her opinion again which I know 3 weeks ago was that in her opinion dad did need Residential Care and if there is anything further they can do to help. Last time I emailed 3 weeks ago she did say that we both needed to tell ASC that we were unable to continue dads care at home but you are right my sister is the key in all this and at the moment she says she doesn't feel she can force dad into accepting Respite or a permanent CH placement.
 

Wildflowerlady

Registered User
Sep 30, 2019
263
Thank you everyone, I know what everyone is saying is right the sticking point where support for dad going into Respite and Permanent 24/7 care is most likely my sisters reluctance to admit defeat in being able to care for dad at home. I came to the conclusion a year ago that I could not continue with my daily visits but here I am now going into dad twice a day. I will have to withdraw give a date and just learn to live with my decision my sister will never be my friend her recent emails have only been more respectful as she wants me to comply with her demands. It was only a week ago she was screaming at meet telling me 'I will I will' meaning 'you will you will'. I am now awaiting a call or email back from Care Company Manager.
 
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Wildflowerlady

Registered User
Sep 30, 2019
263
I am seeing this as similar to my own problems - carers totally overwhelmed, unvalued and unhappy.... I was just looking at booking myself into a Premier Inn for a week, walking out, and leaving him to it......
Hi @maryjoan I know how you feel although my partner needs a lot of help because of his Parkinson's it was the situation with going into my dad every day last year and partners accelerating needs that affected me too. I had started to feel so low I had on occasion wanted to walk out in the middle of the night to get away from everything even harm myself it was thoughts of my dear daughter and how devastated she would be that stopped me. I don't want to get that low again but can feel a cloud coming over me. I am trying to be strong in the hope that this situation will have some resolution soon. I'm so very sorry you feel this way, do whatever you can/need to and get the rest you so clearly need.
 

jennifer1967

Registered User
Mar 15, 2020
1,227
Southampton
Hi @maryjoan I know how you feel although my partner needs a lot of help because of his Parkinson's it was the situation with going into my dad every day last year and partners accelerating needs that affected me too. I had started to feel so low I had on occasion wanted to walk out in the middle of the night to get away from everything even harm myself it was thoughts of my dear daughter and how devastated she would be that stopped me. I don't want to get that low again but can feel a cloud coming over me. I am trying to be strong in the hope that this situation will have some resolution soon. I'm so very sorry you feel this way, do whatever you can/need to and get the rest you so clearly need.
hi you are doing the right thing for your dad and for your husband and please stick to it for your own health. you wont able to care for your husband if you dont care properly for your self. and i admire you for sticking to your guns you doing the right thing.
 

Starting on a journey

Registered User
Jul 9, 2019
491
Well done!!
Put yourself first or you won’t be able to help anyone. I should imagine that the care Company are carefully considering their position.
 

anxious annie

Registered User
Jan 2, 2019
590
Hi @Wildflowerlady
As hard as it will be you really do need to put your husbands needs and your own before your dads and just tell/email your sister saying you will continue to visit your dad, and be there for him as a daughter, not a carer. You are unable to help in a caring role as you have your husband to look after and caring for dad is taking too much of a toll on your health too. Once you have let SW know this too , it will be up to your sister and SS to see if care at home is still an option. Good luck, and stay strong.
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Sorry to read your post and that the crisis lady coming got you no further forward. Its a dreadful situation you and your sister and your dad are in. 🤗 You must feel like one of those stretch armstrong toys being pulled in two directions for care needs too, never mind your own needs. Hopefully the care company will report to SS about the way your dad is with them and that they won't continue to provide care and that might carry some weight with SS.🤞
If your SS are anything like the ones round here nothing you or your sister said would make much difference. My mum didn't want to go into respite and I was told that although the SW thought mum needed permanent care she couldn't see them being able to get a court order to make mum go in a CH against her will so unless she agreed they couldn't do anything, we had to let a crisis happen and enough evidence build up to prove to a court that mum was unsafe to live alone. There had to be evidence of self neglect, like her skin breaking down from not been cleaned properly etc and then have evidence from nurse or someone that it was like that. Her losing lots of weight or being unwell because she wasn't eating properly or safely, though she said that could be got around by meals on wheels and carers so didn't hold much weight. Or evidence of self harm or danger such as if she injured herself because she was unsafe and there was evidence. Or if there was evidence she put herself and or others in danger, like if she set fire to house, was attacking neighbours, or wandering. I was told there would need to be multiple incidents before it's taken as serious risk and not just a one off.
SW said mum had fluctuating capacity so although she may make unwise decisions she had the capacity to make them and understand them enough at the time to make them so when mum said she didn't want to go into respite or have carers or meals and wheels they had to allow her to make that decision. This was despite the fact mum had told the SW I wasn't her daughter I was her friend, and when asked what mum was going to do if she didn't have carers and I didn't go everyday to help look after her mum said she would get our Andie (me) to come, she said I've got a daughter she can do it. I was sat next to her at the time but mum thought I was her friend as she did most of the time. How she could understand the consequences of a decision about her care when she thought she had someone else in the background I don' t know. When asked mum will say she doesn't need help and if she does then her daughter Andie or her mum will do it. She does not understand I am her daughter and her mum is dead so she doesn't understand there is no one else but me, yet she is deemed to have capacity to understand and make that decision. 🤷‍♀️
During the SW visit Mum told SW that she was going to go visit her mum later (who died 46 years ago) and when asked how she was getting there mum said she would walk she didn't know the way but it's up there she thought. SW asked mum do you think that's safe if you don't know the way, mum said I'll figure it out I'll know it when I see it. When asked how long it took mum said she couldn't remember she hadn't been from that house yet but she went all the time. She told SW her husband had just left her when in fact she threw him out 30 years ago now, he's been dead over 5 years and he'd never even set foot in the house she lives in. More or less every answer mum gave to the few question SW managed to ask her were either mixed up and only half right or completely wrong. Mum also got really angry and told both SW and me to leave when I said what mum really did in answer to one of SWs questions to me and she wouldn't let us talk privately. We had over half an hour of mum going mad at us both and telling us to leave and saying I was a liar and there is nothing wrong with her until SW admitted defeat and decided to leave. As I was showing SW to door mum came and tried to shove me out the front door and shut me out. The SW actually sat outside in her car for half an hour because she was worried about me and wanted to make sure mum didn't throw me out physically and yet she still had to say mum had fluctuating capacity to decide herself and there wasn't enough evidence to put mum in a CH against her will.
It's a tough system to deal with and heartbreaking and scary to cope with. I hope you get somewhere with your crisis lady and SS as you really can't carry on as things are and SS need to do something about it x
 

Wildflowerlady

Registered User
Sep 30, 2019
263
Hi @annielou
Its unbelievable that you and everyone else has to go through this in order to get the right care for our loved ones. Your poor mum so confused, I know how much you had done for her. I'm not strong enough mentally to do what you did for your mum you are a heroine in my book. There are so many special people on this site who are battling every day to do the best they can and I am so glad I joined it last year when I really was at my lowest point.
The SS round here are obviously the same I have told them how I feel said that I don't believe dad is safe I even said I didn't think anyone going into to dad is necessarily safe either especially given the latest incidents and numerous reports of aggression towards the carers going into him. I have terrible worries that dad will wander eventually, visions of him going out into a cold night to be found the next day just laying somewhere. Dad has a very large field behind him I keep thinking winter isn't far away what if he ends up on the field all night no one would know as he lives alone.
The latest update is Care Company manager called me she has reiterated that as dad was found to have capacity or at least enough to decide he doesn't want to have Respite did understand what a CH was they can't do anything to escalate things either.
The plan is that as from now they will send the carers in again without our support and hope that the new medication dad has been put on will help. Care Manager says that she is being totally upfront and realistically there is no reason that sister or I should ever have to visit our dad at times that they go in leaving us free to visit whenever we want as they should be able to provide dad with all his care needs. Care Manager said they need to start again providing his care package as if from the beginning.
I have had a similar discussion ether verbally or via messages with my sister many times over the past 14 months since my breakfast call to dad stopped. My sister decided that she would go into dad every morning to do his breakfast whereas we had done alternative mornings leaving the later arrival of carer to do his personnel care. I have always felt that sister could if she wished done dad the occasional breakfast it certainly didn't need to be every day but I got nothing but abuse thrown at me which greatly affected my well being and she constantly said it was my fault that her health and well being was compromised because I wasn't doing my share and letting her and dad down.
Care company are requesting my sister not to go in tomorrow morning as Jet Team will attend with the morning carer ( i'm not entirely sure but think Jet Team might be emergency care assistance ) Care company have said they are still not willing to double up on dads carers but will attempt to pick the carers they feel might cope better with him or ones he is more familiar with and see how the next few days go.
Unless there is an emergency the advice seems to be let them get on with the carer visits although she admitted they cannot really tell sister not to go in to do dad his breakfast and did say that dad can be calmer if she's there.
If sister continues with her breakfast call then she cannot continue to blame me for how she is feeling although I think she will. Sister should try and back off now and start visiting dad as his daughter and give herself a well earned break be it permanent or otherwise.
I went to see dad earlier today given visits will not be dictated to coincide with carer going in and he was just finishing his trifle as the carer must have been running a little late as I thought she would be gone. Dad had said he wanted Spaghetti Bolognese but having heated it up he decided he didn't want it after all.
Even the Care Company is saying sister and I need to step back and let them look after dad more otherwise its pointless them going in for his allocated four calls. I think sister will find this advice more difficult than I and that does make me feel a bit like a rotten daughter that doesn't appear to care but I do very much.
I just hope the crisis when it comes and I'm sure it will is just enough to get dad somewhere safe which is what I want.
 

canary

Registered User
Feb 25, 2014
13,897
South coast
Listen to what the care agency manager is saying. Dont go and visit (except as a daughter) and dont get suckered in to making regular visits again. I would also recommend that you dont contact your sister for a while either.
 

Wildflowerlady

Registered User
Sep 30, 2019
263
Listen to what the care agency manager is saying. Dont go and visit (except as a daughter) and dont get suckered in to making regular visits again. I would also recommend that you dont contact your sister for a while either.
Thank you @canary sound advice which I will listen to.
I do believe the Care Company having spoken with them today have to try certain routes/methods in order to show that everything has been tried before refusing to continue dads care. The one thing they haven't agreed to is to double up on dads care visits as they don't believe it will be of help.
This has included waiting to see if the Risperidone has any effect on dads aggression his dose is low its .25 mg. It does appear their hands are pretty much tied until such time as there is further evidence of his undesirable behaviour/refusal of care to show the ASC that care cannot be given at home .
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Its a shame the care company can't provide evidence of previous troubles and incidents with your dad to SS that could convince them of his needs but if they won't or can't, or have but it's not enough then I think the care company need to do what they're supposed to and try visits again now dad is on new medication to show that they have tried. And you and your sister need to show it too, which is unbelievably hard to do and I really feel for you and your sister.
I hope that the care visits either work now dad is on new medication, or they can say to SS that visits aren't enough and prove it to SS without a crisis. Its a hard system to deal with and you're trying to do it while looking after your husband and maintaining a relationship with your sister who has different ideas which must make things incredibly difficult, my sister and I mainly have the same sort of ideas about caring for mum so I haven't had those extra things that you have to deal with. Sending you lots of virtual hugs and strength and hope it is sorted soon 🤗 🤗
 

Wildflowerlady

Registered User
Sep 30, 2019
263
Dad had a visit from Jet Team today sister made the arrangement yesterday. I was actually told she had been asked not to do a call into dad this morning and to step back a bit she confirmed this was said in an email she sent. The Care Company were expecting the Jet Team to make an arrangement with her for the morning but turns out she said to them it would be better to call in with dads lunchtime carer today.
Sister had decided she still wanted to do dad his cooked breakfast. Care Company say they can't say when we can go see dad so can only advise her to step back a bit but not enforce it so looks like she is set to carry on.
I'm afraid I couldn't help myself and did reply and I did query why she had declined the Jet Team coming in this morning as that is when dad has a 45 minute call and they were wanting to come to see how the carer deal with dad especially his personnel care which involves his morning clean up and getting dressed. If she wanted the carer can provide dad with a breakfast as well. Her email back to my reply was contradictory she is now saying they had picked lunchtime :rolleyes: I read her earlier email again it wasn't my imagination she clearly stated she had asked for visit to be at lunchtime not morning. Sister did leave dad with his morning carer after his breakfast for carer to get dad washed and dressed.
I received a phone call this afternoon from the Crisis Team to be honest they never seem that clear who they have called as I think three times they have actually thought they were calling my sister but they do have contact for both of us as I made sure they did same with ASC and I would always be prepared to help if I can.
The Jet Team member that had gone in at dads lunch call with carer felt that dad was quite unsteady he did refuse lunch. I was told by Crisis Team that they had decided to consult with their Doctor and it has been decided that the Risperidone that dad was put on at a low dose a week ago is to be stopped for a couple/few days to see how he is without it. There is also an arrangement that Jet Team will go in with carer on morning call tomorrow.
I said I would go to dads and remove the drug from the kitchen drawer where his medication is kept and leave a large note on carer book so that the carer tonight doesn't give it to dad.
I also called dads Care Company and informed them so they will also inform the carers. I was asked is this the one for dads aggression I said it was and also confirmed I would remove the medication and leave a note.
I tried to call my sister having unblocked her from my mobile the other day. I actually blocked her months ago because of her behaviour towards me and nasty texts. I wanted to leave some means of communication open so that has always been available via email or my home number it was limited as much as possible as even that wasn't nice most of the time.
Sister didn't answer I tried twice so just sent a brief email asking for her to call me as I thought it might be quicker to explain on phone. I received an email back saying ' What do you want' nothing more. I decided not to answer then as felt her reply was rude and abrupt.
I made my way over to dads to leave the note for bedtime carer and I removed the Risperidone and put in the back of a cupboard so they won't give in error should for some reason the note get mislaid. As it was the afternoon/teatime carer was still there I did apologise for my arrival but felt it important to make sure the pills were removed from the drawer and note left asap.
Dad had wanted sausages egg and beans on toast so the carer was cooking its not something she expected to do on this call its normally just a tea and small cake sometimes nothing as dad refuses. Meal was identical to the breakfast sister had cooked him. Dad said he hadn't had breakfast so clearly was muddled.
Carer had to leave as soon as dad started eating its only a 30 minute call and she was running late so I said not to worry and I would see dad eat his meal, clear up and make sure he was settled back in lounge before leaving. I would have visited dad at some point today anyway but I didn't really intend to interrupt his carer.
I read dads notes from the morning and lunch visits both state that dad was shaky and unsteady. This was one of my concerns about this drug amongst others which I had expressed to my sister last week when she said dad had been prescribed it. It can have some side effects which give symptoms like Parkinson's which I already see in my partner as he does have Parkinson's. It was noted just before dad was put on the drug he had some shakiness so perhaps its not the drug or maybe the drug has made him worse.
I emailed sister when I got home explained the situation. I also pointed out that an email I had sent regarding dads schedule for tomorrow and the rest of week had actually been sent two hours after I received it from Care Company as she saw fit to complain about not having it. Apparently sister had needed it earlier in the day to inform the Jet Team of what time dads carer was due tomorrow morning but I wasn't aware of this, they might even have called her before I received it. Typical of sister she then says she isn't normally bothered what time I send the schedule but clearly she is as she text me at 5.40am one morning which did waken me just to complain as I had sent a schedule late one evening as I had genuinely forgotten to forward it. Clearly it was an error on my part and I said I was sorry. It didn't matter to her it was still there when she got up in the morning. Sister actually goes to dad same time every day anyway regardless of when a morning carer arrives. Care Company only send a schedule out to one person it just happens to be me and I forward it every Friday to her.
During my call with Crisis Team she also mentioned its possible that a Occupational Therapist might be sent in to see if dad is safe with stairs as his bedroom is upstairs. I don't know what they will do if he can't manage stairs and they are actually talking about possible alterations to his bathroom to aid his carers with personnel care. Bathroom is upstairs and downstairs toilet is tiny no way will carer get in there with dad if they change pad downstairs they are standing in hall while dad stands in toilet :rolleyes: . The stairs is something I have brought up not only recently but several months ago as dad has gone up and down stairs at night carrying a catheter night bag and bowl, he had carried night bag down his stairs last week to call me around a hour after care had put him to bed and left.
Five weeks before my mum died she couldn't manage the stairs and had to sleep in her lounge so somehow my partner and I brought the old single bed from the spare room down the stairs and set it up, it was more a case of sliding it rather than lifting it and was the day before mum came out of hospital. This was just over 4 years ago before my partners Parkinson's accelerated to what it is now. Mum didn't have any dementia so she wouldn't have got muddled about where she was sleeping whereas dad probably will. If necessary I can order dad a single bed but I don't think dad will be happy about sleeping downstairs.
The single bed mum had was actually disposed of when the hospice arranged a proper medical bed for her it was very old and not that comfortable. Mum passed away at home in their lounge I did a lot for my mum when she was poorly staying overnight to watch over her in her last few days so dad could go to bed but my sister seems to have forgotten all this.
Today sister says in email I am not a caring person that I am two faced in one breath she complains as she thinks I don't do enough in next if I show care and help as best I can I'm two faced. My hope of being able to see dad through this stage together are pretty much dashed. I wish I could give up contact never think about her again but whilst my dad is still here in his own home its not really possible is it ??
 

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