any advice please

[jellymac]

I wonder if I could ask for advice please. My mom was diagnosed with Alzheimer's when she was 65, nearly 66, she's 71 now. In the last 6-12 months she's gone downhill rapidly. My dad is her 24/7 carer, he has to do absolutely everything for her now. Up to now my dad has refused all types of help, has been desperate to do everything himself, feels like its his duty to do everything, he has always felt like he'd be letting my mom down if he didn't do it. My mom does go to day care twice a week but that's it. Things have got so bad now my dad is physically, emotionally and mentally exhausted, he is constantly saying he cant cope anymore, that he's just going to pack his bags and leave and yesterday he even said he feels like he's going to loose it. Every time the phone rings or I cant get hold of him i'm scared its because something bad has happened. About 4-5 weeks ago we made the devastating decision to look for a care home as we are so scared my dads going to have a breakdown. It has been the hardest decision we have every had to make, one that we certainly haven't made easily or lightly, my dad has never even thought about the idea before cause it was never going to be an option, which just shows how desperate he is now. The problem is with social services, a social worker came out last week, she wasn't a bit interested in my dad, he kept telling her he cant cope and she just kept saying yes you can. She called a couple days later to say they wouldn't authorise a home but my dad can have home help if he wants. My brother has complained cause the situation is far too desperate for that, so her line manager came out today. I am so disgusted with his attitude, he kept saying a care home is the last resort and unlikely to be authorised, he kept trying to put us off my saying how expensive it would be, then he said its the last resort as its too upsetting for the person to be locked up in an institute, his exact words. Then he tried to make out like my sister, brother and myself could do more to help, I have my mom for a few hours on a Monday, with them on a Wednesday and work part time. All 3 of us have young children between 2-11, we do everything we possible can but need to put our children first. We are going to have carers come in twice a day for 6 weeks to assess the situation. I guess my question is can the council refuse a care home even if the situation is desperate? They will be part funding.
Thank you and I'm sorry for the long post.

 

[jasmineflower]

Hi Jellymac,
What a desperate situation. Has your father had a Carer's Assessment? This would be for his own needs, not your mothers and should include respite care.

There are several issues here: one is that no adult can be forced to care for another adult. Your dad can refuse to care for your mother and then SS will have to step in. They are heaping the guilt factor on you and your family as free family care saves them a fortune.

One course of action would be to ring the SS emergency line and tell them that your father is suffering from Carer Breakdown, can no longer provide care, and is being sent to convalesce (with family or friends) leaving behind a vulnerable adult. You will all need to be strong and be adamant that no one else in the family is available to step in. The NHS works best in a crisis situation and sometimes you have to engineer this.

You should also get your dad to the GP for an assessment as it sounds as if this is having a bad effect on his health. It would support the case that he can no longer provide round the clock care. Ideally, have a diary that shows all the care your mother needs on her worst day from morning to night as this will help the doctor assess how critical the situation is.

I'm sure other people will be along with better suggestions. You can understand how some people get to breaking point and leave their relations at A&E, can't you?

J x

 

[Shedrech]

Hi jellymac
what a horrible meeting with the SW manager - I know their services and finances are strained, but to say such things is appalling (make a formal complaint when you have the energy)
jasmineflower has written what I was thinking - including taking your father out of the house, which is terrible to have to contemplate
you haven't even been offered the maximum 4 carer visits - and more day care

I believe Age UK may be able to act as an advocate on your father's behalf - it might well be worth speaking to them and the CAB

I wish I could think of more than just to send much sympathy

I've just picked up on this

he kept saying a care home is the last resort and unlikely to be authorised

so 'unlikely' means that it's not impossible and also hasn't actually been requested?? - is that what he said? if those were his actual words, I'd be tempted to e-mail/write to the head of Adult Services and quoting exactly what has been said to you and point out that this certainly is your 'last resort' as your dad has done everything else and will not be able to care at all if his health deteriorates and he ends up in hospital himself

best wishes

 

[chick1962]

What you just posted so rings a bell with me . SW are not my fav ppl as they make you feel so guilty asking for help. They don't listen and keep on saying you are doing fine . Pls contact carer support or am Admiral nurse if you got them in your area . They will certainly help you and liaison too. Much love xxxx


Sent from my iPhone using Talking Point

 

[jellymac]

Thank you all so much for your replies. Jasmineflower we did ask for a carers assessment but nothing has been done, I admit we haven't asked since, it took a month of phoning every day to get them to assign a social worker, even though it was classed as critical, I think we forgot about that. I can totally understand why some people would take their relative to A+E, the whole system just seems to be about money and they don't want to listen. I know no matter how desperate my dad is though he never would cause hes already said he would feel like hes abandoning her, even if it means getting the help both of them need. I think going to his doctor is a good idea, im going to get him to do that. Shedrech I must admit they did ask if we wanted day care 5 days a week, we said yes but then he admitted they didn't have spaces any other days so that's no help. The social workers exact words were it has to go through him and he'll do everything not to have a care home, if he agrees to one it has to go through his line manager who will do the same. It then goes to the top manager and she rarely agrees to anything. Chick1962 thank you, you hear so many bad things about SS and so far I have to agree, I know everyone has their budget cuts but that's not at the sack of carers health. Im so scared Im going to loose my dad as well as loosing more of my mom everyday.

 

[jellymac]

Thank you Carmar, we did ask for respite while we waited for other things to happen, again this has been ignored by them as well, I think it would help my dad massively at the moment. My brother has got the line managers direct number so i'll get him to call him and demand that, I guess we didn't think to bring it up yesterday. I think my dad would very much agree to it as he's feeling so down. I guess in a way I can see SS point of view my dad has gone from no help to asking for a care home, but that's just because he couldn't bear the thought of not doing everything for my mom himself, he wouldn't even let my sister, brother or myself help at the beginning. The scary thing as well is he admitted to the social worker yesterday that he doesn't tell most things to us, what we know is awful enough so I cant imagine how bad it really is. The day we had to make the heart breaking decision about looking for the care home my dad broke down and sobbed, ive never in 35 years ever seen him cry before, even when his mom died he only had tears in his eyes, nothing like he is now.

 

[jellymac]

Thank you carmar. Im at my mom and dads now, my dad has been told to keep a diary, he said earlier he cant be bothered and hasnt got the energy he then said it would be easier to jump off a bridge. Im not sure if he meant it but im really scared, i dont know to do

 

[Shedrech]

Hi jellymac
your poor dad - SS need to know that he was too proud and independent to ask for help before this and that is why he is so exhausted - so, may I suggest you use your mobile to record what your dad is saying, and as importantly HOW he is saying it ie NOT flippantly, then call SS and play it to them - make it clear that you don't know what to do - and please, don't be afraid to let your own emotions show, they need to know that you are distressed too
sorry, this is a horrible thing to suggest, but you need to get their attention
also let his GP know today, you need back up
wish I could think of something else to help
PS maybe call the helpline
https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365
0300 222 1122 open 9-8 today

 

[Kikki21]

Having worked for a county council in part of the social services environment, I knew first hand of all the budget cuts to services especially to the elderly.
From my brief experience, it seems you need to keep pushing & pushing till they eventually agree to listen to you.
If they don't think it's urgent then SS will just sit on the referral. It was only when I rang up & chased them & told them truthfully that I didn't know if my mum was eating, that she couldn't do this herself & couldn't bathe properly & was getting sores that they kicked into action.
It still took another 2 months till care was put in.

 

[jellymac]

Thank you Shedrech, ive called my dads doctor but he is on holiday till next week, there is a locum but I would prefer to see my dads own as he's known him for a long time, im going to try and get my dad in Monday. I think recording my dad could be a good idea, I felt like when we were talking to the SW they were ignoring us like we were just exaggerating things. Thank you Kikki21 thats what we are going to do, its scary that things do take so long to get provided. Thank you Carmar I told my brother and sister straight away, hopefully we can tell his doctor Monday. I cant stop crying, I feel so helpless, I called them a few times earlier and there was no answer, I know it sounds really silly but I started to panic. My mom and dad do have a small amount of savings, we didn't know you can arrange respite without SS, we thought you had o go through them for that as well. Will start looking into that straight away.

 

[Aisling]

Thank you Shedrech, ive called my dads doctor but he is on holiday till next week, there is a locum but I would prefer to see my dads own as he's known him for a long time, im going to try and get my dad in Monday. I think recording my dad could be a good idea, I felt like when we were talking to the SW they were ignoring us like we were just exaggerating things. Thank you Kikki21 thats what we are going to do, its scary that things do take so long to get provided. Thank you Carmar I told my brother and sister straight away, hopefully we can tell his doctor Monday. I cant stop crying, I feel so helpless, I called them a few times earlier and there was no answer, I know it sounds really silly but I started to panic. My mom and dad do have a small amount of savings, we didn't know you can arrange respite without SS, we thought you had o go through them for that as well. Will start looking into that straight away.

Am so,so sorry Jellymac how awful for all of you. Sending you support. It is dreadful situation. Get on to doctor on Monday and tell him/her everything. Your poor dad. He has made a major call for help. Surely the doc will do something quickly for him and your Mum.

I will be praying for you all.

Aisling xx

 

[jellymac]

Thank you Aisling. So the carers were meant to start yesterday morning, twice a day and they are supposed to assess the situation as well. My dad was really nervous about them coming. Can you believe nobody bothered to turn up. We phoned and complained and they just said sorry was a mix up. I really feel like they are not interested or bothered and its going to take something happening to my dad for them to act.

 

[sunflower123]

I wonder if I could ask for advice please. My mom was diagnosed with Alzheimer's when she was 65, nearly 66, she's 71 now. In the last 6-12 months she's gone downhill rapidly. My dad is her 24/7 carer, he has to do absolutely everything for her now. Up to now my dad has refused all types of help, has been desperate to do everything himself, feels like its his duty to do everything, he has always felt like he'd be letting my mom down if he didn't do it. My mom does go to day care twice a week but that's it. Things have got so bad now my dad is physically, emotionally and mentally exhausted, he is constantly saying he cant cope anymore, that he's just going to pack his bags and leave and yesterday he even said he feels like he's going to loose it. Every time the phone rings or I cant get hold of him i'm scared its because something bad has happened. About 4-5 weeks ago we made the devastating decision to look for a care home as we are so scared my dads going to have a breakdown. It has been the hardest decision we have every had to make, one that we certainly haven't made easily or lightly, my dad has never even thought about the idea before cause it was never going to be an option, which just shows how desperate he is now. The problem is with social services, a social worker came out last week, she wasn't a bit interested in my dad, he kept telling her he cant cope and she just kept saying yes you can. She called a couple days later to say they wouldn't authorise a home but my dad can have home help if he wants. My brother has complained cause the situation is far too desperate for that, so her line manager came out today. I am so disgusted with his attitude, he kept saying a care home is the last resort and unlikely to be authorised, he kept trying to put us off my saying how expensive it would be, then he said its the last resort as its too upsetting for the person to be locked up in an institute, his exact words. Then he tried to make out like my sister, brother and myself could do more to help, I have my mom for a few hours on a Monday, with them on a Wednesday and work part time. All 3 of us have young children between 2-11, we do everything we possible can but need to put our children first. We are going to have carers come in twice a day for 6 weeks to assess the situation. I guess my question is can the council refuse a care home even if the situation is desperate? They will be part funding.
Thank you and I'm sorry for the long post.

well, this is shocking behaviour from people who are suppose to support carers and sounds that they are in the wrong job!!! I felt I had to reply because Ii have been in this situation. My dad has alzheimers and is now in the final stages. My mum was his 24/7 carer with 2 days off in a week as he went to a day centrit was time to put her first e. 3 years ago my mum was so stressed and had lost a lot of weight. She was the same, too proud to put him in a home and there was no POA and worried about money, but the time came to put her first. I called the CPN and expplained my concerns about my mother and said that it was time my father went into a care home. This indeed happened and all my mum did was sleep annd sleep.. Took her to GP and was sent straight into Hospital. Unfortunately she died within a week. YOU NEED TO PUT YOU FATHER FIRST NOW FOR HIS SAKE. Sorry if I sound a bit straight but I found out later that this happens a lot and that it's very common for ccarers to go first. I wish I could turn the clock back and had acted sooner. If Ii were you I would put your foot down and demand the care that you mother is entitled to under our social care. Good luck and best wishes to you xx

 

[jellymac]

Thank you Sunflower123, Im so very sorry that you lost your mom on top of your dad having this horrific disease, must have been/must be awful for you. Things are just unreal with SS, I called my moms social worker Wednesday and told her about my dad saying it would be easier to jump off a bridge and asked if we could have emergency respite before something happens, she told me she'd have to speak to her line manager and would get back to me, not heard anything from her. Today I went round to my mom and dads with my 2 daughters (7 and 2), they were at the doctors so we waited, my mom had an accident (in the toilet department) on way back. When they got in my dad was trying to get her upstairs to toilet, my mom didn't understand, then when he did get her there she started pulling at her clothes and poo starting going everywhere. my dad started really shouting at her and my mom started sobbing, now my dad would NEVER normally shout at my mom but that's just how low and desperate my dad must be feeling, I tried to take over from my dad but he started shouting at me, I must admit I did raise my voice to him which I now feel really bad about. I went back downstairs and my eldest daughter was upset so I had to take them home. I called my moms day care and they do have a care home but don't do respite, I don't know if we can pay ourselves for respite and not have to go through SS. The lady there gave me a number for the council for emergencies which I called, it was like a first response, I explained everything, the woman here told me they were busy cause of an emergency, I did get annoyed cause I think my dad feeling like he is is an emergency, she also said we as a family have a duty of care to look after my dad so he's not feeling like this, I said my dads only like this cause you wont help him and where's your duty of care, she didn't answer. She made out like my dad is some kind of monster cause he shouted at my mom, then said we'll refer to social worker who will get in touch. I don't know what to do.

 

[Spamar]

How these d... people can tell so many lies and half truths I really don't know ! I feel so sorry for you. I was 'lucky' I had a breakdown in front of one of our county family Carers and she got things moving pdq. Also lucky that we had the money for respite care and there was a vacancy.
Thinking of you.

 

[jellymac]

Social worker called me back, couldnt get emergency respite, the best they could offer is someone sitting with my mom for 2 hours tomorrow and monday to give my dad a break, not great but i took them up on it as my dads desperate. So my dad cane round to mine and ive told him. My dad then starts having a go at me saying im a joke hes fed up of me interfering and hes perfectly able to cope on his own. I said u cant dad and you keep saying you cant. He then said when they turn up hrs not letting them in, its his house and he'll do what he likes. Hes now not talking to me. What do i do, was i wrong to call them? Im so scared somethings going to happen to him i was just trying to help x

 

[canary]

Oh jellymac, Im so sorry, you cant win either way can you?
I do not think that there is anymore you could have done and I do think that you needed to speak to SS so that they are aware that your dad is not coping.

 

[jellymac]

Thank you canary. So after my brother spoke to my dad friday night he agreed to have the extra carers for 2 hours sat, it didnt go well, my mom got that upset and aggitaited my dad ended up sitting in living room with my mom and the carer, the carer is supposed to be coming today as well and my dad said theres no point and hes just going to send her home. He doesnt understand it wont look good to ss if he doesnt have her. Also the carers that are coming morning and night are supposed to be assessing the situation and writing down whats happened, this morn my mom started screaming and being aggressive to lady but she hasnt wrote that down, shes just put washed, dressed all ok. My dads now gone back to how he was 6-8 months ago saying he can cope fine, doesnt want anyone including us helping or interfering. I just dont know what to do.