Hi, I am back looking for help again. I am full time and sole carer for my partner, however when looking for advice on previous issue of her "wanting to go home", when I contacted the helpline, as well as pointing me here they also said I should contact Dr and Social Services. I mentioned this to Dr who said they could arrange for someone to sit with my partner while I go shopping! Firstly, we are in Lockdown, secondly I am shielding and thirdly, I don't want to go shopping! Today my sister said she had spoken to her sister-in-law who is a Social Worker, who also said I should contact Social Services as she is worried I will burn myself out. Does anyone have experience of Social Services and any thoughts on what they can do or help us please? I feel I am doing ok but I see my partner deteriorating on a daily basis and wonder if I should reach out to them but I don't want to upset things and start something that is not right for us. Any thoughts would be really helpful, thank you.
Should I contact Social Services?
- Thread starter Jazzmax
- Start date
Hello @Jazzmax
Things will differ from area to area but a couple of years ago I reached crisis point and Social Services arranged a couple of hours day care 3 times a week so that I would get little breaks from caring for my wife.
I had to be very firm about the fact that it was they who had the legal duty of care towards my wife, not me, and that I just could not and would not continue with things as they were.
It helps if you can convince them that you are at the point of carer breakdown - which, unfortunately, was easy for me to do.
I have seen it written, and found for myself, that we carers have to be very assertive to get any help. If SS think you can manage they will let you carry on - but they have a duty to you too and they need to be reminded at times.
Things will differ from area to area but a couple of years ago I reached crisis point and Social Services arranged a couple of hours day care 3 times a week so that I would get little breaks from caring for my wife.
I had to be very firm about the fact that it was they who had the legal duty of care towards my wife, not me, and that I just could not and would not continue with things as they were.
It helps if you can convince them that you are at the point of carer breakdown - which, unfortunately, was easy for me to do.
I have seen it written, and found for myself, that we carers have to be very assertive to get any help. If SS think you can manage they will let you carry on - but they have a duty to you too and they need to be reminded at times.
My husband had a care assessment and an offer of person coming once a week to take him out for a maximum of one and a half hours.
Two week later I had a Carer’s assessment and to give me a break (sole carer) he was given one day a week day care to be increased to two days if he settled. within a couple of weeks he did get the two days a week. I’ve+no idea why he was not offered the two days day care when he had his assessment, Maybe giving him the day care was justified by it helping both carer and cared for.
I would recommend speaking to social services.
Two week later I had a Carer’s assessment and to give me a break (sole carer) he was given one day a week day care to be increased to two days if he settled. within a couple of weeks he did get the two days a week. I’ve+no idea why he was not offered the two days day care when he had his assessment, Maybe giving him the day care was justified by it helping both carer and cared for.
I would recommend speaking to social services.
I am the carer for my OH and I reached carer breakdown just over a year ago. My children contacted SS on my behalf and following a needs assessment for OH I had carers coming to help him get washed dressed etc in the mornings. I was doing this beforehand, but it gives me a bit of a break and allows me time to get a few other things done without interruption. The carers have come all throughout the lockdown - they are spot on with their hygiene, come in PPE (mask, face shield, plastic apron and gloves), are checked weekly for covid and have all had at least one covid injection. I am not concerned about them coming even though OH has been shielded. I have honestly found them a life saver. OH wasnt keen to begin with but he really had no choice and now he rather likes them and chats to them.
OH was also going to start day care, but infortunately he never actually started as the centres shut when lockdown started and havent yet reopened. I hope that they will reopen soon.
OH was also going to start day care, but infortunately he never actually started as the centres shut when lockdown started and havent yet reopened. I hope that they will reopen soon.
I have a carer come and sit with my husband once a week for three hours, it was two to start with but they upgraded me to three. It was good to start with I could get out and go into town and basically get around.
When we had the first lockdown I cancelled the carer as because I couldn't go into town or go anywhere specific I thought it was pointless.
I was so relieved when I started having the carer back. This time even in second lockdown I continued having the carer here. At least I can go for a walk. I can get out. I can breath.
Sometimes, especially if the weather isn't good, I don't go out for the whole three hours. Sometimes I just sit and chat to the carer, real conversation. Then when my husband needs something, even though I'm there, it's the carer who jumps up and sees to his needs.
You need that break.
For us, social services organised a respite stay for when dad needed to have a special diet before hospital tests and recovery afterwards, which was great, and they advised on what we should do when dad was being evicted (told him to stay put as a squatter!). They didn't offer any care packages (I think dad may have refused but besides, they considered him ok to go to the local shop for food, and his skin was ok, even if he was living in filth). So a bit of a mixed bag! Carer burnout is real, try to make sure you have some time to yourself.
Thanks for the responses, I didn't know whether that was all they had to offer. At the moment I take the dog out for a walk for about 30 mins every day which I have always done, but lately when we get back my partner is standing by the window wanting to know where we have been and for so long etc. It is knowing and trying to do the right thing which I struggle with.
Last week she fell asleep and fell off the kitchen chair, banged head and knees on hard tiled flooring. After a couple of hours in A&E I have now banned her from sitting in kitchen when I am not there. There is always something!
Last week she fell asleep and fell off the kitchen chair, banged head and knees on hard tiled flooring. After a couple of hours in A&E I have now banned her from sitting in kitchen when I am not there. There is always something!
Because of lockdown my experience with Social Services has been limited and only over the phone. My wife has Alzheimer's but I found that Social Services could only offer limited help and they wanted my wife "off their books" as soon as possible. What I would say is that pre lockdown I had two voluntary visitors onehwho sat with my wife and I went swimming and one who took her singing and you cannot beleive how hard lockdown hit me. I thought I was coping OK until the carers stopped. Please Please take advantage of having some respite, my experience tells me that you do not realise how much stress you are actually under until respite is taken away.
I’d definitely say you should seek support. I was ‘lucky’ that my partner went walkabout during the night last February which meant that police were called and Social Work informed. This allowed a package to be put in place which was 2 days at day care and 4 hours of a carer to sit with him. This was reduced once lockdown started but at least some support has continued. I then had to ask for help with showering as he became incontinent. I feel that I am very fortunate to have this support when I read of the situations others are in. It gives me space to myself, allows me to go for a walk and benefits my partner who has different company and stimulation. I never thought he’d accept it as he has. You need to take what is on offer.
I
I
Thank you so much sharing with me. I have spoken to a contact at Carers Trust today who told me about Dementia Social Care Practitioner so I am going to contact them tomorrow. I think I need to accept that I am not superwoman and that I need help! It can't hurt to speak to someone and even if it doesn't work out for us at least I will have tried. It is so reassuring to hear of your experience, thank you.
Interested reading this. Our SS in Covid times told me only assessments that can be done would be over the phone... can't assess my OH ( with AD) without seeing him! And if I speak about him on the phone he listens to every word. So I was told just to wait till after lockdown. As for support? As we would be self- funding, I don't think we get offered anything. And OH doesn't want to pay anything for any carers so it is just me. We have no family. Am currently able to leave OH alone for max an hour - but it had to be a good day, and fearful this might not be the case for long. Am I being fobbed off? Should we get more?
@Pots and Pans I am in a similar position to you, we would be self funding. I am my Husband's sole Carer, he needs constant 24 hour care, I seldom get more that 2 hours sleep at a time, as he is in and out of bed 3/4 times in the night, so I end up having a nap in the afternoon, when he nods off and again in the evening. Problem is I can't get through everything which needs doing. He can't communicate and I don't feel he understands anything I say to him, even when I use his name to get his attention, he can't find his way around the house so I have to take him to the dining room for meals, which I have to cut up for him and put his knife and fork in his hands, he doesn't even seem to know when he needs to go to the toilet, he can't find the bathrooms or know what to do when he gets there. I can barely leave him in a room on his own to prepare our food. I have an online delivery every week and haven't had a walk for over 12 months now and for someone who has spent their retirement as a Volunteer Walk Leader with Walking for Health, it is hard to feel your fitness declining, both mental and physical.
When I asked the Doctor last year at my Husband's medicine review, for an assessment he said he didn't know what I was talking about, it was nothing to do with him, he only prescribed his medication, make sure it was suiting him and there was nothing else he could give him anyway. The Carers Association asked me what support I thought I needed, I said that I could do with someone to come in and take over from me for a couple of hours, she replied "We do not work miracles", While the Admiral Nurse, thought I was doing a great job and I was very strong so it was best to carry on as I was. AgeUK used to ring every 6 months but last call about 18 months ago she said they were having a restructure and she didn't know if she would have a job after that. I haven't heard anything since.
I try to carry on as best I can. I wish you well.
Do you and your husband have the same doctor? If you do then it is his job to care for you also. You need help and the doctor can refer you to social services. They can then assess whether they can help you and how. If you have a different doctor then that is who you should contact.
As to the Carers Association "we do not work miracles" - that was uncalled for. I haven't any dealings with Carers Association, but keep looking. If the doctor can't or won't help there is help out there. It's a matter of finding it.
But I would push with your doctor, lay it on thick and tell it how it is.
"But I would push with your doctor, lay it on thick and tell it how it is"
Absolutely.
Keep a diary for a few days, noting how you are woken in the night, and if its hard to settle him after. My husbands terrible sleeping patterns was a big factor in his being hospitalised to adjust his meds. He later moved on to a care home.
Also note all potentially risky behaviour by him. They will act if they feel you can no longer be sure you are able to keep him safe.
I had tried respite care too but most homes were rejecting him as too difficult.
You could try this? Two weeks break may be what you need. A few months earlier when he was a bit easier I'd done a week and it felt like heaven, unbroken sleep and a weekend with daughter.
Absolutely.
Keep a diary for a few days, noting how you are woken in the night, and if its hard to settle him after. My husbands terrible sleeping patterns was a big factor in his being hospitalised to adjust his meds. He later moved on to a care home.
Also note all potentially risky behaviour by him. They will act if they feel you can no longer be sure you are able to keep him safe.
I had tried respite care too but most homes were rejecting him as too difficult.
You could try this? Two weeks break may be what you need. A few months earlier when he was a bit easier I'd done a week and it felt like heaven, unbroken sleep and a weekend with daughter.
I have been caring for my husband with mixed Alzheimer’s and vascular dementia for 6 years. My own life has not been easy but I feel like I don’t want to be a carer for the rest of my life. I feel guilty about putting him in a home. But I want some life of my own
Don't feel guilty, @Armenos . I know it is the natural reaction and entirely understandable, but try and put it on one side. I cared for my wife, Margaret, for a similar period as you, entirely on my own as our children live too far away to be able to help on a regular basis and Margaret wouldn't have any one else in the house - part of her dementia is a suspicion of everyone and everything. So I struggled on as I thought was my duty until a day came when I could no longer cope and I had to call an ambulance. I was devastated, but to be truthful I had been out of my depth for some time and the care she received first at the Mental Health Unit and now at the nursing home is far beyond anything I could have given her. So I am sure I did the right thing. But (and it's quite a big but) I still feel guilty. I think you'll find a lot of people on this forum who will say the same. We feel it's our job to look after our other halves, it's what we signed up for , the "worse" part of "for better or for worse", but you do have to think clearly, set aside the guilt and the sheer grief of separation and let the professionals do their job and you'll find they can really do it a lot better so let them and then you can, hopefully, still visit attend to some of the little things but reclaim your life.
God bless,
@Jan L gosh, that sounds far worse than my situation and I am awed by how you seem to cope with this. My OH had a period of a few months after a hospital stay in which he could not be left unattended day or night and it was truly dreadful - I could only handle it with live- in care which ate through savings and I still had to do loads. Both physically and emotionally exhausting... lack of sleep the hardest. Don't know how you manage. My heart ? goes out to you both. But I think this is what I fear. OH is deteriorating and I'm not that good at this - constant interruptions to find lost items etc and no carer since November or anyone who I can ask in these times to take over for a few hours. Like you miss being active outdoors. . Have now registered with Carer Support but doesn't seem much on offer! Alzheimer's Support been round once and helped us claim AA and s disabled parking badge but otherwise everything shut due to Covid... and what does exist is just a club ( no day centre) and my OH would have to be dragged there. SS only interested when nurse reported physical injury to me as that is safeguarding: apparently they get interested then. Police been here twice after aggressive outbursts even carer couldn't handle but all they do is endure he is in a place of safety is: our home! So we feel pretty abandoned actually. Just got to get on with it. Easy to say, hard to do. @Armenos yes, I want a life back too...
@blackmortimer saw your reply to @Armenos and an sure you are right. Do know that CH likely at some point. I am not there yet as we do still have fun together. Good days, and hard day's alternate. When it's all bad I will will choose this route but OH needs to not have capacity by then. It's his money after all, and it won't pay for long. Despite guilt I am not prepared to then do top-up either as we have no kids ( only one died of cancer) as I will.nerd to hang on to what I can for my own future - no OH to help.me... Yep, feeling sorry for myself right now. But got to.go now as time to do the morning get-up routine.
@jenniferjean no we don't have the same Doctor, we are with the same Doctor's Practice. I have been fortunate in having good health and only attended the Doctor when sent for, or it is an acute problem and you see whoever is available. It is a bit of an age thing, the Doctor I did know from when I had my children retired a few years ago and I haven't really seen the same one more than a couple of times for them to get to know me and visa versa. When I was trying to persuade my Husband to go to the Doctor with what I already knew was Dementia he had been with a problem and saw the emergence Doctor at the time, he seem to like him and agreed to see him. He wasn't someone I particularly liked, but my Husband seemed to like him so I booked an appointment with him. I do agree with what you say though I need to find one of the Doctors we can both go to so they can take an overall view of the situation.
Thank you for all your comments and advice. We finally received an assessment on Wednesday 12 May from a Dementia Social Care Worker. She recommended my partner went to Day Centre once a week to start with and I should go private and pay for a Care Worker to come in once a week to do the shower and hairwash. I also secured 17 hrs over 6 months from a sitting service called Bridging the Gap.
Today I used my first hour while I restarted my adult swimming lessons after 15 months lockdown and shielding. When I came home she was waiting at the door for me and according to the Care Worker she had spent most of the hour pacing back and forth looking out of the window for me. She was quite distressed and looking for reassurance when I came in. The carer had tried, making cups of tea, going through the talking photo album I had left out etc. Quite worrying and I don't know if it is worth the stress and upsetting her to do this again.
Also on Tuesday I have booked a half day free trial taster session at a local Day Centre and I am now worried she won't settle and I will have to bring her home. Any advice please? I have told her we are going to a type of Social Club that does activities etc and lunch. If I told her it was a Day Centre I would never get her there. I am starting to wonder why I started all this, I only want to do what is best for her.
Today I used my first hour while I restarted my adult swimming lessons after 15 months lockdown and shielding. When I came home she was waiting at the door for me and according to the Care Worker she had spent most of the hour pacing back and forth looking out of the window for me. She was quite distressed and looking for reassurance when I came in. The carer had tried, making cups of tea, going through the talking photo album I had left out etc. Quite worrying and I don't know if it is worth the stress and upsetting her to do this again.
Also on Tuesday I have booked a half day free trial taster session at a local Day Centre and I am now worried she won't settle and I will have to bring her home. Any advice please? I have told her we are going to a type of Social Club that does activities etc and lunch. If I told her it was a Day Centre I would never get her there. I am starting to wonder why I started all this, I only want to do what is best for her.
