Hello again....(carer having "issues"

[Carer16]

Hello again.

All I seem to do is moan these days..do let me get the apology in before I start.

If you are feeling a bit fragile...this may not be the post to read!!!!

So , recently hubby had respite while I went away overnight for my bday.I had a week off which turned into Two weeks as I had a knee problem so felt it advisable to rest up and use my alloted days I had left.whilst away I had a call ON MY BDAY from the care home asking me to ring.

It wasn't important although I understand why they rung. It could of waited a day though, it was just to question an appointment for the following week.

They left a message again whilst I was at the footie match... so I get into hotel at 10pm ..phone message to ring... Panic... Oh no it was just to tell you we found out why we originally rang you....

Yes...I know..I spoke to you at 4pm !!!!!!

Panic over.

I took up extra tablets on a visit to see hubby.

Despite this I get a call to say he's run out of tablets(this happened before)

I'm like no no no not this time. There's definitely a new 28 pack there.

They didn't ring me back..couldn't get the nurses so I rang and said you have an hour to find these tablets or I'm reporting it.

Low and behold.... Phone call twenty mins later..... so sorry we have found them.

Asked why they had ring me..well night staff must of used the last and just left a message for us to ring you .but yes ..all his meds are here.

Now.

I've not been very well. I've been waiting for a heart scan on Friday and they knew I've been unwell. Respite is to give me time off , to take a step back.

Our physio came this Thursday.

Turns out although she spoke to them and sent a plan and we took his "pedal bike"in ..he didn't do anything.

She's really cross.

I'm in tears saying no one else bothers with him the day carers just leave him in bed . The problem is if he says he doesn't want to get up they can't make him. Ok but they could suggest he got up for a drink or put a cd on..chat to him for five mins then he may change his mind.they just don't offer choices. And he doesn't remember if it's meal times or he could spend time chatting with them.i totally understand he won't move sometimes....but it's just the easy. option .

I now have problems with care agency again. They send us carers who are regular. Then move them .they even use what is call bully tactics on staff.... Ie this Monday they have no staff to come here..lady who came has resigned as wasn't happy with agency.

So the lady who regularly does Tues and Thurs was told you have to go there Monday . Not to your other regular client and if you refuse I'm taking the shifts off you and you will have no work.... WHAT!!!!!!!

So I'm disgusted at the agency..as they still haven't sorted our shifts.

I feel like I've had no rest, ... And on top of this I'm really struggling with my emotions

Our lives changed five years ago in may.

I've lost the man I love and the life we had.

To me he seems to be declining .I feel I'm really trying, maybe I'm expecting too much... All I want is people to help me give him the best he can have.

I have accepted a lot .... A loveless marriage but it's only because he's not capable of emotion anymore and can only retain things for about two minutes...if that.

I am helping myself.

I went to get assessed for counselling on Tuesday.

Phew the water works went ..but I need to let this grief go.

I cannot live in the past.

I also went to docs asking them to back me up with getting the NHS commissioning group to see the effect this is having on my health. To get appropriate support for hubby. Not carers who sit on their phones all day.

Oh well.. I think that's it. There's maybe some who think I'm giving up... That's how I've felt... When actually I'm not giving up but I'm shouting for help to stop people giving up on him.

Rant over..grab yourself a brew and thankyou if you stuck it through to the end

Thankyou.

[Hidden]

Oh how sad it all is. You deserve more. Life as a carer is so difficult. Do you have family or friends who can help? If you can manage to get away again, ask the carers to phone someone else if there is a problem, tell them they can only phone you in a real emergency. Unfortunately the care home things you describe are pretty normal, we have had 7 years of this with my mother. Please go back to your doctor and see if he can prescribe you a short course of anti-depressants, just to get you back to coping better. Then see if you can find a better care agency. You are entitled to proper regular care for him. If you aren't getting it, contact Social Services and tell them that if they don't help you then you won't be able to care for him any longer and he will be their responsibility. Obviously this wouldn't happen but you need them to help you care in the best way possible. Have you contacted Carers UK, they are very helpful. Are you managing to get some quality time for yourself, even if it's just a coffee with friends. You need to put yourself first, he will be in a much worse state if you aren't well enough to help him.

Living with someone who has lost the ability to feel is so very hard. Caring is easier if the person can understand what you do, but when the person is not the same person you married it is so difficult. I did it for many, many years until my husband died 9 months ago and now my mother is dying. Life can be so exhausting and so desperately unhappy,

[Carer16 in reply to Hidden]

Thankyou for your reply and not judging me...I think people have to walk in our shoes to understand and even then it's different for everyone.

Hubby is funded 100% by NHS so we never have contact with social services .the council he's never had a social worker...should I be hanging on some doors?

Thankyou.

Carers federation have accepted me onto 12 week counselling so it's a start .

[Hidden in reply to Carer16]

You need to ask for a social services care assessment, it should have been done long ago.

[Hidden in reply to Carer16]

Thinking of you Carer16. I hope you get a great counsellor. It has taken me several goes to find the right one but she has / is making a big difference. Its still a long process but I hope and pray you find some peace and inner strength with the right support, support you deserve. You are so strong. You have proved that.

Hugs

🤗

[cat3]

Just want to echo all exhaustedwife's wife's comments as she is probably the most experienced carer we have here, and to wish you well in finding better services for your husband and some periods of uninterrupted respite for yourself.

You have a hard time of it, no question, and I hope there are better days ahead for you both m'love. Cat x

[woodrz]

“I now have problems with care agency again. They send us carers who are regular. Then move them .they even use what is call bully tactics on staff.... Ie this Monday they have no staff to come here..lady who came has resigned as wasn't happy with agency.

So the lady who regularly does Tues and Thurs was told you have to go there Monday . Not to your other regular client and if you refuse I'm taking the shifts off you and you will have no work.... WHAT!!!!!!!

So I'm disgusted at the agency..as they still haven't sorted our shifts.”

Seems to be the way of things - my wife saw that sort or crap behaviour from the inside of a “care” agency whilst my parents saw it for three years as customers of one. To be fair, their agency was not terrible, but is still happened. It feels totally wrong that so much of this activity is managed for profit, and all involved bar te owners are made miserable and ground down over time.

[leila65]

Hi omg my heart broke when I read your post.. You have been dealing with so much for so long it's no wonder you need to let it out I'm so glad you felt able to share hear and the support already advised by everyone is excellent so I have little to add. I'm a full time carer for my son however my circumstances are much lighter than yours.. Yet still I feel the need for counselling again. Iv already had 12 weeks before Christmas... And have asked to go on the list. There is nothing for me that helps me more than being able to offload and make sense or just accept and allow myself to have some of the awful or emotional feelings and fears I have.. I too have a lot of grief and iv had to go on medication just to help me get thru until my son has his op. Don't underestimate the horrendous impact this has had on you and the length it's being going on. I honestly can't imagine how you have coped with such extreme stress and its no wonder its affecting your health too. Do push for a needs assessment and I pray you get the support carewise that is sadly lacking. You are an amazing woman for even just still being here still in these very worse circumstances in your life and you deserve more than a few weeks respite.. I think a year would still be too little!!

Wishing you the best counsellor possible and sending love and hugs x

[bridgeit]

Hi Carer16. Speaking as an ex-carer, I think you should bear in mind that at some point you must put yourself first or you will wind up needing urgent care rather than providing it. There are no prizes for sacrificing your life, and guilt over perceived dereliction of duty is neither valid nor a reason to ignore making a very difficult and self-preserving decision.

Care does not always have to be provided by carers at your home, particularly when circumstances change/worsen.

The time may have come, or be close at hand, for you to look for residential care for your husband. You can visit him regularly, which will definitely help ensure he gets good care. The main thing is, you will get your life back. Residential care might seem unpalatable, but sometimes it is simply necessity.

I was run ragged as a carer, while the rest of the family just let me get on with it - apart from throwing in the odd critical comment when they felt something wasn't quite up to standard. I rejected the possibility of residential care until doctors insisted, but the toll this delay took on me left me with an acquired, permanent, debilitating condition.

I know all about frustration, despair and fury and I understand where you are coming from.

I recommend that you look into local residential care homes. Find out which ones will work to the local authority benchmark fee and visit only those, alone at first. Do not make an appointment. Avoid lunchtime. Bear in mind that non-benchmark homes may be better, but these will expect a top-up fee on whatever the council will pay - and it can be a lot of money e.g. £500-£800 extra per week. Nursing homes will cost more.

You might not find a care home that suits you; but at least you will have considered options for your own future well-being, especially if things deteriorate. If you do find a good care home, you could go on the waiting list for now.

Meanwhile, please bear in mind that you are not, by any means, alone as a carer when experiencing frustration, rage and despair. No carer will ever judge you; we've all walked a mile in those shoes.