in nearly a year I have had many “robust” discussions with the caree and have now heard, at least 5 times, variations on this theme : “who asked you to be a carer”? / " how have you signed-uo to be one "? / " who told you you were a carer ? " /
" how do you reckon you are one " ?
The caree will barely glance at any relevant article or leaflet put in front of her and, if she does, belabours me on a subject not even mentioned in the article/leaflet. Have any of you been hit with this sort of thing and , if so, found an answer that will stop these nasty questions coming ? Grateful for any help - I am desperate.
I think the best definition is the one which says you a carer when looking after someone is having a significant impact on your own life.
Can you tell us a bit more about your caree?
Age, disability, what they need help with etc.
Do you live with the caree? If so, does the caree own or rent the home? This is REALLY important, once we know the answer, we can explain more if need be. (I’m a touch typist but currently with a sore finger!)
If you provide any significant care. For another individual/s so their needs can be met. Including, physical, mental help and/or assistance. Additionally, running a home and speaking to health professional’s etc. Your care a carer.
Make a list of what you do and hand it over to your caree. And if you didn’t do it who would have too.
You are person of value don’t doubt yourself.
Nothing wrong with that idea: mine would be to just stop what you’re doing for your caree and see how long it takes them to say something.
Hello and welcome!
Make a list of what you do and give them it to read. I quickly did one six months ago when another distant family member asked me “What do you do then?” in a horrible voice at dinner. I handed her it and left the room. Or try remaining in the background for a whole day and see what happens.
Thanks to you all for responding so quickly. This is good advice and in fact , having been told I was “lazy” , started a list of tasks some while ago, Must finish this even though more seem to crop up each month !
To Bowling Bun : the caree is my wife aged 84 who suffers from Parkinson 's , arthritis , very poor mobility and a conviction that she has to be totally in charge . The house was bought half/half and subsequently and for a very good reason, I transferred my share to the caree. The situation that existed then disappeared a few years ago and it has taken a very long time for her to agree to transfer back my initial half share. Incidentally, a solicitor told me that I had `a “Right of Occupation” and , even though the caree ( then sole owner ) threatened to kick me out /sell the house over my head , the law would not allow either to happen.
What a sad situation given your wife’s age. Are you of similar ages. Given you both maybe in your later years. Do you want to see your additional years out living this way.
Can you get yourself out of the home for some me time.
Hi Joes,
Has your wife always been like this?
Do you think that she is heading towards dementia?
Anyhow, you CANNOT be forced to care, to even lift a finger to help your wife.
My disabled mum always had an endless list of jobs for me. On the verge of a breakdown, I had some counselling. The counsellor told me to be proud of what I did, not guilty about what I didn’t. He suggested that with an endless list of jobs, I chose what I’d do, and I’d do it at the speed I was comfortable with. When, inevitably, another came along before it was finished, I just said “You asked me to do this, and I want to get it done for you before I start anything else”. So I didn’t actually say no at all!
I’m sure you are exhausted. Do you have a dishwasher and tumble dryer? Domestic help?
Even if your wife won’t agree to a Needs Assessment from Social Services, you are still entitled to a Carers Assessment, to look at whether they can offer you any help in your caring role.
Time off would be a key part of this I think, to escape the nagging.
My Mum and Dad would not recognise the term “carer” for them this is just what a dutiful child does! I think this is pretty common.
However, the important thing is that YOU recognise that you are a carer, this is the start for you getting some help and making things better. It took me a long time to recognise this for myself.
Definitely make a list of all that you do. This is a really good starting point for helping your wife recognise all that you do and also forms the basis for getting some help through a needs assessment from your local authority.
Best of luck with making the situation better. You really don’t have to do it all.
When a spouse becomes ill, one person is left
!. To do all the jobs they usually did
2. To do all the jobs the partner usually did
There are 168 hours a week, which splits into FOUR members of staff doing 42 hours!
(If someone is making a lot of mess/laundry, you could even argue that a seventh member of staff is needed to deal with that!!)
The ONLY way this works long term is if the caree recognises this, and you both accept that you can only survive long term if you make everything in the home as streamlined as possible and get as much extra help as possible into the home.
The alternative is residential care!
That is very perceptive of you , Bowling Bun. It was the caree’s sister who did a lot of research and concluded that something termed Parkinson’s dementia was already there. It is not a 24/7 condition - just “episodes” , most of which consist of making false accusations , stating you said something which you did not and the odd hallucination. The caree is an intelligent women and has always had plenty to say.
I am fortunate in having a washing machine ( used by me every day ) and a tumble dryer plus an excellent cleaner one morning a week but am two months from hitting 83 and after starting 24/7 caring reasonably fit, I know that , even with the aids mentioned , physical health and mental stability are now at a much lower level. It has taken 9 months and the intervention of my sister-in law to obtain true respite of 3 hours a month – will try for more !!
Yes, a carer must believe that he/ she is of value and , without calling oneself a saint, I must keep in mind that I, like all of you, was not elected to the position , nor ordered into it nor paid to take it. We were there and stepped up voluntarily. I am certainly not a saint - my anger is way over the top and expressed every day but I know a lid is needed and I never forget that I must support the caree AT HOME ( I am often accused of deviously planning to push her into a residential home .)
To all of you who have taken time and trouble to submit posts, my gratitude. Not only for the good advice but strengthening me with the knowledge that there are others who recognise what I am going through and show me their wish to give support. This forum can be a Godsend.
Gratitude you say…
My pleasure I say…
Joes,
The dementia associated with Parkinsons is called Lewy Bodies dementia. My grandmother and both her sisters had it, so I’ve got my fingers crossed that I don’t get it too.
One of our members here, Pet, had a husband with the same condition.
Please don’t say to your wife “I’ll never put you in a home” but instead “I’ll care for as long as I can”.
You should be getting much more help. When did Social Services last do a Needs Assessment for your wife, and Carers Assessment for you? The Needs assessment is not supposed to be looking at the support you need, but the support your wife needs, which should NOT take into consideration any help she is getting at the moment, and that includes you!
It’s time you asked for a new Needs Assessment, make sure you get a WRITTEN copy.
Joe’s, and BB
My husband had vascular dementia, caused by strokes. However one of the residents in the nursing home had Parkinson/ Lewy body dementia. She suffered with hallucinations, and her husband had to cope with accusations. Having said that, so did I on occasions. I had cope with confabulations from him. All of the dementia’s are heartbreaking,as you both know, and each individual is different.and similar in other ways.
I agree BB, never promise a loved one that they will never go into a home. It’s a promise that can’t always be kept, and adds to the distress and guilt of the carer, even though needs take over wants. Fortunately (?) hubby didn’t understand he was in a nursing home,
Joe, you do need more help, and sadly your wife and yourself will get to the point that more support will be needed.
Joes,
if you are feeling yourself get angry - that’s an indicator that you desperately need more 'time off." I’m a very patient person (or so others tell me!) but when I’m tired and pushed to the limit by my caree I feel less patient than I would like when he is more ‘tricky’ than usual over a prolonged period or he is on holiday and we are together 24/7 - I feel myself getting irritated and cross and no I wouldn’t if I had a break.
Make sure when she/ you are being assessed (Needs assessment/ Carer’s Assessment) for help etc that you always depict the worst days so the assessor knows how bad it can get.
Melly1
I can cope with most things if I’ve had a good night’s sleep, but can be very “snappy” with the family if I’m worn out. Tiredness is my biggest enemy, especially after major surgery.
My son with learning disabilities was brain damaged at birth, unbeknown to me the midwife was unqualified without supervision. Nothing on the notes for 3 hours meant he couldn’t have any compensation.
When he’s winding me up wanting to do things when I don’t have a drop of energy left, I have to remind myself that we both have a life sentence. It’s not fair on him to get cross with him as it’s not his fault. I lost my temper about 18 months ago over a trivial thing and felt very ashamed afterwards, and apologised. That year I cared for him for 87 days thanks to Social Services inability to organise anything properly, I’m not supposed to care for anyone ever again according to my consultant.
So if you feel you are losing it, take a step back, think about what’s going on. Don’t get cross with your caree, get cross with Social Services, ring THEM up when you are feeling angry, and tell them you just can’t go on without more help. They will take much more notice of you that way.
Some final words from me who is feeling really comforted by the advice and support he has had .
I have returned to the list and each time I think it is finished and have to go off to perform a task, I come back to add more that has just come to mind . The caree will eventually see it all right.
quite right about THE promise : in fact, I have always entered the caveat that it is provided I am still around fit enough to be a carer.
I respect what you say , Bowling Bun, but you are introducing another subject. The caree has had an assessment and it is felt she does receive proper support – I do not castigate Social Services who are way overstretched and underfunded in my neck of the woods . My issue is RESPITE – I would take on half a dozen extra tasks to gain more of this. The caree has Attendance Allowance , which could go towards paid sitters plus three female friends who have offered to sit but no dice. So no additional respite to my three current hours. Two professionals have told me respite is vital for me – so just walk out for a day. But no way can I risk leaving a Parkinson 's sufferer for that length of time.
I know in my bones that every member of this forum realises just how complicated the caree- carer relationship can be. At the risk of over - simplifying it , is not the most critical factor that an unfit carer will almost inevitably lead to the end of .in-home care ?
Goodbye to what is a great group of fellow - carers.
All the best!
Joes, I have 40+ years of caring and dealing with Social Services, as an employee, a volunteer, and most importantly, a carer for a total of 10 carees.
I also have a degree in Business Studies, with a high Law content.
I only have my son, aged 41, brain damaged at birth, to care for now. He lives 15 miles away, but comes home regularly. I may not be a “hands on” carer all the time, but he relies on me for all sorts of things.
I am on the forum to try to help others make the same mistakes I did. I have wasted a lot of time and energy in the past, and I’m here to help others get what they need as quickly and easily as possible. Services to the elderly and disabled are provided by Social Services.
What they have to do is comply with the provisions of the 2014 Care Act. It’s not a take away menu, if it says they have to do certain things, then that’s what they should be doing.
They have a duty to organise their resources efficiently and effectively in order to do so. If they say that they are “over stretched” that’s just an attempt for them to save money by getting your pity, at the expense of your life. You and your parents have paid into the system that pays their wages. You are not asking for a favour, you are asking them to do what they are paid to do.
A Needs Assessment is NOT supposed to take into consideration anything is doing for a caree. It is supposed to be “stand alone”.
From what you describe, you are expected to do lots of things someone else is supposed to be helping with, someone arranged by Social Services. Have you seen mum’s last Needs Assessment? Was it in writing?
I don’t mind betting that mum told the assessor that she didn’t need help “because my son does …”
It’s up to you now.
Either you check the Needs Assessment is written properly, and takes into consideration all the help mum needs, or you ask them to do a new one, properly.
Either you check your Carers Assessment (if you ever had one) and check that similarly, ensuring that it includes some weeks respite, or you ask them to do a new one.
There is no other way.