THE DEFAULT CARER - when no one listens

Do get a Carers assessment, Hope!

I looked after my elderly mother who, unsurprisingly, gradually went downhill both physically and mentally and I found it increasingly stressful, not least because I was the family breadwinner and self-employed with an office at home. I hadn't realised how stressed I was becoming until I visited my GP about a completely unrelated matter. She dealt with whatever it was (I can't remember now) and then, with great kindness, pointed out that I was shaking and had lost a lot of weight and asked what was wrong. To my great surprise and considerable embarrassment, I burst into tears and poured out all my concerns about caring for my Mum, the constant interruptions to my work and to my sleep and so on and so on. She immediately arranged for carers to come in and take off some of the pressure – getting her washed and dressed, which sometimes would take me as long as one and half hours, washing her hair, getting her breakfast and sundry other assistance. It made a huge difference and even now, long after my beloved Mum died, I remember both of the carers with immense gratitude and affection.

I would suggest that you see your GP and explain how stressed and distressed you are and I hope you get the same kind of response that I did.

Start the day with a smile - I always say!

The more I read what you are all so kindly saying, the more I realise how shabbily we have been treated. Although we have both owned our own homes in the past, we are now in the situation that we rent privately.

We have a lovely bungalow in a beautiful village full of super, caring people. It is a vibrant village with so much going on. I think the bungalow was a project as it has a super conservatory which leads into the best kitchen I have ever had... but then I think someone ran out of money as the bathroom is 40 years old and very tired... yawn...

We are currently negotiating with our landlord and a local charity to get a bit of an upgrade on the bathroom so that will help significantly, if we can pull it off

So, lots really to be thankful for - and of course, my two grandchildren,which is why I am on this site to begin with. My beautiful daughter came to us as a 4 month old fostering placement, and bless her, the two weeks she was placed with us, has now stretched to almost 39 years - she knows when she is on to a good thing My then husband and myself were lucky enough to be able to adopt her when she was two and a half, and to my great joy she and her husband have given me two glorious grandchildren.

I have two sons I have given birth to, who love their sister completely. My daughter has a full blood sister who was adopted elsewhere, and they found each other a number of years ago. At my daughter's wedding, my eldest son, said to the sister that he couldn't get his head around the fact that..
" My sister, has a sister, who isn't my sister!"

We are a happy family, my kids help as much as they can, but they have their own lives, work, and one lives 419.2 miles away ( as it says on a cushion he bought me!) in Scotland.

My grandkids might not be of my blood or genes, but they are mine and a constant joy whenever I can get to see them, which is not often enough because of the distances involved, but love them to bits as we all do .

onward ever onward, today I am doing battle with the care agency, so they had better watch out!

Good for you HeyHo you sound like a lovely person.

Get up and at'em! Gird your loins and into battle [???

Your life sounds quite inspirational HeyHo and well done for getting up with a smile I have been thinking about your situation and similar ones and I hope these thought help.

1. Rules: Caring is something the government have turned into a process; they have also have underfunded it. Because of this you have to learn the rules and use them to ensure they know that you know what you should get. Of course you will not have the energy to do this but bit by bit it is possible and sharing on forums helps by saving on research time.
2. Energy. You need to protect your own health (I can hear the hollow laughter from my family in my head while I type this). All illness saps energy and some more than most. My doctor - when I finally went to see him - delighted in telling me that there is a higher incidence of depression among people caring for those with dementia. He thought - and so did I - that I was suffering from anxiety (not merely anxious) but he would take some tests. Two chronic (as in ongoing not dreadful) conditions are now being treated and my energy level is much nearer to normal and I am only anxious in anxiety making situations. I tell you this because you need to go with any little thing and you need R & R (and you should be assisted to get this).
3. Money. You need to get every benefit that may be due to you or your partner. You say your partner gets AA but have you looked at the discounts and exemptions for Council Tax for adults with an enduring mental illness. It is worth applying and then using the extra money to make life just a little easier - and hour of care while you shop, the shopping delivered. You need each and every little bit to be the best for both of you.

I do hope this doesn't sound dictatorial - that wasn't how it was meant but just to support and help. That is where these forums are at their best I have found.

thoughts not thought

GracesGranMK2
Yes, I am understanding all of this ! - it's a long process to get your head around isn't it.

I first started caring in 1982 when I fostered a little girl with spina bifida and since that I have 'cared' for 13 years for James who had cerebral palsy and died aged 13, and my two step children who have ADHD and Aspergers... then the present situation came along and I cannot believe that 35 years after I first started caring NOTHING HAS CHANGED to help the understanding of what carers do....

My escape is my work - I am a professional genealogist, and love it - I am attempting to rebuild my business by working from home, but it is hard because of the constant interruptions caring causes.

I am just typing some notes about a chap who had DAH diagnosed in WWI - Disordered Action of the Heart - now known as Post traumatic Stress - I am sure many of us have this condition.....

Hey HO and off I go again, I am going to immerse myself in the past again and see where my journey takes me today - I love being a time traveller

I did it Kitty. Called this afternoon. All I had to do was fill a form in online. Not sure if it will be any good to me but anyway we shall see

I do often wonder whether people who say we should all look after our own, have ever had to look after anyone with dementia 24/7. If you haven't, it's almost impossible to understand just how stressful and exhausting it can be. So often it is NOT just a case of the person gently getting ever more forgetful. I know we didn't have a clue when we blithely embarked on it with my FiL. (I say 'we' but it was mostly me, since Dh was working long hours and away a lot on top).

Nearly everyone I have ever heard of who finally takes the care home decision has done their valiant best to care beforehand, often for a long time, until they were on their knees with exhaustion. Often it's the lack of sleep that's the final killer - someone up and down half the night, waking everybody up, like my FiL.

OP, I know it can be particularly hard when you live with the person - social services know you are there on the spot and are not going to move out, so there is far less pressure (as they see it) to help (spend money).

I know of someone who became so desperate that she told SS that if they did not do something NOW she was going to take her relative to A & E and leave him/her there. It worked, but it's awful that anyone should have to go to such lengths.

Both my FiL and my mother had dementia so it was with us for many years, though after the experience with my FiL I did not have my mother to live with us - I just could not go through that again. We supported her at home as best we could until she was no longer safe to be left at all, when it was time for a (very good) care home. I often found the Alz. Society Talking Point forum very helpful - whatever you are going through, someone else will have been there and there are often helpful suggestions.

I know it's drastic, but if you were to book some time away, and inform SS that your partner is 'vulnerable' and 'at risk' they will have a duty to put care in place.

As others have said, Age U.K. and Admiral nurses can be extremely helpful.

I think there are many reasons why people come out with thoughtless opinions Witzend but in my experience the biggest one is that people do not understand dementia. Sadly more and more are having to learn about it. Caring for my mother is not 24/7 for me and I have absolutely no idea how anyone can do that - they are heroes!

It is such a difficult illness and some of the people who should have knowledge, professional carers, doctors and nurses, just don't although each one that does is worth their weight in gold bars It is also not treated by some (many) health care professionals as equal to an equivalent physical health challenge but then, mental health in general is in that position.

I think it is very unkind it people boost their own sense of virtue by saying 'this is what we did, it was wonderful and everyone should do the same because it is the right thing to do'. It is just an ignorance of the circumstances that now affect so many families.

From experience and anecdotally, GracesGran, , it's not just the general public who don't understand it. Professionals are not by any means guaranteed to either, though they may think they do.

I have heard more times than I care to remember of (e.g.) social workers or GPs saying (for example), 'Well, if she can't remember to take her medication, all you have to do is write it down for her.'
As if you were too unbelievably thick to think of such a thing - no conception of the practical realities, I.e. that the person will more than likely a) forget to look at what you've written, and b) even if they do, will forget what it said almost as soon as they've turned their eyes away.

I know we had to learn this sort of thing the hard way, but I do think the likes of SWs and GPs should understand the realities.

I had a ding dong going on once with my foster son, who had cerebral palsy. County Hall wanted to send the taxi to take him to school at some ungodly time like 7.00am - bearing in mind everything I had to do for him to get him into the 'ready for school' situation - AND that I had 3 other children to see to in the mornings as well.
My answer was to issue a challenge publically to the Head of School Transport - I invited him to come to my home and do what I did JUST FOR ONE MORNING and if he could do it, then so would I, and we would be ready for 7am.

needless to say, he politely declined - but I did get the timings changed to suit me !! One up for me!

Witzend I have had the writing down bit too! Mum doesn't recognise the joggers that used to work but, of course, we need to be told.

The knowledge is so varied and the attitude of the 'professionals' is so often about the physical issues regardless of the dementia related ones and yet mum's cleaner, who has worked with people with special needs, is brilliant.

Bravo HeyHo re the collection time. I know people don't think about these things but surely some training should be put in place. I would just like training for the carers. I couldn't manage without them as I can't get to mum early enough in the morning but they are very varied in their knowledge and that must be difficult for them too.

I find that all the organisation is a nightmare. I went to our local Carers people and chatted with the lady there. I am sure the women was an ex SW as she was sweetness itself but not helpful. The best she could do is tell me that when dementia patients are as old as mum things usually happen very quickly. I love my mum and don't want to be told that!

Nice to rant though

Witzend and GracesGranMK2

PROFESSIONALS, SOCIAL WORKERS ETC ETC ETC.

In my head they are like the mid wife who instructs you how to give birth, you know the one we all do, the one who has never had children herself! It's OK for the professionals to come across all sympathetic and caring - when they go home to their nice lives and have a 9-5 job with errrrrmmm those things called HOLIDAYS.

Oh, another bit of a rant. I had the care plan today for my dear other half's swimming and sauna sessions... I thought it all appeared a bit weird until I realised they had typed it backwards in time. So he started off by getting dressed, then he worked his way backwards through the session and concluded the outing by getting undressed...I hope they don't intend bringing him home undressed :-) Ain't life fun - do excuse me ladies and gents, it is almost 11pm and 'dear other half' wants me to re attach his stoma bag, this is how I always dreampt of spending my Saturday nights ! night night all xx

Your bit about the cleaner struck a chord, GG. My mother had a cleaning lady who'd been with her since pre dementia - she was fantastic - I honestly don't know what we'd have done without her.
My mother had left her some money in her will, but since the CL wasn't young and not in the best of health herself, we decided to,pass it on after my mother finally moved to her care home, so as to be sure she'd have time to enjoy it.

My mother lasted very nearly 8 years in the CH - was 97 when she died, and poor
CL has been seriously ill recently - we still keep in touch - so I'm really glad we did that.

Tra la la - great start to the week!!

Woke full of positivity today - bad move -

Breakfast, coffee to himself, shower, dressed, he goes into bathroom......

If you have never seen or had to deal with an ileostomy, then read no further......

He goes into bedroom to get dressed - shouts for me - bag is leaking ( to those who do not now, its poo) All over dressing gown, underpants - oh, bloody hell - how DO I Arrange this 6'2" chap so I can deal with it....

Oh well, job done, laundry going on, peace restored, but my mind not...... there has to be an easier way... roll on Friday when I go to see the doc.

PS it's raining, but I don't mind that, in fact, I love it!!

I am wondering if you should just get in touch with your MP so he can chase the council to provide some care. Sadly I think the powers that be will let this continue unless you bring some pressure on them.

I wish we could be of some real help but there are people here to listen and understand as far as we can.

The biggest problem is that my other half does not think he needs any help, does not think that the dementia affects him in any way at all. He does not even think that I am his carer.

it was suggested that he went into residential care when he came out of hospital, and he said 'absolutely not!'

This is what I am having trouble getting my head around - he thinks he is fine, but when I outline what's going on to other people they think he is not fine. I feel as though I am betraying him!

Ann60 on the soop's kitchen thread has a husband who also doesn't believe there is anything wrong with him.

The Carer's course I help on had one lovely lady who told us that when she told her husband that she loved him, he replied 'I love you too, I just wish I knew who you were but we certainly mustn't tell my wife - she wouldn't like it!'