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I'm new to the forum and wished I'd found it a long time ago! I have already found lots of useful advice that would have been really helpful 2 years ago as it can be a lonely and difficult journey sorting out the best ways to get help for someone you care for.
I care for my elderly father who has Dementia with Lewy bodies. Apart from the practicalities of caring for him and organising his home and appointments etc,the biggest change to my life seems to have been the huge range of uncomfortable emotions that I deal with on a daily basis. I sometimes feel as if that is the biggest burden. How has anyone else dealt with this? I feel like I almost need a mantra to soothe my nagging brain! I have had to coach my lovely supportive husband to say reassuring things when I'm feeling distressed about my dad and even though I know I've scripted the responses myself it seems to work. How daft is that?
Anyhow, it has been wonderful to read through the posts on here and to see how utterly gorgeous humans are when others are having a c*** time!
Hi Julie, welcome to the forum.
Can I ask when dad last had a Social Services Needs Assessment, and you, a Carers Assessment. What help does he currently need with his personal care? Are you getting any help at all.
Long term caring creates all sorts of conflicting emotions. I often think "it shouldn't be like this".
Have you had any counselling? It made a huge difference for me.
I know it's horrible to think about, but maybe this is the time to decide where you draw the line as far as care is concerned, and what you will do when it gets too much for you? If you research what is available in your area, you can develop a plan. For example, if you would manage better if you had regular breaks, find out if any of your local homes do day or respite care.
Work out what you struggle with most, and share it here with us. The chances are someone else will have met the same problem already.
Is dad claiming Attendance Allowance? Exemption from Council Tax due to "severe mental impairment"? Think about how to reduce the work created as much as possible, i.e. a tumble dryer, a dishwasher. Graduallly reduce the amount of "stuff" to minimise cleaning and dusting. Even wearing polo shirts rather than shirts that need ironing. As they say on TV "Every little helps"!
Re dusting. Close the doors in as many unused rooms as possible. The rooms may get stuffy but as
no one is in them it doesn't matter. I don't dust the rest of our house as we used to anyway...... helps make our old cottage look more antique! :)

I no longer use any lace up shoes for me or the wifey, just pull ons. It just a tiny bit less bother and all
helps me. As far as gardening is concerned I just run over the weeds with a strimmer. I no longer have time for digging them up.
Microwave dishes are a God send too. Reduces washing up ! I have considered using throw away plates but haven't sunk to that.....yet! :)
The dust will all still be there when we are gone. The duster only moves it about anyway! But, I do still dust, but only when I see it !!! :huh:
Conflicting emotions are very, very common, and can be quite 'tormenting' too, alas.

With my MIL, now in a home with advanced dementia and still 'going strong' (well not strong, but definitely still going) at 93, first became in need of care, I found it incredibly difficult, I freely confess. All sorts of very 'negative' thoughts preoccupied me, and I was very angry about it all - furious that it had descened on ME. It all seemed so totally pointless for her to have dementia and to be so dependent on me. I was very negative, very hostile.

And yet she'd been an excellent MIL, I couldn't fault her! So then I felt guilty about being so angry and hostile to having to look after her, the appaling 'take over' of my own life just to keep her going, etc etc.

I wasn't very nice about it AT ALL. I deeply, deeply resented it....

I have so say, sadly, that since she has gone into residential care the 'burden' has lifted almost totally now. As she has worsened, I now don't even have to feel guilty about 'dumping' her - at first she did not want to be in residential care, she wanted to live with me (poor lady) (I am widowed - it was just ME to give up my life for her). But now the poor soul does not really know where she is, and the carers ain the home are lovely to her. Now I just visit - but I also know she forget me as soon as I leave the room, and in a way that is a comfort.

But there are still 'dark emotions' swirling around, I know - the fundamental one of which is that it is just so pointless that she is still alive, at 93, in such a grim, hopeless state, having such a dismally low quality of life. If she could see herself, know that this was to be her fate, she'd have been horrified and appalled.

So, all of this is to say please don't be alarmed by any 'dark emotions' you may be experiencing. They are normal, and in a way, I would argue they are the 'right' emotions to feel. NONE of us should end up with dementia in such a sorry state - of course we are angry - angry for them, and for us. It shouldn't be happening.....
Thank you to everyone that replied to my comment in August. I went back to work in September and time became rationed! Those kind words from people who understand meant a lot to me.
Bowlingbun, I have a good package of care for my dad. I don't live with him but visit almost every day. As far as social care assessments, attendance allowance and council tax etc I managed to sort all of that when it became clear my dad wasn't managing. (My concern is that whereas I am lucky in that I'm used to dealing with a range of people in my job and was perfectly capable of organising it all through research and a million phone calls, what happens to those carers who don't know where to turn or who don't have skills to manage the internet or make phone calls?)
I finally got a carers assessment after referrals by 3 different agencies over 18 months by which time I had done all of the things they then suggested! I have been offered counselling which I am on the waiting list for.
Jenny Lucas, it is reassuring to know that these horrible feelings I have are normal. Talking to other people who understand those feelings seems to be the best way to deal with them perhaps? I would find it hard to admit to someone who hasn't had the same experience that I sometimes wish something would put my poor dad out of his misery.
Of course as you will all know, having a package of care is never the end. I was asked at the weekend if I could cover one of the shifts because the care provider didn't have enough staff! Can't believe that. And of course I did it because I wouldn't leave my vulnerable dad without a meal or personal care. I have also just won a battle with the local authority to keep my dad's current providers rather than swap to the authority's new providers because the change would be detrimental to my dad's health. It doesn't ever end!
I feel sorry that I never understood how huge this silent army of carers really is. :roll:
I'm glad things seem a little easier.

Oh yes, the 'silent army' of carers is invaluable, no doubt about that! The trouble is, as you have found, even with 'outside help and care' we never really go 'off duty'.

Even me, with my MIL in a care home, and still 'on duty' in a sense, as any moment the phone could ring, telling me she's had a stroke, been hospitalised, whatever whatever. And yes, I'm 'on duty' when I go and visit and so on.

I know I won't go 'off duty' until her funeral.....that's the brute truth of it all.

And yet, even I, as only her DIL, will be sad when that happens. because what we really WANT for our elders is simply for them not to NEED the care they do. Our stress is not about THEM, it's about CARING for them.

Sometimes we have to work hard to remember that, because the 'caring stress' takes over, and crushes anything else we used to feel for them, and about them.
Hi Julie,

Glad to hear you are back at work and that there is some support for dad. I too combined caring for mum with a full-time job and found it exhausting. I never found as if I was good enough, I didn't concentrate enough at work because I was thinking about mum and vice versa! As you rightly say, how other carers manage without any resources is beyond me. I think there are a huge number of people we know nothing about because they are caring for loved ones and therefore don't consider themselves as carers. I certainly didn't for a very long time.

As for the emotions, that is the most difficult part, I think. Whatever caring situation you are in, most of us have felt out of our depth, guilty, resentful, exhausted, sometimes all at the same time. I think the key is recognising when those emotions get out of hand. If you can get away, I found doing something physical helpful, swimming, walking or yoga in my case as it tended to c lear the head and let me think more clearly.

My only advice in caring for someone with dementia (Mum had Alzheimers and vascular) is to enjoy the good days which there will be. Seize the moment, if you like. Also, outsource as much as you possibly can - cleaning, online shopping, gardening, whatever saves you time. I also used a dementia befriending service (from Age UK) to visit mum once a week. Mum wasn't keen but at least I knew she was safe for that couple of hours.

If you have time, come and join us on Roll Call where we chat about our everyday lives. Different caring situations but we all try to support each other the best we can.

Take care, Anne