Hi all, had a good week on 15mg, age lines going from face so had a nice free facelift.
Cut down to 14.5mg today and mild GCA but going to see if any better tomorrow. I think Aunty started it off on Sunday after noon when I went, she was not good.
Shouting at me, confused, I did stay for 2 hrs but before I went I got her tucked up in bed. Next thing I went out the door, she jumped out of bed, and shouting and running on her frame she coming with me.
I had to get the nurse to take her back, I can't handle much more of this as she gets me so stressed out but not her fault ( 97)
Does anyone think because of this stress this is why I am getting my GCA back even though I had to double up ???
I am actually crying writing this as I don't think I will ever get better and go into remission, I am just so fed up with it all.
I feel like I am in a dark place again and pretty sure it's because of my Auntys actions, it's not her fault.
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Margaret1951
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I do realise you feel a duty to look after auntie - but you have a serious systemic illness that is not helped by stress. No, it isn't her fault - but neither is it helping you get better either, And if you don't recover - you won't be able to offer any help.
Explain to the nurses that you can't cope with this - I'm assuming she is in a residential facility?
Yes Aunty is in the Bupa nursing home 10 mins from me, I have decided I am not going again until Thursday then I will have a word with them as to how it is affecting me.
I used to go every day but it got to much for me health wise , I love her to bits but she knows how to play me.
My PMR has not flared up thank goodness this GCA is horrible what we have.
I think you are right to try and take some time for yourself and please do guilt free rest. If she was fully herself I am sure she would be supportive of you. I tend to try and organise my days as one on and one off. Will add another day to Rota when I feel up to it. 🌻
That's what made me join this group. the support. saying things that you can't to those close or otherwise because they don't understand. pLease do what you can and no more. Better to spend time with family like that when you feel a bit better not when it's driven you in to ground. I only had one 22years neice for one night but the preparation and not being able to go to bed as early as I want was knackering. That's one responsibility and I was in bits. So I basically slept yesterday.
My mother was in a nursing home with dementia and for the first year I visited every day, and it always left me stressed. When I went for my annual check up my doc commented "your blood pressure is high..what are you doing differently". When I explained about the stress I felt after every visit, he said to me that he was prescribing that I visit only once or twice a week from now on. And it was OK because she wouldn't remember anyhow. Well she was in the facility for 5 years until she passed away at 96 years. Eight months later I was diagnosed with GCA! Hm-m-m , cause and effect??
Take care of yourself ....and do what you can with no guilt about your aunt.
It's only this last couple of weeks she has got worse like this. Trouble is we both clash and honest with each other, I am the only one who argues with her as I can't help it.
She does know what she is doing and tries to make me feel guilty and she does succeed.
But I am taking all the advice from my family on here now and make myself better.
From your original statement it does sound like aunt has dementia, and even people with this affliction can know what they are doing and be manipulative. But their behavior is socially unacceptable. It does not improve. I always left the nursing homein tears and went right to eat a chocolate bar to feel happier! This stress will definitely affect your health and no matter how much you care for her, she does not have the right to destroy your health. Be strong and it is ok to put yourself and your needs first. It is not selfish...it is smart. Wishing you the best!
If she knows what she is doing even within the frame of dementia then she is manipulating you for her own entertainment. If you play her game she will continue to do it. Just say no.
Hi PMRpro, you are all so right, I needed to hear all this. Tomorrow when I see her I shall first of all tell her I can only stay an hour, then tell her last Sunday set my GCA with the way she was with me. She knows I have these and understands what they are ! So far this morning GCA ok so just going to rest today.
I will be surprised if she is understanding about your stress. Remember that dementia patients exhibit socially inappropriate behavior. My suggestion is to just spend the hour and leave. Be the one in charge here. I learned this the hard way!
I will Ginny, ( hope ) I think if Aunty was not here I would start and slowly get better, but when she does go heaven it is going to hit me like a ton of bricks and I hope my GCA and PMR does not get bad 🙁
It's a conflict of emotions, isn't it .. feeling duty-bound to visit out of a mixture of love and 'doing the right thing' and being greeted with aggression which makes you wonder why you bothered ! I cared for two aunts at home with dementia, one was an angel who lived in a dream world of yesteryear and just needed love and hugs, the other a complete nightmare who wrecked rooms, threw cigarette ends at me, ran away in nightdresses and told everyone no-one fed her ... They eventually went into a home, and two years after they died I was diagnosed with PMR. Stress? You bet.
Get rid of guilt, easier said than done, but my mistake was to think I was indispensable to their well-being. Your aunt is looked after and probably can't get away with behaviour that she shows towards you - don't put yourself in the firing line (at least, not so often). Your life needs looking after too, enjoy your dogs and some time to be calm. Good luck x
Hi slowdown, you sure had it rough with your 2 aunts ! You are right with all the emotions we get with them. Yesterday I was in a dark place with it all my emotions were everywhere, I gave up hope that I was never going to get any better.
Thought I was going to die before my Aunty after what she was doing to me Sunday, I even asked God to let her go in peace.
So far this morning I feel a lot better, thanks to my family on here, but still tearful.
Gosh me too. When my mum was finally in a nursing home she would cuddle the staff and ostentatiously ignore me until she finally forgot who I was. There was an upsetting slyness about the early behaviours. I can hardly walk past the Care Home ( 5 minutes from my home) now, she passed away in 2013. Depression and then PMR. 7 years of care! More of desperate worry.
Ration your visits Margaret she lives and responds very much in the minute, you won't hurt her. Look after you and build in little rewards for yourself. It's thankless but duty calls, I know.
Hi Sheffield Jane, I thought I was on my own in this predicament ! You are all helping me so much now, Aunty been in home since October after being near to death in hospital before I got her in by me here.
I often wonder if I did the right thing having her near me, when I think about it now she did do a crafty one on me. She had the solicitor in and gave me power of attorney, but whatever she needs I buy her.
You have gone through the mill also , why do they do this knowing we are not well. I never want to go through this if my time is like hers. X
No, not alone Margaret, there is an enormous group of people our age sandwiched between elderly relatives with dementia or otherwise unable to look after themselves and their children and grandchildren's perceived needs. I have been very lucky in a way - our mothers were both 80ish when they had speedy and peaceful deaths having been fit and well until a few days before. Our fathers died when we were still children. But I know how some of my friends really struggle and deprive themselves. And there have been several on the forums who drive halfway round the country to relatives who refuse point blank to move somewhere sensible or into a home while their GCA/PMR is ravaging them.
I don't want to live forever - I want to live as my mother did - independent and responsible for the running of a court WRVS coffee bar until the day she died at 79.
Hi Pmrpro, I agree we do not want to suffer like some do. If I get that I cannot look after myself I shall know the time is right. It must be terrible when their dignity is taken away after a life of working hard and looking after others without a moan in sight.
I lost my mother in hospital, 10 years ago, she went in with pains in her heart, they checked her everywhere and nothing so kept her in overnight.
She never came out again ! She just deteriorated and to this day I have never got over what a crap hospital and staff did to her. Yet the same hospital saved my life 50 years ago.
I think her mind was going also as at times she was like a small child how she acted so perhaps it was meant to be without suffering to much.
Many emotions rise as I read the stories you have shared. The only bit I can add is regarding the feeling of Guilt.
Guilt has been taught and nurtured as a control element and is supremely effective at manipulating our behaviors, beginning as children... remember the phrases "Shame on you"..."don't be selfish/stingy", etc.
We were taught to be selfless and giving, learning to take care of others with little (if any) permission to care for our own needs (ever).
As adults, those lessons leave us without boundaries, with no protection against demands of others, even when those demands are unhealthy and damaging to us. We remember those old lessons...don't be selfish.... and feel shame for wishing we could walk away.
The end result can be paralyzing, we can't stop even when we can't go on.
Remember the directives of flight attendants, to put the oxygen mask on yourself before you try to put it on another. Simply put, if you don't care for yourself, you will become unable to care for anyone else!
You have hit the nail on the head, my mum brought all 5 of us up on her own (my dad left her when I was 6 years old ) mum always told us she could take us anywhere and was proud of herself the way she did it.
We rarely got told off because she drummed into us how to respect our elders. As you say we don't forget these things and I would not want to .
When I lost my mum my aunt became a second mother to me and helped me through it all, I could never forget the support she gave me, ( crying here again as I miss my mum ) this is why I feel I owe her big time.
Yes she manipulates me and I do try to ignore this but very hard.
She tells all that I am her daughter ( she has no children) and this makes it hard for me also. I suppose all in all I am just a weak person .
Thinking about tomorrow's visit my head started again after lunch and I just want to get better and get on track again.
Will update tomorrow And hope I can be strong again. X
Margaret, our are not a weak person. You are a kind generous and loving person, who treats your auntie as you want to be treated...
unfortunately, auntie is unwilling ...or unable...to return that loving care...thus her behavior has become abusive toward you. This is not your fault!! You have done nothing to cause this treatment!
you may choose to continue your generous unconditional caregiving , or you may choose to withdraw just a bit of that generosity and use it to take care of yourself. That is a perfectly kind decision that you can make for your own wellbeing.
No one expects you to leave aunties presence in tears because she is abusing you.
Thank you Jerri, I have to start withdrawing now as I am at my wits end of this rotten GCA flaring up all the time because of the situation. Thank you x
No, Margaret - definitely NOT weak. Perhaps it isn't her fault - but there is no reason for you to suffer in silence which will just end up making you ill. Then you won't be able to visit her at all. She is like the Old Man of the Sea - and if she sucks the life out of you she has won. Not sure if Sinbad's technique would work though. But do talk to the nurses about how to manage her.
Hi pmrpo, the nurses have told me she is being looked after and not to worry, they know about my health issues and have actually told me to visit less.
They are so good up there with her and have told me her age now is expected. She looks like a skeleton and you can see every bone in her body and is tiny, but very very head strong. Do you know , every time I leave she actually thanks me for going and everything I do while there, strange.Fingers crossed tomorrow x
My MIL and I never got on for all sorts of reasons but I had her to live with us when it was obvious she couldn't manage alone in the house any more. Not "with" us, we turned 2 ground floor rooms into a tiny flat. Having her in our part f the house would resulted in murder...
But she too told everyone how wonderful I was - they do appreciate what we do, however cantankerous they may be.
See - I think she may improve if she sees you less. It could be disturbing for her. They obviously have lovely staff - who look after the family too.
You've had some really great replies which I'm sure have really helped- you just now need to put into practice what is right, first and foremost for you, at this time, not Aunty, not false guilt connected to Aunty, but what is right for you so that you can show some love and appreciation to Aunty; not because she demands it but you truly want to give it. That's a stress reliever too that you are not acting out of guilt and pressure but out of love. I can understand your disappointment of having to go up with Pred and that is why all of us need to be sensible in what we do and for how long,in order to do our part to get well. I would, like others, suggest limiting your time with Aunty: go when it suits you, say once a week, perhaps changing the days so that again you are in control and not Aunty. If the visit is stressful for whatever reason- leave early. I can have, and have had in the past similar episodes with my mum( aged 91 - soon to be 92) . I don't bother explaining my condition- I just do what I can when I can. Sometimes it has all gone spectacularly wrong- one case in point where she wouldn't speak to me etc etc which was very hard. It's us, I believe that have to change in our approach but the person reliant on us doesn't like it and so that brings its own problems - it's all part of the learning process I believe for us to know our own limitations, practice self care,not be manipulated , not to give in to false guilt and remain loving at the same time( a bit like disciplining children!) Not an easy process at all but we'll all get there- part of the journey!!
Thank you jackoh, I am so sorry to hear you have problems with your mother, bless you. You all have given me hope on here and I thank you all from the bottom of my heart for all the advice. I cannot talk to anyone else as I just break down in tears, I never used to be this bad it's just that upping preds again makes me so tearful. Thank you x
Margaret, tears are our way of washing out old (and maybe new) emotional wounds . They are not weakness but strength-giving as they allow us to proceed with life's stressors.
Our tears have been used against us, called weakness, manipulation, and a plethora of other negative terms.
I call them water for my soul...wonderful and healing 🌸🌺🌹
I would avoid visiting in the evening, my experience of dementia patients is they are often more confused as the day wears on. Rather than confront my father in law I would just let him talk and remininsce, if things were getting awkward you can always slip away at lunch time. Concentrate on building up good communication with the staff, then you can put a face to a name when you telephone rather than visit. The most important thing is you are able to act as an advocate for your aunt. This is a really tough time in your life, and you really do need to look after yourself.
Thank you Sally , I go at 12ish and have my dinner with Aunty in her room ( the chef does me a dinner also ) then I leave around 2.30 but I tell Aunty I have been there for 3 hours ( god forgive me for lying ) I have now decided after today's advice I am cutting down to twice a week at first. The day nurse phoned me yesterday afternoon to tell me Aunty had a fall but she was ok !! So she will tell me tomorrow about it and put it on more ! Thank you again x
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