Caring for elderly parents? Drop in for support, hand holding and whatever you need

Hello, tio. I don't have experience of the things you're grappling with, so no useful advice, but can confirm that this is a great place for support and venting.

Checklists v helpful for practical stuff, thanks all.

Yes it's a pretty crappy double-whammy. Initial plan for BC is hormone therapy then some surgery (lump- or mastectomy depending how hormones work) then radiotherapy. But not sure how well hormones working as she is in quite a lot of pain. She has meeting with BC surgeon v soon so will learn more then.

Really not sure that she could cope with surgery though. She has no proper understandingly what's going on at all with either diagnosis. Luckily DF got EPOA some time ago so one thing done from the checklist.

I have a DB who lives 4h drive away. He has a full-on life and hobbies and isn't here often. I have two young kids and my own business, DH works away a lot so it's full/on here too..

DB offers to talk and to help but realistically it's going to be down to me day-to-day so I'll just need to get on with it. Sure I will need to ask for help from friends and this thread seems like a supportive place.

Hello Tio and welcome to our little corner.

What a dreadful double whammy you've been handed, will your DM be having treatment also for the cancer?

Hope that you have some support as well, do you have siblings?

There is an excellent checklist not too many pages back which will help you with the things you need to ask/know.

Apologies for the long post - hope it's ok to join the thread, would really appreciate any advice.

DM (70) has just been diagnosed with Alzheimer's - she has had problems for years and refused to see doctor so it's now fairly advanced.

The consultant confirmed the diagnosis by email to DF but no further info, we (DF and I) will see him tomorrow to discuss more. To make everything more difficult for them both she was diagnosed with breast cancer a couple of weeks earlier.

What do we need to know/ask at the meeting tomorrow? She has had MRI and CAT scans so I guess they have a good picture of the damage already caused. Will they be able to tell us what stage she is at (from online details I'm guessing stage 5/6) and what the prognosis is? Will any treatment make any difference at this stage?

Really no idea where we go from here and what we need to start to think about but obviously things are going to be pretty bad from now on so want to support them both as much as possible

I will cry when my dad goes into residential care. Worse than when my children first went to the childminder or school, more like when I handed them over to anaesthetists for operations. At the same time I will be enormously relieved for my sake and his, that he will finally be safe

I agree with all of the above- when I told dp and dd that my Mum was staying in the home (back in Feb, she went in for a week while my cousin was away) they were more concerned than me. I was relieved. Happy. (obviously and sad at the same time, that that was that, but...) I could sleep again, knowing she was safe, in a bed, and not trying to go down to Asda at midnight with odd shoes on, or banging on her neighbour's door saying there was a circus at the bottom of the garden.

I went to the UK this summer and visited, and yes, it's a nursing home, so there are lots of people wandering round like the living dead. I know she will get to that stage too. But right now, she looks so much better than at Christmas when I last saw her. She's getting 3 meals a day, and stimulation. They go on bus trips to flower shows and she had her nails painted (first time in her life! the hairdresser goes in once a week and a girl does all the ladies' nails and a bit of make up) They were having a fashion show that week, and Mum and some of the others are taken over to the pub over the road on a Sunday afternoon for a glass of sherry.

What I was dreading was that moment of US knowing she had to go into residential, and HER not. Once you get past that, it's like a load has lifted.

to all.

Personally I got to breaking point, and had to force myself to step back a little. For DM she probably hasn't even noticed, but it has probably saved my marriage.

I would also recommend trying out a meditation website - something that was recommeneded to me on this site, 10 mins a day gave me a bit of help as it stopped the constant whirring of thoughts. The one that I used was called headspace, but I'm sure there are loads out there.

Thank you so much @peral and everyone for your thoughts. I can't tell you how much better I feel just for telling someone about it! All our friends obviously have absolutely zero point of reference for this at all, having parents in their 50s and 60s who are perfectly fine. They just don't get it and can't relate at all. Thank you all for sharing and listening! What an amazing bunch of heroes we have here! ❤ Xx

I think we instinctively respond to dementia care in the same way as we responded to our children's needs. We feel that all we have to do is respond to all the demands and there will be some kind of positive outcome, progress or even reward. But dementia is a bottomless pit of need and ultimately deterioration is inevitable whatever we do. That's not to say we have to stop feeling compassion but that it is pointless to be on alert all the time. It won't change the situation and may damage the health and well being of our families.

CDAlady, that is such good advice. It is like putting plasters on a gaping wound. You sort of have to let it bleed out to force the issue. That point when you have to step back and let the crisis happen is the hardest. It often, only then, that the relative will allow themselves to be helped.

I wish there was some way that all the experiences and practical advice on this thread could be condensed into a handbook

Christmas; this is something I found helped me a little- my MIL had Alzheimer's and was cared for by BIL who is a neurologist and therefore knew exactly how the illness progresses. He had total responsibility for her while she was still at home and spent a lot of time driving to and from her house, looking after her and her house and liaising with carers, neighbours, doctors etc. He also had a full time job and family. I told him I feel overwhelmed with adrenaline because I spend so much time dealing with new crises and I worry about what neighbours, doctors think eg. When he doesn't have clean clothes or I have forgotten to renew his prescription... BIL said it's always like this before the inevitable breakdown of homecare and move into residential care and there is no way that anybody can manage it all perfectly. It's not possible. It's in the nature of the condition that this will happen. So, for your own mental health and the well being of your family you have to allow some things to mess up! Eg. Not always, immediately answer phone calls or worry about what friends and neighbours of your DF think of your care.

I understand completely Christmastree! I haven't slept properly since things with my dad kicked off. I feel constantly full of adrenaline. It feels a little like when my first baby was born. A sense of a huge burden being dumped on me and not knowing where to start. In some ways worse than baby blues because I know it won't get better and it's harder to get help. It's such hard work to get help....

Can I ask you how you got a diagnosis for FTD? It's really clear from my dad's behaviour that that is what he has but because his memory isn't too bad and he's quite articulate most people think he's no more than a little confused. This includes medical professionals like his GP and community matron. His behaviour can sound like simple eccentricities. I find it really hard to get across the fact that his behaviours are really really not ok. I keep bombarding social worker, nurse, GP with descriptions of his behaviour but I think they have concluded I am a hysteric.

He has an appointment with a memory clinic next week. He is inclined to tell people that he is fine and coping perfectly ok by himself which is utterly untrue. Without me he would be wandering hungry and naked in the street. I am really worried it will concluded that he's fine and we will get no further help. Is it worth me simply saying I think he has FTD please test him for that specifically?

Hello, please can I join you all? My Dad has frontal lobe dementia. Going downhill rapidly. Have posted on other threads for practical stuff which has been invaluable.

Since it's all started to get serious - in the last six weeks - I've not slept properly. I don't want to go to sleep as I know I'm going to wake up anxious. How frustrating! Does anyone have any ideas on how to 'zone out' of the situation for a while? I'd like my brain to stop whirring, just temporarily.

Hope you all have a good weekend with your M1/3 journeys, teenage taxi runs and trying to keep everyone and everything together. I can't believe I thought I was stretched before this......

BlueBananas, the great thing on this thread is that we can be honest about our feelings. In life, through necessity, we have to be a bit hypocritical. Pretending we care to hospital,staff, no matter how awful the relative has been to us. Resenting our time spent in visiting, when people at home need us as much, sometimes even more. Gritting our teeth as we do another difficult physical or emotional task.

This thread has been my salvation for 6 years, under different names.

Thanks more the surgeon has said its no doubt to his drinking and smoking

Welcome, IWantABlueBanana. This is a great place for venting and picking up very useful tips and advice. Why do you say fil's lifestyle is catching up with him?

Can I join? It's not my parent but my fil, the bloody biggest child in my life.

73 year old, recently been diagnosed with a type of ureteral cancer- getting kidney, ureter and part of bladder removed in a fortnight... on my birthday, dh has joked it would be my best present ever if he didnt make it!

dh m died 16 years ago when he was 23 and he still really struggles with it. Half db and ds both live abroad.

I think now will really start the frailty, his stupid lifestyle is going to catch up.

Sorry guys, maybe here's not where I should be posting, it just popped up in active and seemed appropriate at the time

Thanks Peral. I think that's what I struggle with most. I just wish she could tell us what she wants to happen. A couple of times she has just looked straight into my eyes for some time, not said anything - but I've just sensed that she is trying to tell me something - perhaps that she wants to go. But there is also the horrible thought that what if it's not that but rather that she wants to live above all else? She will be 93 next month, tiny and fragile now but such a tough cookie. She has had masses of falls since this journey began but only ever broken a wrist. Would she want to 'give up'?

waving hello at the end of a long week...
DM is 70 but not great health. she kinda held everything together as she was the main carer for my DDad, then he died just before christmas (on my birthday, to make it extra crap)
anyway, after he died she crumbled physically and mentally. doesn't really eat, struggling with depression and isolation. two months ago an aneurysm burst. she's only still with us because by chance she was on the phone to one of my brothers.
she's been in hospital since then, was discharged way too early - although she insisted she was ready to go home - had several falls and back in hospital 48 hours later
yesterday we had a discharge meeting at hospital, the doctor and physio all really positive, and even DM seemed like she was going to give it a go
phoned her today to see how she was, and she's already reverted to be scared and needy
so i'm going to have to go over tomorrow and see her (have seen her 5times this week in hospital despite working full time and having 6yr old DD). she stays an hour + away, i've got work to do and we also need to finish clearing the garage as the builders arrive to start work converting it on monday
well done to anyone who's read all of my ramblings, just wanted to get it out as DHs parents are ridiculously healthy...

Hi Karmagician, this is what happened to my mum in her end life admittance. I rejected the feeding tube as she had no quality of life. One thing I want to say to you is, this may be a longer process than you anticipate. My mum was hydrated with fluids and anti-bacs. she was offered food but refused by turning her head. It was then a further 4 weeks before she died. She was kept comfortable, was able acknowledge nurses and visitors, but slowly became less responsive, I then asked when it would be time to stop the hydration and a lovely doctor told me the time is now as she no longer responds. I dont know if I should have asked earlier, but she did not seem to suffer and she could still turn her head when I spoke to her even in her final days.

Welcome to the thread Looby and Mum - sorry you have to join us. Peral and Needmore have given some great advice Looby - this sounds so hard for you when you and your hubby are essentially in the prime of your lives! Mum I think I was pretty much where you are now about 18 months ago, although my dad was very quick to realise that he couldn't cope as soon as it was clear mum was going downhill as he is registered blind and she was his carer. Nota hope you had a good break and Sandwich hope you have a good one too next week.
Things with us have taken a bad turn. Mum was on the up - I took my dad to visit her in hospital last weekend and she was sleepy but lovely and they were hoping to get her back to the care home on Monday or Tuesday. Then they changed her medication and decided she should stay in until Wednesday to check no adverse reactions. On Wed morning she was sitting up in a chair, calm and good-humoured, but after lunch my brother got a call from the hospital to say she had had another seizure and wasn't coming around from it. The neurologist saw her yesterday and said it definitely wasn't another stroke (turned out the last one had been) - 'just a seizure' but she has been struggling to come out of it. Although apparently she had finally opened her eyes this morning and a little more responsive, by this afternoon she still hadn't eaten or drunk anything and had rejected a feeding tube - although they have managed to get an IV into her to hydrate her. I don't know what to think. It feels like it is getting close to the end, yet every time I have thought that before she has come round again. We are all going up for the weekend tomorrow as my brother is away for a week and I need to take my dad to see her. Feel really low about it all....sorry...

Welcome mum (though sorry you are joining this little corner) It's somehow easier to read that everyone else is going through the same thing allbeit we are all at different stages.

My Mum was diagnosed 2 years ago, although had signs for a year or so beforehand. It seems hard to believe now, but less than 2 years ago she was still driving an MG sports car and flying off alone to Argentina!

One thing I do firmly believe though- in her own little world now, she is still happy. Hasn't a clue what's going on, or where she is, or who we are, but she's got a smile on her face, so I can live with that.

Enjoy your break thesandwich- hope GBalls steps up to the mark!