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

[thesandwich]

Continuing the long running threads for anyone juggling elderlies and everything else. Loads of wisdom, support and the odd laugh...
How are you all doing?
How is everyone coping with the extra teens with exam challenges?

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

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.

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......

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?

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.

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

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.

Brilliant wise words CDA.

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

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.

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.

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

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

Welcome tio sorry you have to join us. You and your df must be in shock. There is some brilliant advice a bit further down on this thread by peral and nms which may be useful- just try and gather all the info and support you can.

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.

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. 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.

Hello, can I come and join you. I have an elderly mother who has suddenly deteriorated physically and more worryingly mentally. She lives on her own, 3 hours away (including a ferry ride!) and after a stay in hospital and some convalescence with me is now back home. I've arranged for a daily carer to come in and organised grab rails to be installed plus a personal alarm. The biggest problem is getting her to remember appointments and she barely seem to remember anything I tell her. I am finding it all very overwhelming at the moment having spent lots of time organising everything for and trying to keep on top of my own life/work/children/husband/cat. I am hoping things will settle down a bit. She has finally accepted that she needs more support and over the next few months we will be looking to buy somewhere local for her to live but I worry that the move may make her memory even worse. Anyone got any top tips on supporting a relative at a distance with what I suspect is early signs of dementia and/or how to manage a major move?

I would suggest getting her post redirected to you. That way you can keep track of her appointments, financial needs and utilities.

Welcome cosmic. Things sound tough- would certainly echo pithiver with mail redirection. Helped enormously with mil. Also we god do a pad with days of the week on and she puts each week’s visits etc on it- carer could check with her. Sounds like more help will be needed@- also, moving is a massive undertaking. Could you find somewhere for respite she could stay locally while you sort stuff out? And prioritise your needs too. You cannot do it all.

Does she have a diagnosis yet? If not, then maybe get the GP to call her in for a "check up" (this is what we did with my Mum who was convinced there was nothing wrong, a quiet word with the GP and she went in, was referred for a scan "a run of the mill thing at your age" and thence to the memory clinic) If she gets a diagnosis, then she gets into the "system" which awful though it sounds, you will need eventually if she does have dementia of any kind.
My Mum went to a sort of memory club thing weekly for about 3 months (she quite enjoyed it I think and made a few friends) and through the Gp's surgery we managed to get in contact with an organisation who did pop ins every so often to make sure everything was OK in the house. (till it wasn't obvs!)

Thanks that's good advice, will look at getting post redirected. She doesn't have a diagnosis yet. However I managed to talk to her GP and asked him to do a memory assessment as I was concerned and I booked the appointment on the pretext of her needing new medication (plus got a friend to take her there). She was not having a good day and the GP said she had scored poorly. I must admit I was relieved about this as she quite frequently appears totally with it when meeting people but I can see how confused she has become. So I am hopefully she will now be referred for a fuller memory clinic assessment and I guess this will lead to a diagnosis. Her memory and cognitive function seems to vary so much from day to day. I just hope it may settle a bit now she is at home. She is fiercely independent and rejects most thing that she thinks are for 'old people' so we battle on.

Pick up a form from the post office and present it with her ID. I think it is £65 for a year.

I'm always amazed at how much people here know about stuff. All kinds of stuff.

I'm silently screaming again. Aged parent asked me how I was, so I said actually I feel dreadful - nauseous and with a splitting headache. There then followed a list of her ailments with no acknowledgement of mine, not even a token "oh dear". I try to grin and bear it, but I am feeling so worn out at the moment. I can see that many people here have it far worse than me, but I'm exhausted. Sorry to whinge.

Do you live anywhere near London. If so I am happy to both buy you a drink and listen to you. I was almost drowning five years ago.

It's a lot easier now as I have both knowledge and perspective. I don't think I would have made it if it were not for some kind help from and laughter with (gallows humour) people on this board.

My godmother died yesterday. My mum's childhood best friend and the last link with her northern home town. A lovely lady. And independent till the last six weeks.