Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Oh SPT you must have been through the ringer over the last 24 hours. Sounds like she is having pretty good quality of life!

NMS I like her style!

Oh SugarPlum, what a shock. Glad to hear she's rallying.

Had an anguished call from DM earlier. No idea what was the matter but I can only assume it was all in her head as the carer had just been and they haven't rung me. Looks like she might need more than daily visits, so I am trying to see if anyone has recommendations for Care Homes where she lives.Then I will put her name down for as many as poss and go and visit at Easter.

Oh BTM, it is so hard Have you thought about ones local to you? I know it's away from friends but you need to think long term about what's best.

It was a shock. To be honest she looked dead in the photo and I felt sick. Then I thought it would be a release for her. Then next minute Brother saying she is ok, getting more quality of life and we might need to rethink the DNR. I feel like I'm a Yoyo . Luckily I sound so rubbish my lovely DH has instructed me to stay in bed. I'm missing being able to talk though !

Oh Sugar Plum what a nightmare for you - expecting the worst one minute and then a complete change the next.
Tilly It's so difficult to sort out care homes. I haven't been to look at any for DM yet as there's no sign of her leaving hosptal at the moment and I'm still unsure whether to look near where she lives or to move her near to me.
DM has got over her chest infection and the Drs are now talking about surgery again. She has a heart condition which makes the anaesthetic more risky (on top of the fact she's 87) but DB visited and spoke with the Dr and DM at the same time yesterday and to be honest the prognosis if she doesn't have surgery doesn't look good either. DB rang me to discuss what to do. My opinion is that it would be better for DM to risk the surgery - which she may not survive - rather than living out who knows how much longer with very little quality of life. She already suffers from health anxiety so the thought of her living with the symptoms and perceived symptoms is not a good one. Given that she gave up wanting to live when DF died over 2 years ago, harsh though it seems, I think the risk is worth it. They are doing a heart scan early next week to make a final decision. The surgeon thinks she should have surgery but is worried that if he doesn't get our agreement and the worst happens, then we will blame him. DM has gone from not wanting to be bothered with the surgery to veering towards agreeing to it. I am hoping to visit again tomorrow to get a feel for how the land lies.

DD has been a bit better this week - still signs of seizure activity but no full blown seizures - let's hope I haven't spoken too soon.

Fingers very firmly crossed for DD BBB. That is a huge amount to be dealing with, I really feel for you. FWIW, I am with you on your Mum's surgery, though I understand it is a very hard decision to make.

Thanks sugar plum. It is a hard decision, but when DM took a turn for the worst the other weekend, the Doctor asked if I thought she would want to be resusitated if the worst came to the worst. I had to say that I honestly didn't think DM would thank the doctors for bringing her back. She has lived all her adult life with ill health and honestly didn't think she would make this age - and definitely didn't think she would outlive my DF. DF died very suddenly (heart attack) and I really feel that is the better way to go, rather than a slow decline due to illness. If I had a choice I know which one I'd choose.

I totally agree , that would be my choice to. My Mother said when her time is up then it's up and doesn't want to be kept alive. I think she would be horrified to see what she had become, it's very sad.

Oh SugarPlum that must have been awful.
And I could have written your last post too. DM is mentally ready to go, but is physically strong

And BBB, I think you are right too. Fingers crossed the doctors agree/listen.

The feeling of bouncing like a yoyo continues. Cardiologist going in this evening and will know more the next couple of days but Brother losing his optimism as she csn't really wake up. My personal view is this is end stage heart failure but could be wrong.

Oh SugarPlum, fingers crossed you get a definitive answer

Spoke to DM earlier. She wants to go into a home asap - I am relieved, but not sure how quickly it can happen. I was planning to apply for attendance allowance asap but need certified copy of POA... As she has some savings, I guess it's just down to me to find a suitable place? Very tricky for me to go back up for at least a month, buy I can get her name down for potential places I guess.

Oh Tilly- I am so sorry. Is it possible to think about respite care in the short term as finding the right place might take a while? Your carers may well know where to look at and where to avoid.
SPT- the wait must be so hard. You must feel helpless. Hope your lurgy is better.
Bb hope your dd is recovering and things are as good as they can be for your dm

Thesandwich thanks for that suggestion - I will keep it in mind incase the daily carers doesn't work. She is OK at home, but is worrying about everything and feeling overwhelmed.

BTM it actually sounds quite positive that your mother is asking about going into a home. So many older persons are resolutely against it, even well after they have lost capacity, I went through it with my grandfather and the guilt of over riding his wishes even though every one from his siblings to his social worker was telling me to, was crippling. As you may know my Dad went into a home 2 weeks ago, after a 5 week hospital stay. I went to visit yesterday and my impression was better than the 1st time. He was sat in the living room with other residents (all have dementia) and seemed fairly content (as much as his horrid dementia will let him be). Bro had brought a lot of snacks which he munched through, we looked at some magazines then he wandered off to sit next to another resident and his wife and look at their photos, seemingly having decided that was more interesting than his own kids! It was half heart breaking half reassuring, he was always very sociable, loved a crowd and would circulate around a crowded room with aplomb. He already seems physically a lot stronger than he was in hospital.
The distance thing is a bit of a bummer, it's 2 hours to get to Dad's home, meet up with bro, sort out practical problems at the house , then another hour on the coach to get to the home. If I went directly to the home it would be about 2 1/2 hours all in. Being able to just pop in would be good, but if I'm honest not being right next door has its advantages, I wouldn't want to be drawn in to every last detail (the lost socks, the resident he had an altercation with that morning, etc etc).

BBB I hope things are a little less hectic now, good you can discuss things through with your brother.
SPT I 'm starting to think the very elderly, like the very young, can get quite poorly very quickly, then bounce back remarkably. I frankly thought Dad was not long for this world when I visited 2 weeks ago, now you'd never know he'd been in hospital, basically bed bound for 5 weeks.
Sandwich hope you are well and your oldies not doing too badly.Thanks for all the support you give on these pages.

Thank you Bob! I know how dark it can get so if I can listen....

Bob, she was resolutely against it at Christmas! And I think you're right about them bouncing back - I think DM could well improve significantly when someone else is looking after her!
Glad to hear he seems to have settled into his new home.

Sorry to post and run. She's woken up and tests on heart rule out that as explanation for her state so conclusion is she's had a stroke.

Apart from speech being slurred she seems ok . Brother said it was like she had woken up from a 2 day long sleep.

News not good today. She's woken up 3 times and is relatively alert when she does but if you wake her up between times then there is nothing there, she's like a zombie.

Ultrasound on breast, mammogram not possible, her breast lump probably malignant.

Oh dear SPT. Sorry to hear this. Her having had a stroke/ TIA does make sense from what you describe.

So sorry SPT. You must dread every call and message. Take care.

Oh SugarPlum, it sounds like a terrible roller coaster for you - must be awful

Aargh as much as stepfather drives me crazy sometime the
Powers-that-be are worse.

His latest is, He uses a mobility scooter in the house he is on his 4th in 5 years. Daily phone calls as the latest one is in for repair. He has decided after paying out £145 for the repair it is taking too long. He has TOLD me to buy a new one, It has been a week in the shop . So another £1100 spent today.

He had a visit from the sensory team as he is losing his sight. She advised he needs a dementia diagnosis. Phone the doctors, she says the request has to come from him. I say, He has dementia, he can't make the request. They say You will have to bring him in. Not possible for reasons they are perfectly aware of.

Well he has to see the doctor.
Is the doctor able to come to his home.

No the doctor won't come home for a dementia assessment.

So how can I get it done. Well as i say he will have to request it.
I have POA can I request it.
No, only him. Patient confidentiality.

So what should I do now then? The lady from the sensory team thinks his dementia needs assessing by the GP.

Well unless the patient requests it we cannot do it. If you bring him in"...............felt I was in the dead parrot sketch.

I was so polite, thanked her for her help. Not sure how to proceed now. Not sure if the dementia assessment will make one iota of difference to his life, but feel guilty because I have been asked to get it done.

Oh florentina you have my absolute sympathy. I am in a similar position with DM who lives 200 miles away, and they wanted me to bring her in. However she has already got dementia diagnosis and is under the memory clinic, but now needs everything updated as she has deteriorated and wants to go into care.

Do you have an agreement with the GP that they will talk to you about his appointments/records? I at least have that - she just had to sign a letter I wrote for her saying she was happy for me to be in that role.

Also sympathies about the breaking things - DM is constantly in a tizz now because everything is "broken"

I try to be really sympathetic to the people I have to deal with.

You think to yourself, they know of his disabilities, they know I have POA, they know dementia patients can't make decisions. Then I say to myself, he is only one of thousands they are dealing with every week.

I don't think I am going to push for the referral. Mainly because I can't see how it will improve his life quality. But selfishly, I also have to go to 2 London hospitals with him,Barts and Moorfields, plus 2 local ones. Every time there's the patient transport to organise, the moaning about the waiting etc.

How frustrating Florentina Two things that a diagnosis does provide are the option of medication if it is Alzheimer's and council tax rebate if they have attendance allowance. There are pros and cons to medication and it only works for a limited time and not for everyone and not for vascular dementia.

I'm glad your Dad is starting to settle Bob, it's still hard though.

BTM I remember the everything broken phase very very well!! That's really good she is pro the idea of a home, makes life a lot easier.

my Mother is going back home today. I think this has caused some ripples. She has a fan club amongst the carers who have questioned Brother's every move. He says he welcomes it. He's going to update me once she's back later and they've got 3 carers on duty tonight.

What I find hard is I don't really know what to expect - will periods of wakefulness increase, what's with the zombie thing when you wake her? I know risk of a further stroke highest immediately after one how long does that last for? He talks about her pulling through this but to what ?

She has mixed dementia. Heart failure, flares of cellulitis has had a stroke and probably has breast cancer. I'm suspicious that bleeding on her pad that has been found is womb cancer. I can't see what she would be pulling through to - pain and suffering as far as I can see. Guess what will be will be and time will tell. I think it's because she had just started to get some quality of life back with the respiridone ie. Going out on trips, not fighting with and bonded with the carers, making a friend with other resident, playing ball, being more sociable.

One thing I am really pleased about is that we took. The plunge and flew her over. All the time she has been in hospital a carer has been there holding her hand which I find very comforting and my Brother says her care team are dementia super heroes. She pays what she was paying in first NH but for infinitely more personalised care.