Cockroach cafe - Spring to Summer 2026

@MysterOfwomanY - I might have to get DH to hide my passport just in case . Always loved to travel…
Apparently the nurse came to change the dressings on MiL’s legs today, and gave her a rollicking for not using the bed and so not elevating them. She promptly ordered a hospital bed which I suspect will remain pristine and unused as mil won’t allow the carers to put her to bed and put the sides up, and if they don’t she will just do what she does and wander around at night when she gets restless/confused. Dreading what will happen if she leaves the house in the night!!
Nurse also switched to daily dressing changes as the dressings are soaked through after just 2 days now .
tbf I don’t think elevating them would make a massive difference at this stage even if she could be persuaded given her heart failure, but it might help at least a little? Who knows. It’s all very sad and grim. We’re in the bleak stage where I’m pretty sure she’s in the middle stages of dementia; not well enough to keep herself as safe and well as possible, but not ill enough to trigger the lpa or the system to override her wishes as expressed during the daytime when she can still present as quite ‘with it’.

He was a lovely man who would do anything for other people and had endless patience as a grandad. It seems a relief to think about that aspect of him rather than how he had deteriorated.

@StillNiceCardigan condolences from me too. I hope the memories from before are a blessing to you.

@StillNiceCardigan wishing you peace now💐

@Choux the CH are starting with paracetamol, they arent leaving the pain untreated. If paracetamol does the trick then okay. If not then the next step is morphine. Lorazepam cant be used with morphine.

The dificulty is that DM doesnt speak so it is hard to know what is causing DM pain. DB spotted that DM was getting agitated by her abdomen and got the nurse in.

There has never been an explanation of what is causing the distension. Neither DB or I have pushed for this as it would require her going to hospital and all that would entail.

DB is very caring of DM. Now it seems that DM could be in physical pain he wants it treated.

I have been in the background for a bit lately. FIL deteriorated quite rapidly and died today. DH had a bit of warning so was at FILs bedside with MIL and was able to say goodbye. The care home were amazing and did everything to make FIL as comfortable as possible.

Now its almost as if we can move on from the dementia and think about FIL as he used to be.

So he has shifted a little in thought but she is still unmedicated?

I had forgotten about the distended abdomen which you mentioned what seems like 2-3 weeks ago. If she is now showing signs of pain surely the care home will get bolder at telling your DB she needs to be given the remedy to the pain which is morphine?

Finally got DB to shift on the topic of light sedation for DM. She is getting less and less responsive to soothing techniques. Now she is either asleep or awake and distressed. Even DB can see this now.

Of course it now looks like that is another of 'yesterday's problems' solved. DM is now in some pain/discomfort from her abdomen (hugely distended). It is possible that the next step is going to be morphine.

@PillowSoft Oh I love the less polished travel videos where you see the "getting lost / being late" bits.

Traveling Turtle
Planes, Trains, Everything
Steve Marsh

are some examples this sort of thing.
And I read a nonfiction account of a woman who went to Oz without flying... Container ships etc ...let me look it up ...Maria Staal, more than 1 book it seems!

Oh and it's perfectly normal to dream about going to the nearest container port with a passport and all your savings and buying a place on some ship heading out, leaving no forwarding info. We all know it won't help, so we don't do it, but that impulse to turn and run is so, so common.
Funnily enough I watch a lot of travel YouTube videos where people get on a train or bus or plane and kind of just keep going!!

@MysterOfwomanY I have always had a bit of this in me! I used to wonder if you could just turn up at an airport and to a kind of potluck, what availability of flights that we’re leaving that day. Perhaps you could do that once upon a time, but I doubt it’s the case anymore.

Obviously, I don’t travel that way. But I do some wandering on my own when my own health and commitments allow. I also do love the English weather, it’s been raining here this morning and it’s quite cool, but sometimes I crave a bit of ☀️ so more recently I’ve decided to allow myself the luxury of spontaneous (cheap) travel.

Those YouTube videos sound interesting, I have never come across anything like that. Can you post an example?

@SqueakyDinosaur yes, RESPECT form completed for DM. I'm not sure how much use it actually is, this could be DM's useless GP though.

Same with LPAs. Better than nothing but not as good as they should be. Too much pussyfooting around.

I have started completing an Advanced Directive form (Alzheimers Society has a template).

Mum's GP forwarded the form for us to complete with mum. It was prepopulated with diagnostic info and (inaccurate) family contact details. I did what I could but then mum refused to sign it because it said she has Alzheimer's and she doesn't accept that she has as she forgot the memory clinic and brain scan appointments almost immediately. But mum's GP is pretty useless. Reckons she's "fit as a fiddle" despite being breathless and with swollen legs that the carers regularly raise concerns about so I wouldn't base what should be done on what they do.

Long-time lurker here, but I just wondered if posters know about the RESPECT form (Recommended Summary Plan for Emergency Care & Treatment). I believe the person needs to have capacity, and it has to be created with and signed by a clinician.

I only found out about it this week because a friend's father was asked to complete one. I will be recommending it to my DM, who is fairly clear-headed but physically very frail and disabled.

ETA link: https://www.resus.org.uk/respect/respect-healthcare-professionals

@NoMoreFluffsToGive
Leg ulcers are a BUGGER. My ER has the district nurse round every 2 or 3 days to dress them. Walking more is supposed to help them heal, but the patient often has terrible mobility issues and executive function issues (where "should" never gets to "does") so...

Oh and it's perfectly normal to dream about going to the nearest container port with a passport and all your savings and buying a place on some ship heading out, leaving no forwarding info. We all know it won't help, so we don't do it, but that impulse to turn and run is so, so common.

Funnily enough I watch a lot of travel YouTube videos where people get on a train or bus or plane and kind of just keep going!!

@funnelfan I know what you mean about that ad! I think as a society we need to get better at talking about the realities of cognitive decline and having proper informed conversations with our families way before it becomes a problem. My (admittedly limited) experience is that too often this is not discussed at all until there is a problem, by which time emotions are high and the older person may have already lost the ability to really think through the implications of the options. I know that Mum, even at a fairly early stage in her disease, simply does not have the executive function to process pros and cons of care options. She just can't get beyond 'this is all scary so I want my familiar home and my children with me at all times'.

Lots of people I know have their wills organised, funeral plans discussed, written down and updated every few years etc plus discussions about organ donation if it was applicable. But no discussions at all about their thoughts on care if they were not able to manage independently whilst still alive. It's something I have already started to discuss with my young adult children.

Sadly, I think some form of cognitive decline is inevitable as we age. Why should the brain be immune to wearing out - all our other organs and joints and bits and pieces decline to some extent too.

As with most things anatomical, some lucky few manage with minimal impact, but the rest of us have to manage a mix of issues. Eg my mum being physically very frail, mentally fades in and out but heart, liver, kidneys, lungs are all in great condition for a woman of her age.

As a society we’re doing much better these days at dealing with mental health issues and the stigma is disappearing. Hopefully that understanding will also extend into the cognitive decline that comes with age, not just those with an official dementia diagnosis. That ad on the telly showing a peaceful, clean, articulate older man in a tidy house with a sad daughter who brought a bar of chocolate drives me bananas - it’s nowhere near the reality for either of them. It leads exactly to the situation with the useless DB’s on here who seem to think their mums just need someone to make them a cup of tea and make sure they’re settled comfortably in front of the telly for the day.

My DF's family (parents and 5 siblings) have all lived to 85+ with no dementia so far (parents died of stroke and cancer in their 90s, two siblings died of cancer 70s and 90s), the three still alive are absolutely fine cognitively just physical problems. I am really hoping that having got this far they won't develop it.

I think there can definitely be a family element with the risk of dementia but also people are being kept alive much longer now. One of Brother's arguments for why Mum can't have dementia was that there is no family history. But as far as I'm aware only one of her parents/grandparents/aunts/uncles actually lived as long as she had. Perhaps if they hadn't been taken by something else more would have developed dementia.
I think the stigma around elderly care needs and care options is a big problem. I think for years Mum and Dad covered up what was happening with her because they didn't want to face it but also didn't want to be seen as cognitively impaired. I think we have a similar issue with care options now. I suspect Brother has some selfish reasons for not wanting to consider residential care but more than that I think he and Mum both see it as 'opting out' and a dreadful thing that only happens if family don't care. I know they were both fairly scathing in their judgement when MIL decided that FIL needed a care home (which was absolutely the best thing for him, and gave her back the ability to have some form of life for the 10years+ that he needed 24 hour care).

My great gran didn't develop dementia until she was in her 90s. She was still organising the church choir until she was 90.

@Scrabsqueak my DM is 85 and her DM developed dementia at about the same age. I do think there might be a family element. The anxiety is SO wearing, she was texting me for 8 hours one day last week because she'd had a phishing text message which I had checked out and told her to delete but no, she wouldn't listen, she makes mountains out of the tiniest molehills. She has always been like this, we had a very poor relationship when I was a teenager as I had to tiptoe around not telling her anything in case it set her off, but the forgetfulness and lack of availability of Dad has made it worse.

Family being secretive about illness sounds familiar. My DF died of cancer but the 'official' message which went out was that he had pneumonia. There seened to be a stigma associated with cancer.

For my DB there is a stigma associated with dementia, 'nice, intelligent people dont get dementia'. Dementia is something only people who arent intellectual like him get. For months he obstructed DM getting a diagnosis.

He also now seems to see a stigma in medicating DM's distress. Part of this is that he sees himself as being the superior being who can calm DM's distress and if only everyone did what he does then DM would be perfectly happy. This despite the reality that it doesnt actually matter what anyone does, DM is in her own world now.

I have told him that if I am asked then I will agree to any medication proposed.

@Choux , I’m not really sure about family history. She says they all lived to a grand old age and were absolutely fine till the day they died, but I have my doubts. There is no one else to ask, but she also has the story BIL was well until the day he went into hospital, but I was around at the time, and he definitely was not, he was obviously very ill, as was my DH who she also says was fine. Whether she really believes that, I don’t know, given how she is downplaying her apparent incontinence which she has not told me about except by mistake this week. It was obvious to me my FIL had Parkinson’s before he died, well before, but no one in the family mentioned it. It sometimes makes me wonder what I married into, and has perhaps made me overshare with my DCs, but I really resented all the denying and ‘don’t say anything’ when someone got seriously ill, and refused to go along with it when my DH was diagnosed with pancreatic cancer.
Even when my BIL was in hospital, and named me as next of kin so Drs told me he had liver cancer he asked me not to tell MIL, even though he had only been given about 3 months to live.
I think this is part of my trouble dealing with MIL, she is not my own family and I just don’t understand how that type of secretive family dynamic works so I keep getting it wrong. And there is no one else to explain it to me, cos she is the last one standing out of all of them!
Sorry everyone, I seem to be venting a lot recently, and my situation is really much easier than a lot of you are going through.
@ElderlyDilemmas , you really have perfectly described how it feels, thank you.

@bigdogpaws WRT the Attendance Allowance form putting it at a very base level helping with toileting & incontinence is a key factor along with personal hygiene. Record any assistance no matter how small.

My parents also both started showing dementia symptoms at about 80. It’s caused by a build up of protein in the brain so I imagine the protein could build up quickly and symptoms are evident in your 70s or build up slowly so symptoms don’t occur until almost 90. The NHS says the risk of developing Alzheimer’s increases with age.

Is there any family history of dementia or have previous generations died before your MIL’s current age?
https://www.nhs.uk/conditions/alzheimers-disease/

Scrabsqueak my parents both started with dementia in their early 80s.