Cockroach Cafe - Autumn

[rookiemere]

A new thread but the same themes, for those of us going through the ongoing challenges of supporting elderly DPs and relatives.
No judgement just support and virtual gins or tea on tap depending on your preferences.

I went to see DM in hospital last night. Spent 2 hrs listening to stories about how nasty the nurses are to her, how the doctors are conspiring to keep her in hospital, how ridiculous it is that the care home wants to do a care assessment before they accept her back, how annoying it is that someone keeps changing the clock, and how much she wants to just go home. And so on.

Managed a grand total of 90sec of telling her about the operation I'll be having on Friday before she changed the subject to something about her.

Sigh.

@NeedMoreTinfoilsorry that things are so hard for you.

I am really sorry to have to say this but I very much doubt telling your DM how much her demands are impacting you will change her behaviour. I know this because I have been there, with my DPs case there was also dementia in the mix, but even if there isn’t from talking to other friends with elderly DPs it’s like their self preservation kicks in and overrides all of their previous parenting instincts.

Unfortunately the only way you’ll get to do less is by ignoring calls and your conscience and actually just doing less. A crisis will inevitably happen and she’ll likely need to up her care.

Having said that I would simplify things by taking them into your own hands where you can. So get the form signed to be able to speak to her doctor, change her prescription so it gets delivered. Arrange an online shopping delivery- although I know this is also not stress free. Do as much as you can on a practical level remotely to get systems set up to try and reduce the in person visits.

@rookiemere I am definitely going to push DM about signing forms with GP.

I have suggested, repeatedly, prescription and shopping deliveries - she point blank refuses either. So it's an extra support worker visit.

I am toughening my stance on what I will do for her. And I'm not calling for an update about the prescription issue. It's not life-threatening if she doesn't get it. But you are right I will need to grow a thicker skin and a deafer ear. I have a lot of years of conditioning to keep the peace with my DM to undo.

@bigdogpaws @EmotionalBlackmail

Possibly ND or possibly just two people who think that caring/domestic work is not what men do and are casting around for other female relatives to come to the rescue.

I'm just musing as to whether male/female roles and stereotypes are behind the lack of rellies visiting my DM. It's pretty much all my DF's family who no longer bother, with the exception of 2 female cousins who stayed in touch. My DM's family (aunt/uncle and to a lesser extent their kids) are much more involved.

My mother agreed to online grocery shopping (all arranged by my sister) when she broke her wrist but after a while she cancelled her Tesco account and wants to be taken shopping again.

I think it might be because it's an opportunity to spend time with other people and get out of the house. Other opportunities to do so are thin on the ground these days. Unfortunately that doesn't take account of the fact that it's not always easy to take her to the out-of-town supermarket.

@EmotionalBlackmail I have been thinking a lot about ND in older people who simply would never had been diagnosed. My mother has always been ‘eccentric’ in what people would call a ‘quirky’ way. Always contrary always right, even when she was wrong. As she aged it became less endearing and one sibling armchair diagnosed her with dementia. I arranged a proper assessment and she was very pleased with herself to have passed it flying colours. Sibling found it very hard to accept his mother was simply odd and old age was making her more difficult. Saying no to everything or being contrary was simply her personality. No amount of labels will change 85 years plus of being hard work.

@EmotionalBlackmail @NeedMoreTinfoil Whilst I wouldn't rule out Brother having some form of undiagnosed ND, I've not noticed him interpreting things overly literally in other contexts. He has always been very reliant on our parents and I think has had a lifetime of refusing to take sensible advice, making questionable decisions and then having someone to make everything OK when inevitably it all went wrong or got difficult. I think he doesn't want to accept that external help really is needed so when DM voices unreasonable expectations of people he's trying to persuade himself that she's entirely reasonable and of course friends/family should come together to be that 'someone' who makes it all OK. It wasn't until we had a very definitive written diagnosis for DM that he was willing to acknowledge that there 'might' be a long term issue. Even when she was hallucinating he argued that she as just remembering vivid dreams.

What worries me most about the latest claim that friends/family aren't doing enough is that if he tries to put pressure on them (or encourages her annoyance with them so she is unpleasant to them) people will stop visiting her. They are already asking visitors to run errands and I can see that putting some people off. Although she often moans about visitors (this is nothing new) I can see how her mood lifts when people have been to see her. I don't think either of them really appreciate how valuable just having social contact is.

@MittensTheKittens Your campaign re falls is a good idea. When DM had a series of falls it seemed to be treated almost as inevitable and no one seemed interested in looking at WHY she was falling, or whether there needed to be changes made to prevent her injuring herself. There was one (older, male) nurse in A&E who prompted me with questions I should ask her GP etc. I suspect he had seen it all before and recognised DM's dementia symptoms.

When mum had a series of falls the system kicked in perfectly but mum didn't. She refused to do anything to help because Alzheimer's meant she didn't remember the falls so they hadn't happened and everyone was making a ridiculous fuss about nothing.

@bigdogpaws my mum felt dismissed when she mentioned that she had fallen over.
A&E patched her up and referred her, but the Falls Clinic didn't seem to be bothered either, they decided she wasn't having a mini stroke and it wasn't biomechanical, they changed a blood pressure medication, but didn't then schedule a follow up with anyone to check their theory had worked.

It's taken a 10day (and on going) hospital stay to get to the bottom of it.
The new drug she's being given might also resolve something else which has been showing in her blood test for years.

Mothering the mother continues.

My grandmother had a fall alarm that she could use to call for help, but she would never use it because she didn’t want to bother anyone.

Social services have agreed to an extra call at lunchtime after DM fell this week and forgot to press her alarm.

Wish me luck as I start on today’s roundabout of phone calls. DM has a 6 monthly Denosumab jab for osteoporosis. District nurses do a blood test a few weeks beforehand. They are willing to do the jab at home for her. GP is happy to prescribe the jab. The hospital rheumatology department insist that she must attend their clinic and have it there. District nurses say this isn’t the case as they do it at home for many patients.
It took me 15 phone calls to get nowhere 6 months ago, the hospital kept repeating that the GP didn’t accept shared care, the GP even emailed the hospital to say they were happy to do so but nope.

Good luck with the telephone carousel, @BestIsWest !

My brother has a formal diagnosis of autism. I don't know if he's been given any other labels but he's definitely also dyspraxic (recognised as soon as he started to toddle!). When he was diagnosed as autistic (in his late 40s I think?), DM told me that she read about autism and felt she could see herself in the description.

Well, yes. That instantly made a lot of things clearer.

I wonder too if, as well as stubbornness, she has PDA which leads her to refuse to do things. I'm sure my brother has PDA, whether or not that's on his MR, but with a very passive presentation - he never refuses to do anything, he just rarely actually gets on with it. So you can see that little of what NEEDS to be done for either of them actually GETS done, and no amount of reminders or external input helps, in fact with PDA it can make matters worse.

Thanks @Eclipsing . It’s funny how these things become clear. When my own DC were diagnosed as dyslexic/dyspraxic I could instantly see the traits in DM. I’m also 100% convinced that she has ADHD and that much of what we’ve put down to Alzheimer’s is actually ADHD. She has hydrocephalus now as well which also affects her memory but even when we were children she would do things like put eggs on to boil and immediately take us to visit our grandmother. Her capacity to lose things is (and has always been) incredible.

@Eclipsing @BestIsWest mine too - so many things I could list which now fit undiagnosed ADHD and or autism. Notorious when I was a child for making toast and burning it, pans boiling over etc. She would wander off to another room, start doing something else and lose all sense of time until she smelled burning. Starts things, can’t finish them. Always has to be right, can’t be challenged (rigid thinking, perhaps experiences disagreement as rejection sensitivity?). Has meltdowns, has an epic temper, always had. Loses things. No sense of direction. Can’t drive (tried to learn, had a memorable episode of driving straight over a roundabout and gave up). Can’t get on with anything technical, mainly I think because she can’t process the sequence of instructions. Sense of time is completely fucked up, she goes to bed at about 1am and doesn’t get up til midday (what do they call it, revenge procrastination in the evenings?). And if I want to get her to do something, it has to align with something she’s convinced herself she wants (dopamine) rather than should do, otherwise she will resist more than a mule (PDA). God knows how she brought me up.

Visited mum this morning. Today was a "I come here when I've got nothing else on for company and to save cooking" day. I've come to the conclusion that those are better than the days she realises she lives in a care home now and cries about missing dad. At least, in her head, she's living a busy independent life and she's happy.

Been lurking for a while and have found the thread so helpful but things were jogging along okay till recently. Now Dad, in his early 90s, has been in hospital for over 3 weeks now following a fall and a raging UTI. He’s pretty much over the fall injuries and they’ve treated the original infection. He is desperate to go home but new things keep developing. The latest is that he is on a drip for a chest infection.

He has very obvious signs of dementia but no formal diagnosis (he missed a previous diagnosis appointment being ill). if he didn’t have the dementia I know he’d have called a taxi and hobbled out the ward by. now.

He says he doesn’t feel ill and he’s so bored and unhappy on the ward with no TV and only a tablet he’s forgotten how to work.

I feel so sorry for him.

@MotherOfCatBoy so familiar! DM took 8 attempts to pass her driving test, never got the hang of using a mobile phone etc etc. She once left the dog in a supermarket car park and drove home without her only remembering when we came home from school four hours later. Luckily the dog was still sitting there waiting! (She was a very good girl).

@countrygirl99 I suspect we are en route to the care home. Another call from the Lifeline people. This time because she was having a ‘funny turn’ but couldn’t explain what she meant. I am so sorry for her.

Carpuselmof phone calls didn’t go well. Hospital says GP must request shared care. GP receptionist says I need to speak to GP and can only do that during triage between 7am and 7.10 am when there is a full moon and the sun is in the house of Aries. Or so it seems.

FIL believed most of the time that he was working away from home, and staying in a hotel (something he did often when he was younger). He always seemed happier on those days. I think it made more sense to him than the idea of being in a nursing home, and gave him some comfort.

In my experience “medically fit” doesn’t equate to being fit for discharge. The decision about being fit for discharge might also include OT assessment of the home and how much support is available.

For us, medically fit decision was made by Drs but mum still needed a stay in a rehab setting to attempt to recover mobility lost by being in bed for 3 weeks. She ended up with me and DS arranging for a move to a care home permanently “until you are stronger”. She self discharged from physio so she is still there. In reality they were still ready to discharge a month later until they realized she was a self funder. Then it was OK that she didn’t go home. She managed to slip out of her chair within 24 hrs of being in the care home.

'Medically Fit' means 'medically we have done what we can'.