Cockroach Cafe - come and try our new sunroom

[MereDintofPandiculation]

Welcome, come and see our new sunroom/conservatory, open just in time for the colder weather, and opens straight off the Bad Daughter’s room.

Anyway, come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So cockroach mes amis/amies, and may you all live to fight another day.

I'm sorry @Hodibiddy It's tough to be the one in charge. Do they have any help at all? Gardener, cleaner?

Oh Hodibiddy.

A scream sounds the least of what you can do.

Without wanting to be negative... a note of caution. Moving people that age is such a major deal - losing those neighbours etc. Could they move downstairs instead? My plumber says it will be February before he can install a shower but actually February isn't that far away. Could they have regular help coming in? Just don't jump to 'moving house' as the answer. Screaming is better...

Oh@Hodibiddy scream away. That sounds spectacularly tough.
And unsustainable. You must protect yourself and your health.
Is there anyone they would listen to?neighbour/ church/ family friend etc who you could talk to? Or district nurse via gp?
Please use your health with these folk…. And get your dp’s to accept help. Pay neighbours if they are interested in work. Seek help via age uk/ local fb etc. Cleaners/ Gardeners’/ companions etc etc. Before you break.🌺🌺🌺

@hodibiddy. Huge hugs.

Second the idea of some form of home adaptation if at all possible, and definitely get in extra help.

Could you frame it in terms of someone doing a personal assistant type role to cover shopping etc?

Definitely look at cleaning and gardening if not already in place.

Heavens, I outsource as much of my own chores as I can and I am not yet in my dotage.

Attendance Allowance is non means tested and helps towards the cost. Might be worth applying - but not yet, think of something nice to do for yourself. It's a tough situation. X

Many thanks for your replies.
I hear everything you’re saying particularly regarding moving home.
Their house is not adaptable. We researched and they were unable to get a downstairs loo due to the lack of drains.
My thoughts are that if they decide to move, it will be a joint decision that they both accept. If one of them dies, it’ll be that much harder for the remaining one to cope with the loss as well as moving.
My mum is showing signs of short term memory loss and can’t remember days and time etc.
She refuses a cleaner and is quite capable of minimal housekeeping. I go change/make the beds, hoover, sort some washing out although they do have a laundromat who collects, irons and delivers the majority of their washing.

I’ve seen such a decline in their well being in the last 12 months.
My mum misses being able to be spontaneous and go out when they want to and would like my dad to start driving again. I’m afraid I’d have to intervene and make sure that doesn’t happen and I’d prefer my dad to make the final decision to surrender his license.
Mum would like a retired chauffeur to come twice a week and take them out!
🤦‍♀️

Chauffeur twice a week sounds brilliant - why not! Taxi driver?

For your own health they must accept help. Why not contact a taxi firm with remit to take them out? Show the balance of cost v running a car?
You deserve to be a daughter, not carer or cleaner.

Hello

I’m still quite upset about incident two days ago. Do you mind if I vent and share please?

MIL lives with us and her other son on a two week rotation so we do get a break. She has advanced dementia and is increasingly immobile and incontinent but we generally muddle along time ok.
She had an accident and messed herself when DH was out and it was just awful and I can’t stop worrying about it and also feeling a bit angry.

I hope it’s not TMI but I’ve no one to tell, DH is just all ooohhh no spare me the details I do t want to know which is very unfair.

The mess was everywhere she was struggling to stand and was undressed below waist so was shuffling along the walls and smearing it everywhere. All over her shoes and treading it everywhere. All over her hands, legs, back and light switches, walls,carpets, her clothes.

She was trying to clear it with tiny bits of tissues and was shouting at me to just leaver her be.
I had to shout back to STOP WHAT SHE WAS DOING AND LISTEN TO ME, she was making it all so much worse.

We never shout at each other.

She then refused to shower and stood her ground saying she just needed some help to clean herself. Long story short she’s then bent over and I find myself with a bowl of hot soapy water cleaning her best I can.

I’m not a troll I promise. I’m just a bit traumatised and keep shaking when I think about it.

Me and her both panicked. I dealt with it badly and should have made her shower. The indignity of it all ☹️ She’s 88

I feel like if there is a need to move house, it's already too late. If they have got to that level of infirmity, they won't cope with the hassle and upheaval. People need to think ahead and move before they need it.

This is of course one of many situations where I expect in 30 years I'll be just as guilty.

@BippityBobbityBoo you are v welcome to vent here. It sounds awful- friend had similar with her dm who is now in a care home.
You shouldn’t have to do it. You did the best you could. You are not trained for this, and you and mil deserve dignity.
🌺🌺

@thesandwich
Thank you.
BIL is more open to a care home than my DH is but then my DH isn’t the one dealing with the worst of it.

DH is of the opinion that the worse her memory gets (and it’s really very bad now) the easier a care home will be for her and for us.

That’s not right is it?

Then let dh deal with the worst of it. Or hear about it.

Bibbity my mother's care home are struggling to deal with her continence, so remember that you're doing a great job. It really may be time to think about more care though x

I'm not sure what your dh is waiting for. If he doesn't want the details that's not good enough.

Yep, let him sort out incontinence. Or get his brother to have a chat. It's not fair to go "la, la, la" & let you deal with it.

I would be shouting my head off & probably moving out. But I have adhd, so emotional regulation isn't a strong point. 🙄

Does she wear pads/disposable pants Bibbity? DM will wear them at night, but refuses for day time.

Sorry, but your DH needs to step up.

@BippityBobbityBoo why does your husband think it will be easier when her memory’s worse? Even if people can’t remember what “home” is, it’s very common for people with dementia to say they want to go home- they want to go back in time to when they felt safe.

You sound like you’re doing a great job in hard circumstances, but I’m not sure your DH is doing his DM any favours - wouldn’t she be better off in an environment where they have the equipment and experience to deal with this?

Thanks for the sympathy, it’s helped to be able to vent. She’s been here years now and I’ve helped her shower and stuff but we seem able to manage that with some dignity and lightheartedness. This was something else and just really upset me. We were both just so panicked!

This is the first time she’s been doubly incontinent, I think it was just a shock to me. She does wear incontinence pants (another battle that was left to me) and was wearing them but made no difference.

I guess DH thinks the more oblivious she is it will be easier for her and he’ll feel less guilty about putting her in a home. She’s often said she’d hate to be in a home.

Our respite has started today then she’s back to us for Christmas so I’ll see how it goes. If this double incontinence is now a thing I just can’t do it and the arrangements will have to be made. My DH knows that this was my line but is acting like this was just a one off. I’m not so sure.

Actually, it being the first time
Isn’t strictly true, I know she’s had the odd accident but she dealt with herself and I just did sheet changes, bin emptying and pretended not to notice.

Thanks for listening, I really appreciate it and will keep chatting x

As you say - it's not purely the double incontinence, which has in fact happened before; it's that she was cognitively unable to cope with it. I agree with you that really, you have reached the line.

Argh. I'm pushing. Backing off now. I'm struggling with my mum's situation and basically expressing my frustration.

Massive sympathy to everyone dealing with live-in relatives. I simply could not do it.

If I am speaking out of turn, please forgive me, but if the reluctance to countenance a home is fuelled on financial grounds, then a conversation has to be had.

I have no experience of what you are dealing with, but frankly it sounds horrific and the time has come to pay for others to take on the personal care in a setting other than your own home.

Your dh's attitude is not good.

I am so glad to read you have some respite for now.

@Hodibiddy your parents have every right to make their own decisions and refuse care. What they don’t have the right to do is expect you to make up the shortfall. What many of us have to do is stand back a bit and help parents understand the consequences, and that they really can’t cope. It’s awful for them, as we all know it’s a one way process, so I completely understand the “we’re OK, perfectly able to look after ourselves, just need a tiny bit of help from family now and again” mentality. But that doesn’t mean you should have to sacrifice your life to protect them from the realisation of their decline. But standing back is so hard - that’s one of the reasons we need a Bad Daughters’ Room.

@BippityBobbityBoo you’re doing something I could never have done, my respect to you.

But if she’s becoming messily incompetent, that’s something that can’t be safely dealt with in a family home. Also, I think moving between two houses is going to be increasingly confusing to her. The glib answer is to insist DH deals with incontinence matters - it’s his mum. But that’s not practical if it’s in your home. You need instant action, not when DH gets home.

It’s likely to happen again at BIL’s house, which may force the issue.

@BippityBobbityBoo that's a horrible shock for you to have to deal with and I can say from experience it will always throw you through a loop a little bit, even if it doesn't happen frequently.

I remember my mum asking me if I could give my dad a wash in the early stages of his decline...just top, pits etc, and I recoiled a bit as it seemed too intimate a thing to do. If someone had told me then that six months later I'd be cleaning and changing him and administering enemas I would have thought they needed certifying.

The problem with this situation is that regular visiting carers aren't much help as you can't time when someone has a bowel movement, or predict how dramatic the results will be.

I'm really cross at your DH on your behalf....how dare he say he doesn't want to hear about it?!

I suspect you will need to put your foot down hard in the new year.

@BippityBobbityBoo we all have our limits, mine was fecal incontinence through the house on carpet. That was the point where I went home and decided that I was never doing that again. I told The Family that I was stepping down to my original role as shopper and anything else was someone else's problem. MIL had previously declined the appointment with the continence nurse, preferring to buy "panty liners" (incontinence pads) rather than recognise the issue.

It's not fair that your husband doesn't get to deal with the consequences of his decisions. If you had been out he would have had to deal with it and if he's not prepared to do that then it's time for a family decision on future care arrangements. We can't pretend that everything is fine when it isn't but it's easier to deny reality when someone else is dealing with the hard facts of life.