Where do we go from here?

[GnomeDePlume]

Up until 4 weeks ago DM(85) was doing fine. Lived alone in a bungalow with family member close by calling in regularly (most days) for general chit chat.

Then she took a fall and broke her leg requiring surgery.

In these 4 weeks DM has declined so much. Her short-term memory is shot. She has stopped eating, she still chooses food but then just pushes it around a bit without managing more than a mouthful. She still drinks water but isn't interested in any other drink (she used to be a big tea drinker).

DM is now in a ward waiting for discharge to another hospital where she will do some physiotherapy.

It all seems too little, too late. She isn't getting out of bed. Her world has shrunk from bungalow, well tended garden, clubs, to the tray over her bed.

Is there any coming back?

I'm not sure what answers I'm looking for. It all feels a bit miserable at the moment.

My mother won't talk about it either @Projectme It's considered 'being negative'. It's very difficult, isn't it? 😔

DM is beyond having that sort of conversation now. Even if we were to have the conversation she would have forgotten what was said immediately afterwards.

Just before the surgery DM was asked about DNR. She said quite robustly 'I'm not ready to go yet!' but the surgeon explained the realities and a DNR was signed.

DM is now back at the care home in her old room with a nursing assessment booked for Monday. DM has declined significantly since going into hospital this time. She is no longer able to feed herself and bowel continence is now an issue.

I don't know if these things are permanent or just something which will take time to resolve. It is possible DM will be moved to the nursing care unit within the care home.

@WinterFrog it is probably easier to have these conversations (hopefully) further out. I have now started to discuss this with DH. We will be doing our LPAs in the next few weeks. I am intending to add an Advance Directive to decline any treatment other than palliative if I am unable to give informed consent.

I don't see this as gloomy, to me it is positive. I want to enjoy my life. However, I have always been someone who likes to leave a party early rather than staying to the end.

@GnomeDePlume I think this is a good approach to the future. Hard as it is there will be reoccurring emergency’s and at some stage enough will be enough for your DM. Having a plan is always a good idea. I hope you have a bit of time to yourself this weekend.

My mum is also past these conversations but fortunately (or unfortunately) she had made the same decision for my Dad at the same stage so we knew what her views are.

@GnomeDePlume we have also done POA and advanced care directive when we updated our wills a couple of years ago.
Our family do know our wishes.
My confusion is with FIL, he is 93 and lives with BIL but spends a week or more a month with us. He has always stated he was angry we took him to hospital 6 years ago when he had a brain bleed and needed surgery. He was upset we didn’t let him die then.
I had a conversation with him when he started staying with us regularly. He likes to garden and fix things so I asked him, if he keeled over in the garden, was I to let him go or try to resuscitate him ( remembering the conversation after his brain surgery).
His response was I could try to bring him back!
Now I hope I am not home if anything happens as what do I do?
Glad DM is back at the care home and being assessed for her care needs.
Might be time to discuss with DB and care team at what point do you transfer to hospital and at what point do you do comfort measures only.

@Weenurse that is such a hard choice put on you.

I was grateful that it was the surgeon who explained the realities of resuscitation to DM. I do wonder if people see dramas and see the sanitised portrayal of resuscitation.

Today is a day of allotmenting and sewing. Tomorrow I will visit DM in the afternoon when I may get to see her awake at last.

Much of my role in DM's care is to do the practical things. DB is retreating ever more from actual engagement with staff etc. He wants me to do that.

I think one issue is when you and your DH / partner aren't quite on the same page- my lovely FIL is 85 and so far doing really well and needing no care of any kind, but my H can't stand any mention of anything involving care, medical stuff, safety stuff etc - he finds it all 'totally depressing' and shuts it down as he says 'it doesn't apply now' - closest he has got was persuading him to move ( exchanging on Monday) to a bungalow 20 minutes away .

@Crikeyalmighty that must be so frustrating. DH shutting his ears and pretending it won't happen.

I do wonder if some people get stuck with an impression that one or other parent is immortal or unchanging.

There is the risk that decline or risk gets missed. Failing memory is dismissed as a temporary blip. Trip and fall hazzards get ignored.

My DB is caught by a few things: hates change of any sort, anything going wrong must be somebody's fault, he has to be in control.

DB does not want to accept that DM almost certainly has dementia. He doesn't want that to be true because if it is, things will have to change.

There will have to be an acknowledgement that DM no longer has capacity. The LPAs come into effect. The LPAs name DB and me. This means DB is no longer in control.

If DM has dementia then her 'non compliance' can't be blamed on DM being 'difficult'. DB would rather blame DM than just accep that this is the way of dementia.

Does your partner have siblings? If so please be careful how much input you try and have. My SIL pushed my brother every hard in certain directions for my mothers care and it's caused big issues.

DM is now settled back in her care home but is horribly tired.

Nursing assessment tomorrow. I do wonder if DM could do with a couple of weeks of bed rest. She is currently back in the residential section.

Poor little soul. She's had such a rough ride 😔 Hope you all get some rest this evening.
🌻

Thank you @WinterFrog the hospital were extremely keen to get DM discharged as they needed her bed. She had only just made it out of bed to sit in a chair the day before she was discharged. Mum had also not started eating independently.

Eating is once again an issue. DM is so tired that she cant summon the energy to eat.

We were keen for DM to return to the care home rather than be moved to the rehabilitation unit (not even sure if that was an option) as the atmosphere is so much better. It's a lot calmer with less of the hustle and bustle of a hospital ward.

Hope the assessment goes well for your mum today @GnomeDePlume.

We’ve got a bit of denial going on at this end - mums sister has booked a break for them both in April (on a flipping narrow boat of all things - don’t get me started on how that’s supposed to be a relaxing holiday for two 70 years olds, one of whom is starting chemotherapy tablets in the next few weeks!) and my brother and I have been asked if we can look after dad while she’s away. Fine in theory but my brother can only cover 3 days and I can’t commit at the moment as I have an important meeting that is due to take place that week and won’t get confirmation for another few weeks.

Mum’s response has been to say she’ll just ask the carers to pop in twice a day rather than once a day, totally ignoring the fact that dad pretty much can’t be on his own for more than a couple of hours at most. He has resolutely refused the suggestion of going into respite care too. I can see a falling out on the cards.

is Mum able to have those vitamin drinks like Fortisip or something? So that she's at least getting vitamins? and maybe some strength again to be able to eat food again?

I'm glad she's out of the hospital environment; she may recover a little quicker at the care home.

@cavemum that does sound so dismissive of your DF. I also have to wonder who thinks a narrow boat holiday is a good idea at the best of times - even worse in April when canals can be absolutely Baltic.

@Projectme DM struggles with the fortisip type drinks because they are milkshakes.

Nursing assessment process has started.

@CaveMum that's a lot to be worrying about 💐

@GnomeDePlume how is it going? Agree that the nursing homes are more restful. I do hope she's able to stay on the nursing unit as hopefully that would mean less likelihood of dashes to A&E.

So much for 'putting people in homes' that's so often bandied about. Like you, we've still been actively involved in our mum's care and decision making.

💐

@WinterFrog Thank you for asking. Things seem to be stalled a bit.

Food is an issue, DM is being fed by carers rather than eating by herself. DB is inclined to see this as laziness/being disobedient. Though he will allow the possibility that DM's eyesight is too poor to allow her to see.

What DB won't countenance is the idea that DM has dementia. So DB would be happy for DM to be moved to the nursing unit where she would be 'properly supervised'.

However, DM does not currently need nursing treatment so the home aren't likely willing to move her if there is pressure on rooms.

Another option would be for DM to move to the dementia unit with its higher staffing ratios. Not sure if DB will like that!

Option 3 is that DM stays where she is. If the home can provide the care she needs (and they do seem to be doing a good job of it) then DM does get a lot out of the social side.

All too much seems to circle around what DB wants/thinks.

Anyway, how are you and your DM doing @WinterFrog ?

The fast moving situation is rearing it's head again.

In the middle of the night DB got a call to say DM suffering chest pains so he called to let me know. Ambulance called. After doing some checks they concluded DM hadn't had a heart attack. However she has got a bad chest infection. Now prescribed ABs.

Fingers crossed for us all having a quiet night tonight.

The appraisal process for DM to have nursing care has started. Apparently it takes weeks to get done but DM may be moved to the nursing unit sooner than that.

I’m really sorry. It all sounds very hard.

@GnomeDePlume sorry that things are still so unsettled. Has she been eating better since starting the ABs?

Sorry this is happening @GnomeDePlume - we've been through all this with my Nanna who went from living independently aged 90 to literally being in a wheelchair and unable to really move herself in any meaningful way within a few weeks. She had a bad fall down some stairs and a stroke before she was found, then another stroke in hospital. This alongside a preexisting heart condition meant that we were told she probably wouldn't live longer than 3-6months.

She was shunted around the system of the hospital and then to a nursing home. 2.5years on and she's got a myriad of health issues including the original heart issue and another, new one, lung problems, has had four strokes and hardly eats or drinks; she's like a bird now, 5ft tall and at last count only weights 5 stone... yet still somehow she continues to hold on. Her quality of life is so poor and it's really pretty bleak. She tells my dad and aunt often that she wants to die. Despite the strokes and now not being able to communicate verbally very well, she has a clear understanding and no signs of dementia... she's actually pretty on the ball, which makes the whole thing worse somehow. She has a DNR and- alongside conversations with her NOK- has been refusing treatment for everything (up to and including refusing antibiotics for pneumonia back in October) but has recovered from everything acute by herself. It's baffling that the human body can carry on despite everything that she's had thrown at her.

As you said at some point, it's dying in increments really, and horrible to watch. She was a bit of an old cow really and endlessly arguing with someone in the family, but even-so she was a force of nature and seeing her so diminished is terrible. Wishing you love and light and the hope that your mum isn't suffering. It's not easy, especially alongside a difficult relative in the form of your DB (we've got a couple of those too!) so be kind to yourself.

@CaveMum thank you. DM only started the ABs last night. The lack of eating is just normal for DM now. She still enjoys the social side of going into the dining room for lunch and dinner. Just is no longer interested in food.

@LambriniBobInIsleworthISeesYa that sounds so awful for your Nanna and for you all.💐

Good morning! Just catching up with the updates. @LambriniBobInIsleworthISeesYa 💐
It's just one thing after another isn't it @GnomeDePlume 🌻
My mum is doing quite well, thank you. She's beginning to put on a bit of weight, and she's better orientated thanks to the routine and becoming more familiar with the staff.

As always, sending my best wishes to all who are in this position, and their loved ones ( even the awkward ones!) 🥂

@GnomeDePlume and so it continues. Your poor DM, she just can’t catch a break from it all and more stress for you and your DB. Hopefully the ABs will kick in quickly and she will feel better. It’s a tough situation there’s no doubt about that. Sending good wishes.

@WinterFrog I'm glad your DM is doing well in her home. It must take a while to reconcile oneself to it especially when it is forced by circumstances.

It's good that she is gaining some weight as well. The communal nature of meals does encourage eating.