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.

Thank you @WinterFrog . As you and @AInightingale are some steps ahead of me down this path I have been paying close attention to what you have said and will continue to do so.

I am sorry your DM is pressing your buttons. That is interesting about the reaction to different carers. I will keep that in mind.

In many ways DB has never grown up. He still wants DM's approval and cant see that in many ways DM (or at least the old version of her) is gone.

Morning @GnomeDePlume How's it going? Is he a single brother by any chance? The mother/brother dynamic sounds familiar. Mine mean well too. I've had to be willing to make the unpopular decisions for mother's well-being. And put them into action, and let them take credit for some things when it feels useful (to me) Bless 'em all.
How is mum settling in? Are you still feeling frazzled or has the move helped settle your insides? It took a good couple of weeks for me.
☕ 🍫 🍷 << covering all bases there!

@WinterFrog how could you tell!? Yes, he is single, never married.

Tea, wine and chocolate all gratefully received, thank you!

Since he retired, he and DM have spent a lot of time together. These last months have really thrown him. He couldn't control the situation.

DB does a lot more if the emotional support than I do. My forte is the practical.

DM is settling into the care home. It is a lot calmer atmosphere and not at all medical which makes it much more pleasant to visit. I don't know if you found this but I always found hospital visits stressful.

DM hasn't done any socialising yet. I worry a bit that DB is gatekeeping DM. He doesn't seem to be encouraging her to get out of her room even for meals.

How do you find visiting your DM? I visited last night then had to find someone to let me out of the door. The whole place had settled down for the night at 7.15pm.

🌻🌻🌻 to everyone in this situation. There is no useful guide book as every situation is different.

You are welcome @GnomeDePlume and thank you for the beautiful flowers!
There is a script somewhere for never married brothers, I swear. Hopefully the staff can help with room-leaving encouragement. It's still early days and she's probably knackered.
I haven't visited in an evening so I don't know what time they close up. It's definitely a much nicer place to visit than hospital, I agree. Mum is certainly more aware of time and place, and she's put on a little weight which is a good thing. She's seen a visiting physiotherapist now and the exercises have been put on her care plan, so hoping that her mobility will improve. I don't know if it's too late for her to be independently mobile after being off her legs more or less since the summer. I think she may get stronger but her balance is still quite poor. It's rotten for her really as she was previously so independent.

Onwards and upwards for us all, hopefully . Best wishes all round. I was wondering about starting a thread about having parents in nursing homes @GnomeDePlume What do you think?

I think a thread for posters with family members in care homes is a good idea.

I'm glad that physiotherapy is starting for your DM. This is something which has never got started for mine.

I do find there are few people to talk to in RL about this stage. The sense is that once the relative goes into a care setting the family can step back. Is that your feeling @WinterFrog ?

The pace has slowed, we are no longer in the crisis care of hospital. However there is still advocating to do. We are in the early days of getting used to a new regime.

Do you find yourself waiting for the next crisis?

At the end of the day, we know our relatives best. We can tell the subtle shifts in conversation which indicate that they are tiring or want something. No care setting can really achieve that.

In some ways it is easier for me than for DB. I can do practical things to help DM. I sew so I am about to make some new clothes for DM. Nothing complicated, tops and trousers. I can slowly update DM's wardrobe.

There is a thread rather darkly called “So bloody exhausted waiting for someone to die” which has a lot of posters with parents in care homes.

It’s not purely about those with parents near the end, it’s more about dealing with everything involved in ageing parents.

Thank you @CaveMum good to know

The pressure definitely eases off once your parent is in a care home. I was expecting constant phone calls but have only had two in three months - one to say my mother had norovirus, another to say they'd started her on antibiotic for a bad chest.

It feels a bit strange to realise that you never have to get food shopping again - I'm still having to shake off that feeling in the supermarket of 'what does she need?'. The only things we need to provide now are toiletries, and as my mum has stopped snacking, we're not buying biscuits or sweets (I don't think they approve of this anyway because of the choking risk.) And assisted living was also a lot of phonecalls for this,that and the other - 'your mother has run out of teabags' and such like. My brother had to drive 8 miles once to change a lightbulb in her living room because it was the 'tenant's responsibility'.🙄 It has got easier, but that's not to say I don't expect crises in the future.

I'll go and look at that one too. Thanks.

Still early days for us too @GnomeDePlume Four weeks rather than four days. I'm feeling quite conflicted if I'm honest. I was hoping to see her and enjoy her company more often, but I am feeling the urge to back off a bit now. I'm finding the carers are behaving as though they know her better than we do, and that's frustrating. Mother's in some denial about her frailty and she's evidently confused. The carers are so set on being positive that they won't acknowledge it even when she's not present. So i find myself wondering if her confusion, in particular, is just my imagination. They just don't spend that much time with her, and she can hold it together in short bursts. I did finally get them to pay attention about a particular safety issue, but only after the physio said the same thing I (and brothers) did.
They're all about person centred care, which translates to asking her what she wants every step of the way, so she's decided they're all idiots who need her to tell them what to do. I used to be a carer and her complaints about them really press my buttons. I did work with some who were really bossy with families and it irritated me then as well, but I also know how hard they work to look after the residents.

And I know that it's in part due to her condition, but I find it frustrating AF when she wants to do things, won't let me help, then complains that the things aren't done. She's been like this for some time but it's ramped up since her stroke.

The toiletries thing is odd. We've figured out for ourselves now what is/isn't provided, but I was a bit startled when they gave her toilet paper for her to blow her nose on when she had a bit of a cold. I have to wonder how residents without families to provide these things cope. And also would have appreciated a list of what we're expected to provide.

I think what i need to do is let her settle, pop in when I can and let them take responsibility for her but that's really hard after several years of being at her beck and call so she could remain 'independent' at home. It should be a relief but instead I feel sad.

As @AInightingale said, not having to think about grocery shopping, and not receiving updates is quite unexpected. I guess this is a change that we're all having to come to terms with, not just our parents.

The other thing I've noticed is how institutionalised she's becoming. Her life is revolving around the home 'gossip', the chats with the carers, who said what at her dining table, and she's lost interest completely in what her family are doing ( she has grandchildren and great grandchildren) Again it makes sense that her world has grown smaller and intellectually I understand but emotionally it's feeling quite difficult.

I've just returned from visiting so feeling particularly emotional about it all. The main thing though is that she is safe, content ( mainly!) and being cared for. I'm a big girl and I shall get a handle on it, but today feels hard.

So all the 🍫 this afternoon, and i shall raise a glass to you all ( and our parents) this evening 🍷
🍷 🍷 🍷 😂

@WinterFrog that does sound very hard for you. Especially with your DM getting less interested in you, her family.

With my DM I think we are well beyond that point. DM is either in the moment or 70 years ago. But I do remember the first time DM forgot about my birthday as being very hurtful. DM had always made a big thing about birthdays being important (especially hers!).

DM's issues with frailty are getting slowly worse. Pretty soon even the mo-lift (sack barrow) is going to be beyond her.

Good news! DM made it to the dining room for lunch! DB was late arriving so staff took mum along. Apparently had a nice time and ate well.

Good to hear mum's made it to the dining room @GnomeDePlume I hope it gives your brother some confidence. Are they hoisting her into a wheelchair? Mum's ok with the sara-stedy to wheelchair at moment. Would bed- care follow for your mum if she could no longer cope with the hoist? Is it hurting her?
I'm feeling more myself again today. I think we talked about acceptance upthread, and for me it's an ongoing process. Mum is aware enough to know where she is and why, but is anticipating a miraculous recovery despite being reluctant to do the exercises the physio has set her. She still talking about looking forward to getting home, and doing some gardening, as if it's a foregone conclusion. I can feel my heart rate rise just thinking about responding to that. So far we're just kicking the can down the road and suggesting she thinks about it after Christmas, once the weather improves and so on.
I have a people-free afternoon here and I'm off to spend the rest of it with my nose in a book.
Best wishes to all ☕ 📙 🌻

That is so difficult for you @WinterFrog . Do you think at some level your DM knows that she can't live independently now?

It is so difficult when you know the reality is that where they are now is actually the best place.

DD and I visited DM today. She was in a lot of pain from what I think is a pressure sore. However, my Christmas present was a sheepskin. With some help from staff we were able to get it onto her chair. Result!

So sorry about your mum being in pain @GnomeDePlume 😔 The sheepskin sounds like a good idea. I hope the staff are managing it properly. Pressure sores must be so painful.
I am not sure what my mum really thinks. She's never been one to admit defeat, and I have to admire her indomitable spirit. Home would not be as comfortable as her lovely room with the large bathroom. I think what she's really missing is her independence, but home would give her less, not more, of that as it's not so well set up. It would be all compromise, with a commode and no chance to shower as the bathroom wouldn't be able to accommodate her hoist or wheeled shower chair.
It's all so sad isn't it?

There is a feeling for me of 'this is it, this is where it comes to'.

The lifetime of childhood, jobs, raising a family, retirement, comes to a stop in a care home.

I don't know if you garden? We have an allotment, we often joke that it should be called Next Year as we spend so much time saying 'next year we will do XYZ'.

Now for my DM there is no Next Year. She doesn't seem to be able to look forward and the past is a jumble of memory fragments. So all she has is now.

When my DM was saying she wanted to go home. I think it became a dream of home, an idyllic blend of her bungalow and her childhood home all in summer time.

The reality would be as you describe: commodes, carers coming in, adaptations. All compromise.

Visited DM this morning. She was happily sat in the main lounge enjoying a mince pie and a milky coffee. The milky coffee is relevant because for as long as I have known DM she has always had black coffee.

DB is very insistent that DM needs a different chair for her room and is quite cross that the care home haven't magicked one up for her. Having spoken with the care home myself they have advised that a number of residents have their own chairs.

DM admitted to DD today that the chair she has is fine it's just that my two DBs startled her awake yesterday which put her in a contrary mood.

If DM wants a different chair there is no problem for us to provide it. However no one is going to pull one out of their left ear in Christmas week.

Both my parents developed different preferences in care homes Dad started taking sugar in tea and I was in once when he got quite cross with a member of staff who forgot. And my mum started eating mushrooms which she had always hated. We'd told the care home this so they offered her a different soup and she was adamant she wanted mushroom like everyone else. I'm guessing it was related to the dementia

Glad to hear your dm is sounding a bit more settled @GnomeDePlume.

I went to see my mother today and the home is in the middle of a flu outbreak, everyone masked up and old people coughing their heads off. I don't think the vaccines have been very effective this year and the damn thing is everywhere.

Couple of our hospitals locally are already under 'extreme pressure' with v long corridor waits and the most I'm hoping for until the end of January is that my mother doesn't have to attend one for any reason.

I do wonder sometimes if our parents developed aversions to things (mushrooms, sugar in tea, milky coffee) as a way of annoying their kids. Come dementia and the need to wind up the kids fades.

Fingers crossed that everyone can keep clear of hospital

Wishing you all, and your elderly parents a very Merry Christmas! We’ve finished opening presents here so I’m going to shower and head to the hospital to see mum. There’s another noro outbreak on her ward so it’s been closed for over a week (again) but they are allowing us in today and tomorrow. I’m hoping she’ll be moved out from hospital to a care home at some point early in the new year, from reading everyone else’s posts it sounds like a much calmer environment.

All good wishes for your DM @Randommother . My experience so far is that the care home is a lot calmer. The focus is more holistic than hospital which IME is very siloed.

I've been reading but not commenting, interested because of MIL although we are not quite at care home stage yet but she is struggling at home and refusing to give in. Best wishes to everyone.

Sending best wishes, hugs and patience to all today and in the coming days.

Sorry to hear about the noro virus in the ward @Randommother Miserable for everybody. My mother had a patient with covid in her hospital ward at one point, but they kept it contained, and we just had to wear ppe when we visited. Nobody else caught it, so it was over and done within a week thankfully.

It's definitely calmer in the nursing home but also a feeling of just looking after the residents as they are, so that's a big change from the rehab unit. Mother is meant to be up on her feet and walking, in an attempt to build her muscle strength. But they also don't push it because they have to give people the choice. So mother says no, she'd prefer the sara-stedy, and so that's how she travels. In rehab it took one carer but in the home she's what's known as a 'double-up' meaning two carers for mobilising her. She's had a cold though, so is extra tired. Hopefully come the new year she'll have a bit more get up and go.
@DaisyStarburst it seems very few older people willingly sign up for residential care. It generally takes either a hospital admission ( mine had a stroke and @GnomeDePlume's broke her leg)or family carers burn out from trying to hold it together. My poor mum is still expecting to recover and go home but at the moment it would be impossible without 24 hour care. I can't see that changing quite honestly but it's really hard to tell her that.

Love and best wishes to all on here. I hope everyone plus their loved ones had some joy over Christmas 💐 🎄