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Elderly parents
Original poster

Where do we go from here?

510 replies

GnomeDePlume · 16/10/2024 23:25

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.

OP posts:
AInightingale · 06/12/2024 13:00

A couple of visits a week to a nursing home wouldn't put your brother out too much @GnomeDePlume, even if it does mean two buses, unless he is exceptionally busy. It's not like hospital where family have to continually run back and forth with washing/clean laundry and so on, and it's certainly not like them being in their own home, which was a bloody nightmare now I think back on it, the continual checking-in and worrying and buying groceries and fetching meds. The person should settle into a routine where their basic needs are met by staff, and I don't think it's realistic to expect family to visit every single day. Judging by these boards, a lot of us still have quite young families of our own.

HoraceGoesBonkers · 05/12/2024 22:38

@GnomeDePlume if he's got a few different options of getting there then that sounds fair enough!

Original poster
GnomeDePlume · 05/12/2024 19:38

@CaveMum how frustrating dealing with the appointments department. I'm glad you managed to get sorted in the end.

So worrying for your DM. Difficult to know what to do for the best.

💐

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Original poster
GnomeDePlume · 05/12/2024 19:31

@EmotionalBlackmail yes he can but that isnt what he wants!

Ho hum, families! I wont fall out with him. He is really doing a lot of heavy lifting so far as DM is concerned.

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CaveMum · 05/12/2024 19:20

Finally managed to speak to the hospital today about dad’s appointments. Had a really unhelpful lady in the appointments office who said she couldn’t speak to me without my dad being there to confirm I could speak on his behalf. Apparently having POA doesn’t count 🙄🙄🙄

In the end I phoned the urology department direct and a very helpful nurse told me everything I needed to know and only asked me to confirm my dad’s name, DOB and hospital number.

Mum has been told by her consultant that she needs to start chemotherapy for her lymphoma now. She’s been given the option of either a regime of 4 tablets a day for, well pretty much forever, or 2x tablets a day plus monthly IV drugs for 1 year. Understandably mum is worried that if she has the IV treatment it will wipe her out for several days at a time meaning she can’t look after dad. Trying to convince them to look at increasing carers visits around this time will be a challenge…

EmotionalBlackmail · 05/12/2024 18:23

Can he cycle there? If it's in the same town?

Original poster
GnomeDePlume · 05/12/2024 13:49

@HoraceGoesBonkers all the possible homes I am looking at are in DB's town.

My gripe (which I haven't expressed to DB in the interests of family harmony) is that he only considers his own convenience. He expects me to produce a care home within walking distance or on a convenient bus route.

I don't have that power!

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Original poster
GnomeDePlume · 05/12/2024 13:35

@WinterFrog thank you, that is reassuring. DM has to use the mo-lift (sometimes called a sack barrow) for moving between chair and bed.

Something I have noticed and mentioned yesterday is that after 3 months in bed DM has lost all core strength. To the point where she will slump to one side and won't be able to correct this.

DB has convinced himself that unless he is in control that it will all go to hell. He is very negative.

The care home I have been speaking with most does look really nice, purpose built with some nice gardens. Hoping they will have space for DM.

Only downside is that it will require DB to take 2 buses to land him at the entrance. The alternatives are one bus and a 20 minute uphill walk. Not quite sure what he is expecting me to do about that!

OP posts:
HoraceGoesBonkers · 05/12/2024 08:14

Dad's now been in the home for 2.5 years and I honestly didn't expect him to get through his first winter there!

HoraceGoesBonkers · 05/12/2024 08:11

I was going to say "make sure you check that family can visit easily" then saw your brother doesn't drive...

I can drive but still find the home my dad is in an absolute PITA. It's 45 minutes or more away, close to nothing, very little public transport so my Dad's friends can't ever just pop by, and visiting hours are a nightmare to fit in with the school run.

It suited my mum when he moved but if she gets ill (or when she has to give up driving) or the home has a covid/infectious disease outbreak then Dad is really isolated.

It is definitely worth thinking about how everyone will be able to visit easily.

WinterFrog · 05/12/2024 07:43

Ps you might want to reassure your brother that a good nursing home ( with on-site nurses) can be a great deal better than hospital. My mother has a very detailed care plan which we have reviewed, and they seem to be sticking to. It does seem to be well staffed. That's worth checking!

WinterFrog · 05/12/2024 07:35

@GnomeDePlume I am usually able to visit my mother during the day, and there is a noticeable difference in her, compared to the evening.
Is your mum having all care in bed or are they hoisting her out? Mine was hoisted in a sling to sit in a chair for a while, after three weeks or so. In rehab unit they used a sara-stedy to get her up, to the bathroom etc. She worked on a few steps using a zimmer frame to, during physio sessions. They have a sara-stedy at the home as well now, and can only use the zimmer under very close supervision.
She's awaiting a visit from the community physiotherapy team but no sign of anyone yet.
Best of luck finding a nice place for her. We also had to find a place accessible by public transport for one of my brothers, but within the town it wasn't too difficult.

Original poster
GnomeDePlume · 04/12/2024 20:40

@Anjo2011 having seen DM this morning I am actually feeling happier. I normally see DM in the evenings by which point she is tired and I do suspect there is a sundowning effect going on.

We were given best and worst case scenarios by the hospital. Best is that she will improve to be able to live with some assistance. Worst is that DM won't improve which will mean that she needs 24/7 care. IMO improvement will be limited.

DM seemed reconciled to the idea of going to a care home temporarily. We shall see if she can improve.

Only fly in the ointment now is DB. He wants the home to be convenient for him to get to by bus (he doesn't drive). This limits the options. He is still under the illusion that he can control the process.

@Randommother it is so difficult seeing how quickly condition is lost isn't it. I can see why physio/rehab is delayed but at the same time as each day goes by you do wonder what can be recovered.

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Randommother · 04/12/2024 20:02

Good luck finding the right care home @GnomeDePlume! I had a great visit with mum today, they’ve put her back on normal food so she ate well, and said it was the best day she’s had since she’s been in hospital! I’m not sure what’s next for her, she’s not having any physio / rehab at the moment due to her medical issues, but it’s over a month since her stroke and the longer it’s left, the harder it will be for her to regain any function on her left side…

Anjo2011 · 04/12/2024 19:44

@GnomeDePlume How are you feeling about the meeting? Have they said a care home with medical care is needed. We never got to the stage of looking for a care home so I have no advice. But I wish you all the best in your search and I hope you find somewhere that your DM is happy with ( or as happy as she can be). Best wishes.

Original poster
GnomeDePlume · 04/12/2024 17:01

Case conference today. DM attended which I wasn't expecting but actually made sense. She was on pretty good form all things considered.

Without saying 'we want her gone' the hospital were saying they want DM gone. She will have a couple more weeks to try and get some physio going but by then we need to have made other arrangements.

DM needs overnight care at the moment and that is likely to continue unless something spectacular happens.

So, care home hunting we shall go. Thankfully DM is self funding so we do at least have the illusion of choice. We did get advised of the things we should be asking about which was useful.

DD has agreed to come with me to look at some of the likely candidates. DB will be no good at this, he will pick holes and want things which aren't available.

DB is being a bit difficult. He still doesn't get that he can't control everything. He would prefer DM to stay in hospital and is sulking a bit because that isn't possible.

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EmotionalBlackmail · 03/12/2024 19:22

PotterHead1985 · 03/12/2024 13:32

It is interesting to read of how it is caring for a family member when there are siblings. I find at times I'm crying out for a sibling or other family member as I find it so overwhelming just being me, but then I think it may not make anything easier.

Siblings just create more work. They don't help.

Ironically mine only exists as my parents didn't want me to be dealing with their care needs alone (nice assumption there already!) so they decided to have a second baby, despite barely being able to cope with one. Sibling has been a pain all my life, I see him less than once a year and he avoids doing anything to assist but gets away with it because he's male.

Original poster
GnomeDePlume · 03/12/2024 17:06

@Randommother it is difficult isn't it.🌻

It does seem that food isn't seen as important in health care until it becomes a malnutrition issue.

It is a big but hidden problem for long stay patients IMO. It is especially overlooked in mixed wards where some patients are stuck for a while but others come and go.

I did notice in many of DM's various wards that food would be doled out then untouched plates gathered up without any comment. Fortunately the unit she is in now do take note of everything.

@PotterHead1985 I think ploughing this furrow alone as you are doing must be very hard. So hats off to you.💐 DB and I don't always agree but we are still pulling together.

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Randommother · 03/12/2024 14:53

Hugs to all going through this with their relatives, and good luck with your meeting @GnomeDePlume

Mums ward opened to visitors again yesterday after 8 days of being closed due to a norovirus outbreak, so it was good to get in and see her again. She’s struggling though, she can’t do anything for herself, and the nursing staff don’t have capacity to help. They’ve put her back on a soft food diet as she couldn’t manage to cut up a lasagne to eat it - she has full left side paralysis, there’s no issue with her chewing and swallowing 🤦‍♀️

PotterHead1985 · 03/12/2024 13:32

It is interesting to read of how it is caring for a family member when there are siblings. I find at times I'm crying out for a sibling or other family member as I find it so overwhelming just being me, but then I think it may not make anything easier.

Original poster
GnomeDePlume · 03/12/2024 10:30

@CaveMum I do wonder if some people (particularly the older generation) feel very uncomfortable challenging HCPs. Though it doesn't stop them complaining to all and sundry afterwards!

I hope you are able to get something useful out of the urology call.

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Original poster
GnomeDePlume · 03/12/2024 10:21

🌻🌻@WinterFrog and @BlueLegume

Without a doubt family dynamics dating back to childhood are coming through. DB1 is 'in charge'. DB2 feels left out. I do my own thing. Been like this since school days!

DB1 is doing the most visiting to be fair. He does interact with staff more than I do because he visits during the day (my visits are evenings and weekends). Not sure how much notice they really take of his helpful suggestions. I suspect a lot of nodding and smiling gets done.

For the meeting I suspect we will be told that DM has plateaued or is even on a downward slope. Then the question will be 'where next'.

This will be hard for DB1. He feels that the NHS should be doing more, spending more time with DM, jollying her along. Except they haven't the time or resources and DM is obstinate and hates being told what to do.

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CaveMum · 03/12/2024 10:09

@GnomeDePlume hope the meeting goes well tomorrow.

I'm fortunate in that my brother is equally involved in everything with my parents. He lives closer to them (but still an hour away) and is single so is more able to move at speed when needed than I am.

Spoke to my folks last night, dad is complaining that the carers are "untrained" and "don't know what they are doing". Mum told me that there was an incident last week where one of the carers didn't open the valve on his catheter correctly so his bladder wasn't emptying for about 6 hours before they noticed that the bag was empty. I've told dad that he/mum needs to say something but I think it fell on deaf (literally!) ears. We'll have to see.

Today's job is to phone the urology department as they've sent through two different appointments for dad a week apart without explaining what they are for...

WinterFrog · 03/12/2024 08:18

💐 @BlueLegume

BlueLegume · 03/12/2024 08:14

@WinterFrog @GnomeDePlume nodding along with your posts re family dynamics. I am really struggling ATM and suspect our brother may have referred to my sis and I as ‘middle class women of a certain age’ in the past day or so🤣🙄….no he isn’t called Greg. And yes I know that I missed the all important final g off. Solidarity to all.