Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Elderly parents

Cockroach Cafe - come and try our new sunroom

989 replies

MereDintofPandiculation · 20/11/2021 20:45

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.

OP posts:
Thread gallery
6
Cherrysherbet · 17/01/2022 11:16

Hi all, I’m so overwhelmed by all your replies. Thank you so much for taking the time to offer your advice. I appreciate it so much. I’m at work atm, but will read through all your comments properly this evening, and reply.

Many thanks again.

BestIsWest · 17/01/2022 12:06

Minty that is an incredible post. Flowers

IthinkIsawahairbrushbackthere · 17/01/2022 12:09

Hi @Cherrysherbet I am on the other side of the care situation now - my mum went into hospital in June and is now in residential care - she has dementia and severe arthritis.

Like you we lived with my parents - they lived in our garden. My dad died when mum was 76 and my youngest daughter was 11. Mum's mobility meant she needed care from me and support as dad and the family had been the focus of her life. I had to give her breakfast in bed, get her dressed, do all the cleaning and washing, shopping, take her anywhere she needed to go. I had to tell her when I was leaving the house and when I would be back. She also wanted me to spend every Saturday with her and every evening until bedtime because she was so lonely. That was nine years ago and of course her body deteriorated and slowly her mind did too.

Much against her wishes I begged for support from Social Services and in March 2020 we had a care package of two calls a day to get her up and put her to bed which made a big difference to my mental health. I had to pay towards the carers because in mum's eyes they were there for MY benefit, not hers. She didn't need them.

The pandemic masked things for a while but by the September the two of my daughters still at home had gone - one got married and the other left for university. My husband was back in work and I was trying to study for an OU degree and fielding up to 10 calls for attention every day - along with doing all the meals, washing, cleaning, sitting with her for an hour in the afternoon and all evening. She would also phone me in the early hours of the morning/late at night to complain that the carers hadn't been with her breakfast, unable to work out for herself whether it was 2.00 p.m. or a.m., even after I bought her a Grow clock and set it every night.

In June last year she had a fall in her bathroom. Thanks to support from the carer who called that morning she was taken to hospital for assessment. The next day I broke down completely and the next few days are a blur. I know my husband came home early from work because of the increasingly bizarre calls I made to him and my friend took me to hospital. After that I don't really remember much for a week.

On the advice of experienced and supportive friends we told social services and the hospital that we would not be providing any personal care and we would not be able to support her overnight (every call from her required me to go outside whatever the weather, down the drive and into her annex) but if she was able to mobilise from her bed to her ensuite bathroom or a commode and back into bed we would be able to manage with four calls a day.

Within a week they had assessed her and realised she could not get into bed by herself and she was referred for rehab. Once in rehab it was clear that her lack of mobility was not just arthritis but also dementia and she moved into a nursing home in October.

I am slowly coming to terms with my new life. I love living with my husband - turns out he is a decent bloke! I still feel guilt - guilt that mum is somewhere that she doesn't like, guilt that I have not been able to bring her home, guilt about missing so much time with my youngest daughter and guilt for being happy with the life my husband and I now enjoy. Seven months since she was at home and I still feel that anxious feeling as I check the tv schedules to see what I can put on the tv for her at bedtime. I barely leave the house because I have been conditioned to stay at home in case she needs me. In many ways I'm a mess. But I will get better.

Remember that your mum now is the best she is going to be. Caring is only going to get harder. I know it sounds like people are trying to put you off doing it and you have every right to do what is best for your family. I have no doubt it can be rewarding but for me it was exhausting and distressing and now the lady who is left bears very little resemblance to the mum I knew and loved.

IthinkIsawahairbrushbackthere · 17/01/2022 12:10

@NewYearNewMinty your post brought tears to my eyes. You write so beautifully.

NewYearNewMinty · 17/01/2022 15:48

I barely leave the house because I have been conditioned to stay at home in case she needs me. In many ways I'm a mess. But I will get better.

hairbrush you certainly harder than me physically. My mum, for all her faults, has always been practical and houseproud to the extreme so I didn't have to cope with the washing, cleaning etc side of things.

As you mention above though, the emotional toll is devastating.

SuperDiaperBaby · 17/01/2022 18:15

@MereDintofPandiculation hope all ok with you today.

whatever45 · 17/01/2022 21:17

Just read everyone's amazing replies. No words, just sending a big hug Thanks

Cherrysherbet · 17/01/2022 22:06

Well I’ve just sat and read all your posts carefully, and I’m in bits.
What many of you have been through is exactly what I am expecting this to be like. I feel I have no choice that doesn’t lead to a lifetime of guilt.
To answer a couple of questions… it is our shared house we would be bringing mum home to. We have lived here for 34yrs (I was 14 when we moved in). My dh moved in when I was 18. She has a bedroom and lounge at the front of the house. The hospital bed and hoist have been set up since early November. We have waited day by day since then for the care package.

When she went into hospital, she was confused, but knew where she was. Now, she doesn’t know she’s in hospital. She doesn’t remember home, but there is recognition on her face when I show her photos of home. She knows us.
She hasn’t had a diagnosis of dementia, as they won’t do it until she’s in her own environment. She clearly has a type of dementia though. She has two teddies that she talks to, she thinks they’re real people. She gets very distressed at times, but is never aggressive or nasty. The staff love her! She is a real character, and very placid.

As suggested here, I could draw up a pros and cons list. I would have a whole list of cons and just one pro. The pro would be that mum would be home and in our care. There are no long term pros for me and the rest of my family.

I suffer with anxiety, and this goes hand in hand with overthinking everything. Over the last 5.5months of her being in hospital, there is not one negative point about her coming home that has not popped into my brain multiple times. I am already exhausted.
As she is only 76, this could be for the next 10yrs + That scares me to death.
She has been cared for by two people each time
in hospital. At home, when dh is at work there will be just me. I don’t even know if I can physically roll her over by myself.

The way she is atm in hospital is lying in bed 24/7. She was in a chair when she went to rehab, but after she had a gall bladder infection in October, they stopped the rehab and just left her in bed. No medical reason why she needs to be in bed. The type of armchairs they have don’t support her, and they don’t have recliners in this hospital.
Now they are saying she is starting to get a bed sore.
After Christmas, I had a wobble and almost agreed to her going into a home, but they made it clear they will not fund a nursing home, but a care home. I think her needs are too great, due to being bedridden and possibly developing a bed sore. So we went back to having her home.

The care homes in our small town don’t have good reputations. Others are 10+ miles away. She would have to quarantine for 14 days, and i know her confusion would be awful. If she can’t even get out of bed, will she just spend the rest of her life in a room on her own?? She has been in the same room in hospital since August, so she is settled. She spent 3 weeks in a different hospital at first, and they were so unkind to her. She went downhill so much. I can’t see her like that again.

I 100% know bringing her home is not the right decision for me, my dh and children. Everything you’ve all said is true, and I believe we are just about to make the biggest mistake ever, which is ridiculous. I’m definitely not going into it with my eyes closed, but I feel like I have to live it to know that eventually a care home is the only option.

Thank you so much for sharing your stories with me. IRL nobody is very honest! I have some good friends, who are very supportive, but they haven’t lived it like you all have. I appreciate your honesty. I have some really serious worries in my head about all this, and it helps to get it written down.

NewYearNewMinty · 17/01/2022 22:31

I feel like I have to live it to know that eventually a care home is the only option.

I can understand that, and there are many factors that may help in your situation:

The fact that you will be in charge. A lot of my stress was (and still is) caused by differences of opinion with my mum and her constant need for emotional support when I really wasn't in a position to provide it.

The fact your mum already lives with you and has plenty of her own space.

Your description of your mum is lovely. I often felt I would have found it easier to care for my dad without mum's stressing but she did do a lot of the practical stuff so I guess it's swings and roundabouts from that POV.

It sounds like your DH is supportive which must be a huge help. I'm divorced and if I'd still been with my XH he would have made the situation 1000x worse.

There will be good bits that make it worthwhile, but do try and engage with as much support as possible. I'd strongly urge you to look into respite options too, to give you a break a couple of times a week and maybe for longer so you can spend some quality time with your DH and kids during the school hols for instance.

Cherrysherbet · 17/01/2022 23:21

Thank you minty

Don’t get me wrong, as much as I love my dm, we are very different people!

As I said, she is placid, but I can get stressed quite easily. She has always been the kind of person to let others do the work. In her job she was able to delegate, and did it well! At home, my dh and I have always done the housework etc…. Tbh she didn’t keep herself mentally or physically active, which has largely contributed to where she finds herself now. This was probably always going to happen, but I didn’t realise how sudden and soon it would be!

We are used to living with her, and she has always expected to be considered before we could go away. Didn’t want to be in the house on her own since my dad died 11yrs ago. She has always been quite needy! but I’m aware that this is a whole different level.

I don’t think we could afford respite. I’ll look into it, but because of her needs, I’m not sure we’d be able to get it. I am willing to work around things as much as possible though, to make sure dd still gets to do things.

I think we’ll know within the first couple of weeks if we can make this long term. I’ll give it everything, but will try to be sensible and realistic, for the sake of everyone in the family.

It will just be a relief at this stage to get her home, and to not have to worry about hospital visits!

I wish dm had the capability to be part of this decision. That’s what makes it harder.

We’ve had no support from anyone up to this stage. The hospital don’t communicate very much with us at all. We’ve had to try to figure all this out ourselves, and I guess that will be how it is going forward.

I feel drained and confused.

I’m glad I’ve found a place where others can understand how it feels. Means so much. Thank you for taking the time to help.

countrygirl99 · 18/01/2022 05:19

Cherry speak to Age UK. My ILs have ground them to be very useful in finding help, financial snd practical.

PermanentTemporary · 18/01/2022 06:06

Makes absolute sense Cherry. The assessment of her needs sounds quite wrong but I see exactly why you are where you are.

I wonder if a specific email or call(s) to the occupational therapists (leaving messages ++ until you do speak to them) would mean you could go in and be observed by them trying to move her on your own. It sounds incredibly risky.

PermanentTemporary · 18/01/2022 06:09

The hospital social worker who originally assessed my mum thought she had no nursing needs at all. Since 48 hours after she left hospital she's been on 1:1 nursing and things have only improvedsince she got to a specialist environment. I don't understand what their assessments consist of tbh.

Onewildandpreciouslife · 18/01/2022 08:08

@Cherrysherbet there should be a complex needs discharge team assigned to your DM at the hospital- please try to get to speak to them. That should include a social worker, I think, but if not please contact adult social services at your council.

Social services will be delighted you want to take DM home, but if you’re thinking you’ll try a couple of weeks to see how it goes, and it doesn’t work out, it might take a while to find an alternative. So I’d suggest you get “in the system” as soon as you can.

And please keep posting here

MereDintofPandiculation · 18/01/2022 08:11

[quote SuperDiaperBaby]@MereDintofPandiculation hope all ok with you today.[/quote]
Thanks, yes all well.

Dad has now been declared back to normal, no likelier to die than any other 99 year old. So I’m back to normal visiting, ie, no visits at all because the home is closed through Covid.

Much prefer them to get it wrong and alert me when he’s only got a passing infection, than to think “oh he’ll be better tomorrow” and get that wrong, but it still feels a bit of an emotional roller coaster.

OP posts:
NewYearNewMinty · 18/01/2022 11:19

@MereDintofPandiculation glad your dad's on the mend.

@Onewildandpreciouslife makes a very good point about social services and their reluctance to get involved.

Because my dad's care was classed as end of life his carers (2 x twice a day and a companion a few hours a week which is a whole other story Hmm) were funded by the NHS.

When we contacted SS to see if we could get any support, mainly for mum and I, their attitude was 'his cares already being funded by the NHS...nothing to do with us'. We didn't see a single social social worker for the entire duration.

@Cherrysherbet you mentioned not being able to afford respite but perhaps this is something SS might be able able help you with if you don't have other care funding in place?

IthinkIsawahairbrushbackthere · 18/01/2022 12:48

@Cherrysherbet I know the availability of services varies throughout the UK but in our corner it is nigh on impossible and there is a long waiting list for support. Before it was decided that mum would need respite she was waiting for weeks for the increased care package.

I would honestly say to be very, very careful about bringing her home with the thought that if you can't cope then she will go into a home because you could be waiting a very long time for more support.

If you or DH can drive then I wouldn't worry about the home being a little further away. The home my mum is in is 8 miles from our house but a 2.5 hour bus ride! I only visit once a week and I get a lift with my cousin or my best friend. We were offered a place closer to home on a bus route but declined because I have not heard anything good about the home. We accepted this one because it has the best reputation locally even though it is not so easy to get to.

You honestly sound like you could be me! The similarities between our home situation is so similar.

Whichever road you choose to take you can rest assured that you are a fantastic daughter and have already gone above and beyond the care that some provide.

MoreElderlyParentWoes · 18/01/2022 12:49

Hello all and welcome, Cherry. I don’t post here very often but I lurk.

I endorse everything Minty says. I’ve been struggling to support my mother since my father died several years ago, and something that really resonates with me is not really being present for my DC’s adolescence. I was always busy doing things for my mother or simply too unwell to help anyone. Self-diagnosis is highly unreliable, I know, but I believe the last few years have left me with PTSD. I weaned myself off ADs but, when I needed them again, found my body wouldn’t tolerate them so now feel on the verge of collapse.

This is a well-worn theme here, but any more suggestions of what to do when a cantankerous elderly parent identifies lots of problems but then rejects each and every possible solution?

thesandwich · 18/01/2022 13:36

So pleased to hear your news@MereDintofPandiculation.
Brilliant honest advice for @Cherrysherbet .
What to do when elderlies complain but won't take on board potential solutions.....
Ask them what they want/ expect to happen
Grey rock
Do it anyway
Get someone they listen to to suggest it... or say doc insists...authority/ doc/ nurse/ friend
Or my favourite when dm is sliding into the vortex of doom was coined by picklemewalnuts I think.... toddler distraction.." oooh did you see the squirrel/ bin man/ robin etc"......

NewYearNewMinty · 18/01/2022 13:55

@MoreElderlyParentWoes

Sending wine and hugs.

I feel absolutely broken by the last 2-3 years. The last increase in AD's is helping me function a little better but I'm suffering intermittent horrific panic attacks.

I was due at my 'auntie's' funeral today but had to message with my apologies. I just couldn't face a 2 hour round trip and the emotional impact of the service itself.

As for any more suggestions of what to do when a cantankerous elderly parent identifies lots of problems but then rejects each and every possible solution?

Accept it.

I've come to the conclusion there's nothing else I can do. I, and others, have made multiple suggestions to mum about joining things and meeting new people. I've offered to take her even.

Have suggested things she can do at home to occupy her mind but she won't engage.

It is what it is. I am now job hunting, and although primarily looking for part-time I've also applied for a f/t position as the job itself sounds ideal and let's face it I could use the money.

If mum won't help herself and has capacity there is literally nothing I can do.

Onewildandpreciouslife · 18/01/2022 14:06

@thesandwich I used to refer to “ooh look a squirrel!” (I used to be “toofaroutallmylife” but I’m trying to be more positive these days!) but I’m sure many of us have tried the same tactic!

thesandwich · 18/01/2022 14:26

@Onewildandpreciouslife ahh! Source of squirrels! Like the new name.
I’ve found it v helpful….

notaflyingmonkey · 18/01/2022 15:46

Yes, the squirrels have come in handy on many an occasion when I was facing a brick wall.

MoreElderlyParentWoes · 18/01/2022 17:19

Thank you, everyone.

I haven’t yet tried pointing out the garden wildlife (anyone got a spare cockroach?) but my life is pretty much all grey rock. Perhaps at root I’m another Bad Daughter, because I suspect the reason my mother won’t countenance (eg) having carers is because she hopes I’ll give up my job and do it all myself. I couldn’t. It would be the final straw for my health.

Knotaknitter · 18/01/2022 18:04

@MoreElderlyParentWoes we've talked about it before, the illusion of independence. It's easy to dismiss care given by family as not really being care, you just popped in for a cuppa and did a few things while you were there (cleaned the house, prepared a meal, supervised a shower, tackled the garden). If you are paying a carer to come in then there's no getting away from recognising that as care.

@MereDintofPandiculation I'm glad to hear that things have gone back to being normal.

Swipe left for the next trending thread