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Elderly parents

The Cockroach Cafe 🪳 Spring 2023

971 replies

MereDintofPandiculation · 02/03/2023 09:21

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

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 🪳 mes amis/amies, and may you all live to fight another day.

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Newmum738 · 18/06/2023 19:25

Thinking of you @thesandwich

Malbecfan · 18/06/2023 21:19

@thesandwich I hope tomorrow goes as smoothly as possible for you

Newmum738 · 19/06/2023 07:31

FiL has been in hospital for 2 months now. We went to see him yesterday and he was very tearful. He had a stroke before Christmas and now can't walk and has extremely limited use of his hands. The hospital doesn't seem to be doing much and I think he can't see himself coming out (I can't either). Any thoughts on how to help him handle the depression? Can you believe MiL has only been to see him once! She doesn't seem concerned at all 😳

DrBlackbird · 19/06/2023 11:19

@Newmum738 sorry to hear about your FiL. Can he be moved to a rehab hospital where he’d likely get a bit more physio / OT? This is what they did for my MiL. Originally just going to discharge home from hospital but when we said she’d not manage found her a bed in a rehab place. Never knew they existed.

She doesn't seem concerned at all 😳

A cavalier attitude to my FiL’s terminal cancer was one of the positive signs of MiL’s dementia, which she had more or less successfully masked up to that point. She was refusing a stair lift for this poor man, but could seem quite lucid.

GordonBennett345 · 19/06/2023 12:42

My mother is currently in a rehab ward in a community hospital. Not convinced she's getting any physio at all. And she has no idea what she's doing.

SheilaFentiman · 19/06/2023 12:54

Newmum738 · 19/06/2023 07:31

FiL has been in hospital for 2 months now. We went to see him yesterday and he was very tearful. He had a stroke before Christmas and now can't walk and has extremely limited use of his hands. The hospital doesn't seem to be doing much and I think he can't see himself coming out (I can't either). Any thoughts on how to help him handle the depression? Can you believe MiL has only been to see him once! She doesn't seem concerned at all 😳

DM has not seen DF since he went into the care home nearly a year ago. Even though they would have brought him to her. Words cannot express the suppressed fury I have about this.

IthinkIsawahairbrushbackthere · 19/06/2023 14:11

@GordonBennett345 I have no idea if my mum actually had physio when she was in rehab. She said she didn't but was totally unreliable and confused by her surroundings

@SheilaFentiman My parents had been married over 50 years, very much in love, but when dad was diagnosed with cancer my mum refused to visit him in hospital because "she wanted to remember him as he was". He died just two weeks after his diagnosis and she told everyone that it was an agreement that they had had. I stuck up for her at the time but having been quite poorly myself I have thought about they way she was and am absolutely baffled that she would choose to protect her feelings rather than consider his and she had no desire to say goodbye. She is in a nursing home now and isn't aware that dad is dead (he died 10 years ago) but I am having to deal with my own anger that she didn't want to see him.

Newmum738 · 19/06/2023 19:30

@SheilaFentiman @IthinkIsawahairbrushbackthere it's so alien to me to not want to be there for them. I guess we are all different!

I've offered to take her at the weekend and she's accepted so that's something. DH has also been trying to get hold of the consultant today to find out what's going on. I feel like they are just dragging their feet because they don't know what to do. I'm the meantime, the poor guy is going crazy just lying in a hospital bed 😳

SkeletonGhost · 19/06/2023 22:35

Evening all - hope you don't mind me joining this thread! NC to avoid other threads/posts being linked, but have been around MN for a fair while.

Recently took on the role of a live in full time carer for an elderly relative, and I'm full of regret. It was supposed to be for her benefit - financially, keeping a closer watch, more personalised care by someone who knows her, able to create the memories we missed making with her husband (quick death following a surprise covid diagnosis a couple of years ago)... especially as care wise she doesnt need washing, hoisting, moving yet.. and in like - it would benefit me as a break from my incredibly stressful and toxic workplace, give me time and space to figure out my next steps, and create those happy memories.

She has had dementia diagnosed for about 7 years now, and was showing signs in the couple of years before that, but between her and her husband, it was masked/managed well.

She always was an odd person, erring on the side of abusive, with a healthy dose of gas lighting... and I had completely forgotten/blanked out just how bad it was.

It's as though all the good parts of her have gone, and she's just been left a confused, spiteful, vicious mess of a person. Still emotionally manipulative and abusive.

Anyone else who has come to sit with her while I've nipped out for an appointment of my own, and the day centre/cafe she goes to once a week - can't speak highly enough of her. She's a delight, funny, happy, singing, joyful, a good laugh, pleasant...

They give me the crazy eyes when I say that I'm glad she has been so lovely for them, but she sounds like a different person. The side eyes, the sceptical expression...

It was really tough last night, and I felt feelings of wanting to hurt myself for the first time in many many years. I didn't, and wouldn't, but I wanted to. And not to end anything, just for the brief moment of silence it gave. And all that was going through my head at 2am this morning was her laughing in my face, being sarcastic, passive aggressive, and generally a bitch.

And I can't say any of this to anyone in real life. They all say "oh its just the dementia, you have to make allowances". Or "you're doing such a good job looking after her".
Or they just don't believe me. Or will think I'm a horrible human being.

Except it isn't just the dementia. The dementia has just removed what small filter she had for me. Somehow she still puts her "public face/mask on" for other people.

And tomorrow is the day centre day. Which gives me a few hours reprieve from it all. Other than the vitriol I'll get in the morning encouraging her to get up/ready and breakfasted to go out.

I'm not even sure if this is the right place on MN to post - please let me know if it isn't and I'll get it removed.
I just have nowhere else to turn, and I scared myself last night.

TheShellBeach · 19/06/2023 23:53

@SkeletonGhost I also found myself in this position. It was absolute hell. Nobody else seemed to see this side of her.

I think you should make plans to leave. I don't know your circumstances but surely you can go back home? I did, to everyone's surprise.

It was the best thing for me. Also, the next person who moved in with the lady phoned me after three days and she was already at the end of her tether.
My "sweet old lady" was doing to her exactly what she'd done to me - complaints about everything, especially the food. Refusing to pay for anything. Making rude personal comments. Being spiteful.

You have my sympathy.

notaflyingmonkey · 20/06/2023 06:35

@SkeletonGhost don't stay, it will break you.

SkeletonGhost · 20/06/2023 07:13

@TheShellBeach sadly, it all coincided with a break up and house sale on my end as well, so this is home for me for the foreseeable unfortunately.

I have managed to book a GP appt for her for next week, so I'm going to see if there is anything they can help with as she isnt medicated for anything relating to the dementia at all either..and despite being a total... wotsit... she is compliant with accepting her medication and taking it.

@notaflyingmonkey that's what I'm worried about, but I was also at breaking point before this, in a different way. Either way I feel about to break..

Knotaknitter · 20/06/2023 08:39

@SkeletonGhost The receptionist at the GP should be able to point you to carers groups, our surgery has one meet there once a month. I would suggest that you make sure you are registered yourself, also registered as a carer and get an appointment for yourself too.

I am fortunate that I have the other side of this, MIL no longer recognises me so I get the the manners that are reserved for strangers rather than the direct/blunt/plain speaking/rude speech that has always been dished out to family. She no longer criticises my hair, my clothing, my life choices - after thirty years of her sticking the knife in at every opportunity I'm still waiting for the jibe but it doesn't come.

Get yourself a notebook and make an escape plan. If you can't go now then it will enable you to work out what you need in place to be able to go. Can you find a short term rental while you get back on your feet, a summer of house sitting/pet sitting? Forget about the dreams you had for this, the happy memories and all the rest. You've moved in with someone, it didn't work out, they are not going to change their ways. If this was the relationship board it would be a universal LTB. If you weren't there then social services would step in, so let them while you piece your new life back together. This is not a living situation that is going to help you heal.

You are very welcome here, yes you're in the right place and I'm sure there are many here that have felt trapped by care and not fit for the sainthood that it seems to need.

Knotaknitter · 20/06/2023 08:40

(I'm really sorry, I can't be concise. I suspect that it's down to not having enough people to talk to in real life)

RuthTopp · 20/06/2023 08:45

Have to read any books on dementia ? Of course everyone's experience of it is different , but I wonder if by reading a few books it will give you an insight on how best to deal with her.
I moved into the home of the relative I was caring for ( non dementia ) and cared for them for a few months before they died. At the time , it was the hardest thing I've ever done , it's relentless , you have my sympathy.
With regard to you aunt's dementia , I have read it's easier to try to live in their world rather than disagree or correct them.
As hard as it is , would life be easier for you if you agree with her on things , i.e she calls you a name , tell her yes I can be , or by reading on this thread , a distraction , she says something nasty , just nod your head , and say , Ooh look at that bird in the garden or completely change the subject and ask a question about something she might engage in.

Lightuptheroom · 20/06/2023 10:01

Ok, social services say they can't speak to us as no power of attorney, so what do we tell them to do now?

Mum5net · 20/06/2023 10:02

@SkeletonGhost So sorry you are going through this. People here will help you with your escape plan. Maybe start a separate thread; many posters will relate to you and have valuable input...
Take every opportunity to leave the room, even better the house, especially in this good weather.
If you are forced to be around her, can she sit in a wheelchair and you can at least be outdoors? DM's care home had about seven spare wheelchairs and begged me to ask friends and neighbours if they needed any for free, so if you don't have one, I'd ring your local care home and ask...

Mum5net · 20/06/2023 11:02

@Lightuptheroom They have a named social worker, don't they? Even if the SW refuse to speak to you specifically on the safeguarding, I'd still continue to send the named social worker emails with my questions and thoughts. When were you last in touch with Age Concern? They might be supportive?

DrBlackbird · 20/06/2023 11:07

Anyone else who has come to sit with her while I've nipped out for an appointment of my own, and the day centre/cafe she goes to once a week - can't speak highly enough of her. She's a delight, funny, happy, singing, joyful, a good laugh, pleasant

No solutions as such @SkeletonGhost , but offering sympathy and recognition. My MiL absolutely could be your aunt’s twin. To everybody else she’s a ‘delight’, but to her family she’s mean, manipulative, spiteful, grasping and jealous. Amazingly so given the extent of her dementia!

It’s not just conflict because she says something wrong and they try to correct her. It’s that she’s got an instinct for making hurtful and undermining comments. Easier for me to ignore because she’s only in law, but I see the hurt felt by her DC who are doing their best for an ungrateful old B.

If she’s driven you to thoughts of hurting yourself, you need to escape. She’s an aunt, not a parent. No obligation to stay. Your parents want (or ought to want) you to be happy. If it’s financial problems, that’s harder but not impossible.

Juneday · 20/06/2023 11:34

@SkeletonGhost this sounds really tough and of course it isn’t fair to blame dementia per se, I know younger people with similar personality traits within my family, where some find them charming and delightful , but others get a very nasty selfish person and her own DM no longer sees her.

I think you are right the filter goes as they get older. Friends DM is very abusive to her husband of over 50 years, and controlling too - as an old fashioned husband who feels loyal but also a little scared.

Others are right, you must get yourself some longer respite, as dementia progresses maybe others will see the other side to her and help and support you. MiL had a bit of another side that rarely showed, but had reduced me to tears on a few occasions pre dementia, but recently she blurted out lots of unfounded criticism to DH and also to me. Thankfully other family agreed she had that side to her and were sympathetic. But it is still hurtful and hard to forget. She told me that I am not a good daughter in law. Despite doing her shopping, her gardening, her washing, taking her out for coffees regularly before Covid and to 90% of hospital appointments and spending about 15 hours in A&E with her in last 12 months. The temptation to answer back!!! I think what she was expecting was me to invite to live with us - she lived with us for three months several years ago - never again …..

You are clearly a caring person, don’t forget that, she is lucky you are there for her.

TheShellBeach · 20/06/2023 13:34

I was also at breaking point before this, in a different way. Either way I feel about to break..

Oh @SkeletonGhost I am so sorry to read this. It sounds like you've been through a very bad time emotionally lately - probably for years?

Believe me, you need to get away from your aunt.

I thought I could cope with mine. I was wrong. She denied me food (told me I was fat anyway, so didn't need food) complained about everything I cooked (and I mean everything), told me never to use the washing machine without her permission because she couldn't afford it (which was complete nonsense), turned the TV over when she realised I was watching something - not because she really wanted to watch the other side, but just to be horrible.

It ground me down, until I collapsed in a sobbing heap in the next-door-neighbour's arms, after an appalling shopping trip with my aunt. She went into the house and he came to help me take the shopping out of the boot.

OMG he was so kind. He'd thought that she was delightful but after comforting me for a few minutes (and I felt so stupid afterwards) he got his wife, and they took me into their house for a cup of tea, and told me I should make plans to leave.

There is no need to be abused, just because you're a carer, and if you've got to the point where you're thinking of suicide (I did, too) you absolutely need to leave.

I realised, once I got away, that I'd been taking large quantities of sleeping tablets, all day long, just to keep myself calm. It was horrendous.

Now, I don't know how you're going to escape from your aunt, but you must. Is there a local church minister you could talk to? I actually found that my aunt's minister was very supportive and helpful to me, not to mention shocked when I told her what had been going on.

venusandmars · 21/06/2023 16:48

Hello, I hope it's OK to join you all.

I've read the first couple of pages and the last couple of pages and I've been alternately nodding along in agreement and feeling awed at what some of you are coping with. I'll go back and read more pages so I can get to 'know' you. I suspect I'll be here quite often...

I'm the DIL. PILs are 92 and 93 and recently moved into a care/nursing home. DH is recently retired and one of 3 siblings. He is actively involved in his parents' lives but I can imagine that if his siblings were posting on mumsnet they'd be saying "we work, our brother is retired, he isn't pulling his weight". I can see both sides.

PILs have been healthy throughout most of their life. MIL has arthritis and hearing loss, FIL has dementia and sight loss. Until last autumn they lived independently although with increasing amounts of family and professional help. MIL became increasingly immobile but could issue instructions and FIL could follow them although that was more difficult as his dementia progressed: "get the milk" (FIL wanders to kitchen and stands..) "it's in the fridge" (FIL looks around) "that's the door labelled fridge" (FIL open fridge and looks blank) "it's the milk you want" Task accomplished Grin

Throughout this period of deteriation all 3 children were working and each of them went for a day visit 1 weekend in 3. DH included. Although I know his siblings sometimes visisted more frequently and sometimes stayed over. PIL lived appox 2 hours away from everyone.

In the late autumn MIL had a couple of falls - one we didn't know about until we found the ambulance report, the other DH was visiting. He became their defacto carer (he was retired by this time). He helped his Mum to dress, wash, took her to the bathroom, pulled down her underwear, and pulled it up again afterwards. The other 2 siblings took over at weekends.

It became evident that PILs 'independent' life was not sustainable. In the end they had 24 live-in care to help with all food, medication, night time toiletting, personal care etc. They also continued to pay for some of thier previous carers - a weekly physio, twice weekly independent carer, cleaner, and a dementia befriender. It all seemed ideal.

MIL can be cantakerous (always has been) and decided that this arrangement wasn't working. She didn't like one of the carers (because of their Essex accent!) and became uncooperative with them. She also expressed a strong desire to have time away from FIL, who's only desire is to sit next to her and hold her hand (sweet but claustrophpobic). She pleaded to go to a nursing care home, couldn't get out of her own home fast enough.

Both PILs are in the same care home and they are in seperate rooms so at least MIL gets a break overnight. FIL is very bewildered, doesn't remember that he has a room there, although he seems content mostly. MIL is awful. I don't know what she imagined it would be like - maybe that her hearing would be miraculously restored, that she would not have to spend any time with FIL, that she would meet a new circle of friends. Instead she has sunk into a depression, hardly eats, won't participate in any activities. It is heartbreaking.

The nusing care home is closer to all of us: 40-60 minutes drive for us, 80 minutes drive for sibling 1, and 5 minutes drive from sibling 2. And therein lies some of the problem. Sibling 1 visits once a week but sibling 2 has been visiting 3/4/5 times a week, sometimes planned sometimes in response to a 'crisis'. The crisises are nothing critical just the normal day-to-day ups and downs of moods where one parent is crying or another one is having a period of delusion. None of this is helped by the fact that S1 and S1 phone every day so are exposed to the vagaries of mood, and S2 feels under pressure to respond.

All 3 siblings are honest in that mostly there is very little joy in visiting.

I know that DH would prefer to visit infrequently. He is accepting of going once per week, usually goes twice a week, and feels under pressure (from his siblings) to go more. He's not exactly copping out. But this is not the retirement he anticipated. He's very outdoorsy and active, wants to see the sun shining and get out on his bike, or go away camping for a few days, to be spontaneous. Then there's holidays. We've already had one long-ish holiday away, DH has a week's cycling event planned, then a climbing trip to Nepal. These are things he can do now, in his younger retirement (and the first trip was my holiday too, with my work arranged to make it possible). But it leaves his siblings carrying the load and I sense their resentment building up.

DH acknowledges that the most important thing during the next years (FIL is physically very fit and could live for a long time) is to maintain a good relationship with his siblings. PILs are safe and very well cared for in a great (and eye-wateringly expensive) place. DH feels that all siblings need to step back to a manageable and sustainable level of visiting. Emotionally that is easier for him than his siblings. I can see it from their perspective, I can see that they are working and that DH has 'more time on his hands'. I feel like I end up nagging him.

The sibling relationships in general are pretty good (although 2 of them are twins which brings its own dynamic) and I'm sure that family bonds and good sense will prevail.

I'm not particularly asking anything here (although any insights / advice would be appreciated). But goodness, it feels good to be able to get all of that off my chest!! Thank you to all those who set up and support these threads Flowers

Knotaknitter · 21/06/2023 19:17

@venusandmars What "load" do they think that they are carrying? Is there some sort of agreement between them that their parents should be having X visits a week? His siblings don't get to decide what your husband does with his time, if he wants to go once a week then he should. If they want to be there every day then that's their choice but that doesn't impact on other people's choices. It cuts both ways, your DH doesn't get to say how often his siblings should be visiting.

As to holidays, I was widowed before retirement and the things we'd put off doing until later are now something that I'd have to do alone. My chance of doing things together has gone. Get out there and live your lives as you want to.

(Disclaimer, I'm an only child)

GordonBennett345 · 21/06/2023 21:23

Your DH should only visit as often as HE wants to. There is no requirement for all siblings to do the same thing. I'd be like your DH and let the care home do their job. Step right back.

venusandmars · 22/06/2023 15:12

Thanks for your responses. It helps to have another perspective.

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