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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:
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TheIoWfairyiscancelled · 16/01/2022 07:49

Morning all! I’m sorry to hear about all the covid palaver so many of you are having to negotiate. I’ve spent the last few days making preparations (organisational and mental) for Dad’s funeral. The current covid rules just add to the complexity and anxiety, without giving us an excuse to limit numbers.
I’m a great fan of podcasts and someone directed me to ‘The Happiness Lab’ which had a couple of recent episodes with Julia Samuel talking about grief - very timely for me, but I now realise it’s the sort of information which I wish I’d had in advance of dad’s deteriorating health and might have helped me through the last couple of years. Anyway, I’m passing on the tip to you lot.
In domestic news, I decided to use up the last of the left-over-from-Christmas parsnips in a sort of Spanish omelette. It wasn’t very nice, I’ll stick to soup in future.

whatever45 · 16/01/2022 09:53

Podcast sounds helpful, will have a look for it. Planning funeral here too as it's this week. We have so much Covid at work that they want me to work from home incase I get it and then can't go to funeral. Really touched that they are being so thoughtful.
Off to look in fridge for possible soup ingredients.

countrygirl99 · 16/01/2022 11:27

whatever that is very thoughtful. I hope everyone' funerals go as they hope and bring comfort.

freshcarnation · 16/01/2022 12:37

Morning all. Been to visit mum this morning and took her some yellow chrysanthemums which are her favourite. She's getting weaker but still eating porridge and drinking milk with honey. Her carer feeds her little mouthfuls during the day. We've had the 'injectables' delivered now from the palliative team but no need yet. Guess it's a waiting game now.

notaflyingmonkey · 16/01/2022 15:40

Even though hospital are keen to discharge DM to a nursing home, they haven't been able to find one #with spaces that can meet her needs. So they are moving her around within the Trust when/where there is a bed.

Doesn't sound like best practise to me. But then we all know the NHS is at breaking point.

In other news, DD has moved out this weekend. I have spent pretty much the whole weekend cleaning to the point of exhaustion, and not really being able to speak to anyone.

I realise that I need to go back on my anti depressants, and think about taking some time off work as I am fast becoming a basket case, and that is not sustainable.

Sorry to hear so many of your parents are moving into end of life. Flowers

thesandwich · 16/01/2022 15:56

Sending 🌺 and good wishes to those of you planning funerals and facing last goodbyes.
And @notaflyingmonkey you are no use to anyone broken and burnt out.
Take some time off. Go back to the anti ds, and put your needs first.

countrygirl99 · 16/01/2022 19:03

Mum has just phoned my youngest brother to tell him dad is in hospital. He's taken her to see him twice in the last few days😔. Then she phoned me to tell me dad 2ss very sleepy today. I've only been back from taking her for an hour.

freshcarnation · 16/01/2022 20:22

Oh @countrygirl99 who's looking after your mum now?

countrygirl99 · 16/01/2022 20:45

My other brother has gone round this evening. Dad was very sleepy and unresponsive today. On the way to visit she was complaining no one's telling her when dad can come home. He never will. In the very unlikely event he pulls through this he will have very high care needs and will definitely need to be in a nursing home. When we got there she was surprised he wasin a side ward. He's been on one since Wednesday😔

freshcarnation · 16/01/2022 22:23

Bloody hell.

NewYearNewMinty · 16/01/2022 23:45

Oh lord, @countrygirl99 you really are going through it Flowers.

@notaflyingmonkey do take some time out to look after yourself.

I'm definitely still at least 50% basketcase even though I'm now 'only' dealing with mum.

Some things are better - the self harm and suicidal ideation are well in the last now, but have been replaced by monumental panic attacks, and my confidence/self esteem are non existent. I can go from positive to panic to negative and back to positive in a few hours and it bewildering.

Cockroach all Wine

Cherrysherbet · 16/01/2022 23:47

May I join you? My 76yr old dm has been in hospital since last July. We share a house, and have always lived together, along with my Dh, two grown up sons and 11yr old dd.

I came home from work to find dm still in bed. She was soaking wet, as she has been incontinent for years. She was very confused and couldn’t stand up, so we called an ambulance. They took her in. Three weeks later, she went to a rehab hospital, and has been there ever since. She had an infection after being in for a few months, and after that they said she now can’t sit in a chair safely. So, she is now bedridden. We have been waiting for her to come home since 2nd November, but there are no home carers available. They want to send her to a care home for the interim, but because she suffers so badly with delirium, I just can’t allow them to do it. I know this is going to be so hard. I will have to give up my job, that I love. I will be housebound for most of the time. My dd will miss out on days out/ holidays etc….. I’m so worried and scared, but dm is so confused and this happened so suddenly. Feel pulled in all directions. Sorry for the long post.

NewYearNewMinty · 16/01/2022 23:53

Cherry welcome and I'm so sorry you're going through this...it sounds horrendous.

Have you checked private carers yourself? Would that be financially viable?

Would your employer consider flexible working or a sabbatical?

I did the latter and subsequently left my job...my world has got very small, very quickly. The financial ramifications are huge and it's a very deep hole to drag yourself out of.

My DD is 17 and I'm struggling with guilt about the amount of responsibility she's had to take on over the last couple of years and the financial impact on her.

If there're other options that could be considered I would try and find another route.

Cherrysherbet · 17/01/2022 00:11

minty thank you for welcoming me. The hospital have said she needs 2 carers, 4 times per day. She needs changing in bed, and hoisting to use the toilet. They will provide that for 6 weeks, then she will be assessed by the council. My dh and I will do everything in between.
My employer is very flexible, and I could work hours to suit, but the hospital says dm needs 24/7 care and supervision. She also shouts out in confusion during the night, so I think my job will have to go.
I’m a very sociable person, and dread not seeing people. I feel so guilty about my dd too.

I’m an only child. My dh is very supportive, and loves dm as I do. We feel like we have to try this, but I’m having major doubts.
I don’t think there will be a good outcome, whichever route we take.
Much guilt lies ahead. Really feeling the responsibility.
I’ve read through this thread, and I feel for everyone who is facing these sorts of decisions. I’m not alone, after all….

Ilady · 17/01/2022 04:31

Cherry sherbet,
I would take Minty advice here as she left work to mind elderly parents.

I would look into care staff or a care home for her as from what you told us her needs are high and complex. Then if she is shouting out at night your going to end up with broken sleep.
If you mind her can you move into her home or would she have to move in with you?
If you leave work your down your income, lack the social aspect of work and long term it will effect your finances and pension. If you have a child she needs you also and as she gets older the expenses of bring her up will just get higher.
I know several people who have taken on this type of care and being honest it very hard. It both physically and mentally exhausting and it very hard to arrange some time off. It puts a lot of strain, stress and possibly money worries on your family.

whatever45 · 17/01/2022 06:14

Hi Cherry, I totally agree with what's been said. Maybe arrange to visit a few care homes just to see? It's a whole new world but finding the right one is possible and my Dad really benefited from the social stimulation and expertise of the staff to meet his needs and keep him comfortable. It was important to me to be a daughter to him not his carer.

PermanentTemporary · 17/01/2022 07:07

Hello Cherry. What a very tough situation. Giving up your job is a huge step to consider and I know the stress of being faced with these sorts of decisions. My mother is nothing like as physically dependent as yours but is in a nursing home as she has challenging behaviour. The staff are amazing with her and although I know she would never have chosen to be there, she is surprising us by how cheerful she seems. 💐 to you.

Onewildandpreciouslife · 17/01/2022 07:30

Welcome @Cherrysherbet. You’re in an impossible position, but please keep an open mind about the care home. Your DM is relatively young at 76, so this could be an arrangement that goes on for 15-20 years.

Is your DM aware of her surroundings? Might she be looked after better by people experienced in providing 24 hour care?

My DM has been in a care home for the last 3 years. She doesn’t like it, so I still feel guilty about it, but when she went home she was miserable there too. Having her at my home was never an option, partly for practical reasons, but I didn’t want to put my children through that. My grandma lived with us for a couple of years (when I was 11 -13) and I didn’t want that for my children

I’m full of admiration for people who do take this on, and it may well be the right decision for your family. It’s wonderful to have a supportive DH!

Good luck Flowers

Knotaknitter · 17/01/2022 08:23

@Cherrysherbet At some point your mum will have care needs that are too much for you to manage. It's not about how much you love her, it's about what is possible in the long term. Carers come in twos and they get to go home at night, put their feet up and then have a good nights sleep. They have legal restrictions on their working week and holidays too. Family get none of this, you do a full day and then you do the night as well, seven days a week. Your mum is still young, can you manage ten or more years of what you are planning?

There's only you that will know when you reach the point of it being more than you can manage but you've got to be realistic about what you can do and the impact it will have on all the family. I know it's easy to say that you managed before and you'll manage again but she's not the person she was and what worked before will probably not work now. You, your husband and your children are entitled to have some quality of life and that is no less important than your mum's quality of life.

My mum took a few months to settle in residential care (dementia and a bad fall) but after that she said that she had reached a stage in her life where she was really happy. It helped that she didn't know where she was and thought she worked there, which for her was good because it made her feel valued. I thought it was a personal failure but I had to admit that they were better at care than me, they could get a doctor through the door at a time when I couldn't get them to answer the phone. They were always doing something (bingo, dancing, cuddling a charming dog, film afternoon) and after years of living along, mum liked having someone to talk to. As time went on and she continued to decline I knew that there was no way I could have managed alone or with carers four times a day but at the start I thought I could have done if I'd tried harder/sacrificed my life/given up sleeping.

Before she moves anywhere you need to find out what exactly is involved and be realistic about what that means for you. What might be possible with carers four times a day goes right out of the window when no carers are available. Whatever you choose you are going to feel bad about it and it is hard being an only child because there's no-one else to share the responsibility. (although I'll say it's easier being in sole charge than trying to involve a sibling who talks a good game but shirks responsibility).

Knotaknitter · 17/01/2022 08:24

I really need an editor, someone to stand there with a red pen and cut out my waffle. I wonder if they'd do my cleaning too if I asked nicely?

countrygirl99 · 17/01/2022 08:48

I second what others have said. If you bring her home you will be on duty 24/7 in a highly stressful role with a bit of help. You will struggle to find the time and energy to spend quality "mother/daughter time". If she is in a home rented and qualified people will be doing the practical work and you will be able to spend your time chatting over a cup of tea etc.

TheIoWfairyiscancelled · 17/01/2022 08:53

Hello @Cherrysherbet. The advice here is golden. Ultimately there is no right answer, you just have to try to do your best for everyone - and that, most importantly, includes you.

notaflyingmonkey · 17/01/2022 09:05

I would suggest you take an objective approach, and draw up a 'pros and cons' list Cherry and see if you can work out why you think doing this yourself is the best option for you, your DM, DH and DD, Vs a professional care environment. You say you can't allow a care home to deal with her delirium, but I'm pretty sure they are used to that.

You would essentially be turning yourself into a full time carer for your DM, which is different to being her daughter. What about the impact that will have on your DH and DD? trust me on this, I have the T-shirt.

Tough choices to make.

NewYearNewMinty · 17/01/2022 09:33

@Cherrysherbet

I've just re-read your post, and this reply I guess is something of an essay. I can't tell you what you should do, but as someone who has only recently been in your shoes and is still dealing with the aftershocks, here is a warts and all account of my experience.

Jan 2019 - dad fell down the stairs and broke his back in 4 places. 7 weeks in hospital/rehab then home in back brace. He was able to shuffle about indoor and manage the stairs, but suffered numerous issues that weren't technically related to the fall but only came about after. The impact on his mental health and confidence was also pretty bad.

Early 2020, his younger brother passed away and he took to his bed. Early April, at the outset of the pandemic, we were advised that he was to be put on the end of life care pathway...they suspected some kind of gastrointestinal cancer and a life expectancy of 1 - 3 months. We decided to keep him at home because of the pandemic and care home risks and restrictions.

It turned out to be 'just' frailty and he survived another 13 months, by the end of which he was blind, doubly incontinent, unable to feed himself and struggling to even drink without support (usually pureed food and thickened liquids), often confused and in pain. He couldn't be lifted without a hoist but found it uncomfortable so opted to stay in bed.

Like you I'm an only child, although my mum is still around she is not a natural nurse and we have a challenging relationship so working together to care for dad was incredibly difficult.

Carers 4x a day will not scratch the surface when you're having to clean up a wet/soiled parent/bed at midnight, or sitting with them for hours at 3 or 4am because they are distressed.

Mealtimes that would normally take 15-20 minutes can take up to an hour, not taking into account any special dietary needs.

He needed lots of movement to prevent bedsores and also because be frequent slipped down in bed and needed propping up, which was physically demanding. Even though he was tiny he was a dead weight and that's not easy to manoeuvre.

You will need space for a hospital bed as well as the hoist and any other equipment your mum needs...the likelihood is that your entire home will be turned upside down.

You will also be running your own home, plus all your mum's admin, appointments, dealing with all the numerous agencies involved with her care, managing her medications. There may be times that she injures herself or needs medical assistance outside of carers hours. I never thought I'd see the day I'd be administering suppositories to my dad, and became quite the expert in dressing wounds caused by him trying (and occasionally succeeding) to throw himself out of bed when he was confused and distressed. We couldn't move him due to his previous back injury and being unable to weight bear so on one occasion when he fell out we had to wait 4.5 hours for paramedics to come out and lift him back into bed.

Also bear in mind that the agencies will always put 'patients voice' first. I'm sure this is well intentioned but I have to say that as a carer I didn't feel mine or my mum's wellbeing was considered at all.

When we thought it was short term, we asked about dad being cathetered or having a daily suppository to try to regulate his bowel movements...against policy because of infection risk (even though he was dying already) or not without his consent, which he really wasn't in a fit state to give, but because he was lucid some of the time right up until the end he couldn't be declared incompetent.

If you haven't already you will need to get medical and financial POA in place as well.

We were given emergency meds to be administered by the end of life team...'just give us a call'. Several times those calls didn't actually result in visits.

There was, and still is, very little face to face support for carers due to the pandemic, so bear that in mind when considering the social and emotional impact caring at home will have.

Agencies such Macmillan and Marie Curie will only support with a formal cancer diagnosis, which we couldn't get even when it was suspected as Dad was too frail for investigative procedures. Our local hospice turned our referrals down 3x on the grounds that dad wasn't in need of significant enough care. Eventually I pushed for him to be transferred to a care home for last 7 weeks of his life as I was so terrified we would be unable to manage his symptoms at home or call anyone else to treat him promptly.

My parents live round the corner so I did get to go home for a break. It didn't prevent me being referred to the CMHT for self-harm and suicidal ideation, or currently being on triple the dose of AD's I was two years ago. I thought I had bad panic attacks prior to this but the ones I've had in the last 6 months have been beyond anything I've experience previously.

And I should add that my dad was the most easy going man and compliant patient you could wish for. We were incredibly close and I loved him to bits.

My daughter was 14 when dad fell. She's 17.5 now and more or less independent. I lost those last few of her relative childhood. I didn't have the bandwidth, energy or time to support her anywhere near as much I would have liked with her GCSEs and college choices. Thankfully we were close beforehand and by the grace of some higher power it hasn't damaged our relationship but it's certainly broken me and she's seen and heard things I would never have wanted her to experience.

My dad was 83 when he died. If your mum lives for another 7 years, you will miss your DDs entire adolescence and they need you now, especially girls I think, probably more than when they small.

I can understand you needing to give it a try. But I would gently but firmly suggest that if you do, you use that six weeks with the carers to consult with organisations such as Carers UK and Age UK, and look into care home options so you can be prepared for the eventuality that home care might just not be the best choice for all of you.

If you want more of a blow by blow account you're very welcome to search under my previous name MintyCedric, for posts on this thread over the last three years.

Tbh without it and my amazing best friend whi had supported me in real life, I think there's a distinct possibly I wouldn't be here posting this now.

thesandwich · 17/01/2022 10:24

@Cherrysherbet sorry you have to join us. But please take heed of the experiences of the battle scarred vets on here.
And community care services are on their knees…… massive staffing issues. Don’t be fobbed off with promises of cavalry who will never come.

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