Cockroach Cafe - Autumn

Based on my experience I’d never say I never want to go into a care home. I mean, I don’t particularly relish the idea but I’ve seen the difference a good one can make to both the resident and their carers. I would instead be specific about the circumstances and very specific about the type of home.

On wills, I’ve tracked down the originals of my parents’* but it’s a right faff getting the solicitor to release them to me. DB and I are joint executors but he’s just gone abroad for another posting until Christmas. Think we’re set now but it’s a reminder to never think anything legal is going to be “simple”.

*It wasn’t hard - mum had been nagging dad for years to get them done but for some reason my very sensible father was superstitious about it. Anyway, she finally got him to agree one December and they gave me a copy of them in an envelope - on Christmas Day nearly 20 years ago with my presents! The memory of that makes me smile now. Mum was so pleased to be able to tick the box and know it was done that she hadn’t considered the timing of telling me. I managed to make light of it and it became a running joke.

DH and I have just been discussing this. Prompted by the challenges I have faced caring for my elderly DPs for the past 2 years (so lucky they have money to spend on live-in care) and the sudden diagnosis of DH's older sister with Alzheimers. She is only in her mid-70s!

It's a really useful list, and I would add to it to be clear about whether or not you want to go into a care home and at what stage ...

@Dormit those carers sound terrible! I wished carers were trained and paid better, it would make such a difference to the sort of people who wanted the job.

I am very grateful that my Dad sorted out all their affairs before he passed away and told us where the folder is with the wills etc. My siblings and I have medical and financial POA for my Mum (at her request) as well which is reassuring.

I have started a file for my own DH/DC with all the passwords and accounts etc. My DH and I have a will but haven't done POA for each other so should probably get on that.

Watching my Mum's decline has made me fearful of old age but it has also made me see that having the paperwork in order helps a lot.

I agree re making wishes clear and everything a straightforward to deal with as possible. A few things I've learned from my experience with my parents are

• Whilst you feel too fit and well to need it, have an ongoing system of how your DC can find clear details of bank accounts/pensions/bills/investments etc all in one place. By the time one parent is unwell no one has the time/inclination to do this.
• When assigning LPA and executor roles etc think through who actually would have the skills and the ability/time to do the job properly. These roles are not some sort of honour to show you care for someone, they are time consuming and complicated.
• Unless your children definitely have a very close relationship and frequently work together happily do not appoint them joint roles. If you are considering appointing them joint roles because you don't want arguments over who should be chosen, this is probably a sign that they definitely should not have a joint appointment. Having a role to do together after you are gone will not bring them together if they are not already close.
• Leave instructions about your funeral wishes, even if (like me) you actually couldn't care less. It will be a comfort for family to be able to say they had done what you wanted, will help minimise disagreements and provides a perfect answer to any interfering extended family members. Include any preferences as to cost- it feels awful to be considering the price of items and there can be a push to ask for the 'best' of everything. Some people might want that but I'd rather have a simple cremation and the £££ that could have been spent on a funeral spent on something fun, or given to the cats home. Or even better have it pre-planned and paid for.

Same. We're still unpicking issues from my mum's estate, and she died 3 years ago. Dad is still alive and they both had wills and POA etc set up.

Despite that, there was no clear instructions or info on what was in place, Dad is no use / can't remember what was agreed and the wills were very basic, but they have a trust set up etc and overseas property, which has been a bloody nightmare to sort out.

Chatting with DH last night as we need to update our wills, but this has also taught me we need to leave instructions / a guide or whatever on leave behind and how to access it, what to know / consider etc. I'm also considering changing our executors as we had family as ours, but some of DH's finances are complex and I don't think its fair to land people with no knowledge and expect them to figure it out.

Good for saying no, @Dormit .

It's a v sad fact that if families show willing to help, SS usually withdraw faster than a greyhound out of a trap. It's such a shame because I'm sure many of us would be very willing to work with SS rather than devolve the job entirely, but we can't let that be known!

Thank you for the new thread. Solidarity to all.
Social Services are getting rid of the useless care agency my mum has had since December. All the good carers left and it’s been a shitshow since May with multiple complaints from me. They don’t even wash their hands, have long false nails, wear inappropriate clothing, turn up nearly 2 hours late, or don’t turn up, and more recently had a big row with my mum one night because mum wasn’t happy that she’d arrived over an hour early and was patronising asking if she wanted to go to bed at 7pm. They’ve told her an appliance is broken and don’t last when they hadn’t even switched it on. The lack of any common sense is shocking. Due to several carers being so bad they are not allowed back the rota has been left looking like Swiss cheese and the manager expecting me to fill the gaps. Erm, no.
Needless to say I’ve been very stressed the last few weeks and really need a day to myself. I’ve not had one yet since my youngest started high school and I really need one.

My experience with DM has made me realise I have a duty to DCs & DH to make sure that they are clear on what my wishes are for my later years. Also to make sure things are straightforward for them to deal with.

I'm retiring in a couple of years so I am making plans to ensure I dont need to spend my retirement juggling my modest pension investments as DM had to do. This meant she depended more and more on DB to sort things for her. This in turn meant that he could be quite controlling about how she spent her money.

@GnomeDePlume 💐 totally understand. I am fresh off a call to one of the specialist nurses dealing with my DF. New baseline after yet another illness he cannot and will not bounce back from.. Just fading and fading. As the nurse said ‘he will likely not die from his Parkinson’s disease it’ll be something minor he just cannot deal with. I am not religious but I do pray in my own way he goes to bed and peacefully slips away. It is horrible to see. By goodness the nurses and carers are brilliant. Best wishes to you.

I'm a long way down the track now. Any grief has definitely been in reverse. There have been too many times where DB and I have thought 'this is it, she cant recover from this'. Except she has but the recovery has been less of 'her'.

There is nothing of DM left.

DM and I werent close before this started now I just dont care very much. I would not see her suffer but only in the sense that I wouldnt stand by and watch any human suffer.

Realising I have got to this point has given me some peace. Even DB's nonsense doesnt affect me as much.

I am so relieved to have found this thread. My DM had cognitive impairment and other health issues from around late-60s/early 70s, then had a stroke 3 years ago (she’s now 78), which left her very frail and with brain injury, plus now dementia (an interesting mixture).

She is in a (wonderful) nursing home near me, and I have very little to complain about now we aren’t trying to manage everything for her from home which was so stressful. It means my sister and I can actually have a (semblance of) a relationship with her again, but I am struck by how much I am relating to all of your posts.

The description of advance grief, the feeling that visits can be just “internally logging the decline” (that phrase hit hard), the huge effort involved in trips out, and so on. It’s somehow always on my mind. It’s like at the same time I adore her and my heart breaks for how much we have already lost, wanting to make the most of the time left, whilst also somehow (horrifically) wishing she wasn’t in this half a life position, and my stomach churning when I remember I need to visit (which I do twice per week, which feels too little). All very hard to process alongside midlife, teenagers etc.

Thank you all very much for sharing and hugs to each of you.

@bigdogpaws I recognise that spiralling of emotion.

Something I also noticed was how DM's mood could switch on a sixpence. Perfectly happy one minute then something would unsettle her, perhaps just a shadow, and she would be insisting she had to 'go home', furious, fighting.

Thankfully now, even if she does have a switch of mood, the worst she can do his slide her legs off her bed onto the crash mats.

@Podgedodge you may find that you can’t book patient transport until you know the date needed, which makes sense, but also risks missing the window when transport is available before slots fill up. If that happens, I would suggest biting the bullet and hiring a car. It won’t be as bad as you think, you can ask for something small if you want, and at least you will be in control of your own timings etc. Besides patient transport, it’s the best of all the other options.

@Podgedodge I second looking for at patient transport, or see if there is any community transport schemes which may help. My DM is also 100s of miles away and organised lifts, taxis and someone to stay overnight at short notice is my new expertise. Thankfully where DM is in Ireland she has a great geriatric community nursing team who'll step in and offer help when they can.
And snap to BlackAmericano. I can't tell my mother any health related information anymore as she gets very distressed. And keeps trying to get pizza delivered to me. Its a werid response from a woman who hated all forms of non home cooked food all her life.

@BlackAmericanoNoSugar I think it's very healthy to 'miss' the odd phonecall!

@BlackAmericanoNoSugar I think with parents who have dementia, when you are confident they will be safe, you have to give yourself permission not to answer every call and not feel guilty. I know from seeing her call other people that my DM will make a call about the smallest thing that comes in to her mind but forget all about it if there's no answer, whereas sometimes if she does get someone to discuss it with her than small passing thought becomes a Big Thing. I've learned that I should only answer if I have time to just chat (because trying to hurry her stresses her) and distract if she starts to complain about things we can't control or seems to be building something up in to a big deal. In many ways it seems to go against what I would have thought I should do- especially distracting her when she wants to talk about real concerns that have no solution. But I've realised that she is increasingly only really living in the moment so giving her time to voice her worries just means time spent worrying, whereas shifting the conversation to something that makes her happy means that in that moment she feels better. I've also found that it's unwise to share anything but the blandest news (even good news like the DC passing exams/starting a new course etc) with Mum as anything that might signal a change or the slightest risk sends her off in a spiral. Like your DM, mine would previously would have been calm and collected, and enjoyed talking about new opportunities. I do wonder if part of this is her somehow thinking she needs to be involved in any changes in the family (good or bad) or take some responsibility and being worried that she doesn't know what or how. A few times she has told me that she's worried and 'busy' with something she needs to do because eg. someone she knows is moving house- and I'm sure all that has happened is that they have mentioned it in passing. She was always someone who like to involve herself (to be polite about it!) so I think perhaps her mind still thinks she is 'helping' everyone.

@Exhaustedpickle My sympathies, it can be exhausting. I recently didn't answer a phone call from my DM. It's probably the first time in my life that I chose to not answer. I knew that she was phoning to complain, I knew what she was going to be complaining about and also that there wasn't anything that I could do to solve it for her. I felt guilty but also intensely relieved. Her memory is really bad so I phoned her the next day and told her that I had 'missed' a call and she couldn't remember why she had phoned.

When my DB had to have emergency surgery she phoned me every 45 minutes or so to have exactly the same conversation over and over again. DB and I have now agreed not to let her know, if possible, if we are seriously ill in future because she absolutely spirals. Before she started showing signs of dementia she was always very calm about these things so it took us a bit by surprise.

Thanks @bigdogpaws I know the CC patrons get it and unfortunately are going through similar. My DM's wants are absolutely eclipsing everything and that's after I put some boundaries in around visits.

Your Alexa story has put me off for life!!

@Podgedodge you should be able to organise patient transport, which is free. I have done it for my DM and it takes all the anxiety out of wondering where to go and how to park etc. It does need to be booked in advance though so give them a call as soon as you have a date. Good luck!

Thank you @TheBroonOneAndTheWhiteOne .
That sounds like a positive and practical thing I can do.
I’ll contact them now.

@Podgedodge I live in a rural area and all hospital appts here are many miles away. Most are 100 miles away.

There are transport volunteers who can take patients to these appointments. I'd ring the hospital transport department and ask them if there's a similar set up in your MIL's area - or if she's actually entitled to hospital transport.

Well…another worry to add to my list. Have namechanged, but have MIL who is late 80s and lives 400 miles away. There is no one else. She needs an operation (entirely caused by her own stubbornness in believing what she was warned would happen wouldn’t happen to her and it’s happened).
She is having a preop assessment in about 3 weeks which is fine, I have the date and can get there and take her to the hospital. The letter then states the operation will give 21 days notice (which I can work with) but may be in local hospital, fine, or county hospital, 35 miles away. I know I am troubling trouble, but cannot really work out what to do if this is the case. I fly or get the train to see her because it’s an 8 hour drive, and my wee car and me are just not up to it, so I do not have a car while there. I take her in a taxi to local hospital, but I’m not sure that is practical for a 35 mile trip. I don’t know, maybe it is the only solution.
I don’t want to hire a car because she lives on a ridiculously busy road with no parking and I’ve never hired a car before and it makes me nervous to think about scratching it etc and I will be nervy enough all ready.
Bus travel is absolutely out for her.
I am going to have to listen to her for the next three weeks (she phones me every day) telling me they should have given her a hysterectomy rather than a pessary last year and she doesn’t know why they didn’t. She does not listen, or believe any reasons why they didn’t I give and now is just saying, I know it annoys you when I say this, but blah blah blah, the same thing every time.
Also one random person told her nothing would happen if the pessary was left in, so she doesn’t not believe the consultant, the nurses or me that it will not be good for her to leave it, particularly as she needs an op to remove it because her insides have started to grow over it (sorry tmi)
Im trying to be kind to her and try to put her mind at rest, but she is such a negative person and always decides on the worst possible outcome and refuses to be comforted. She has always been like this since I’ve known her, losing my DH, her Husband and my BIL within 4 years of each other has not helped, understandably.
Sorry for essay, but just saying it all does help.
Would wise cockroaches just suggest getting a taxi and sod the cost?( I am aware, I am now looking at worst case scenario, just like her, but I hope with an aim of solving an issue, not just throwing my hand up in the air. She is already saying she’ll cancel it if it’s at county hospital…

@Exhaustedpickle sending sympathy. I think we all understand the feeling that it's not that you don't care and want to help, but you have to be able to distance yourself a little to avoid the elderly parents 'wants' eclipsing everyone else's 'needs'.

@Eclipsing It's very frustrating when siblings aren't on the same page. I have sort of the reverse issue with DM's phone. She is finding it increasingly difficult to use any phone. Brother and his partner refuse to accept that this is a dementia issue (she also has poor vision so they focus on that) and keep trying to get her to use new devices with bigger keys/clearer screens/voice activation etc. All it's doing is completely confusing her as the reality is she just can't process how to do any of this and trying to learn a new method is even worse.
A word of warning if you do persuade your Mum to use Alexa to make calls. When Mum's vision first became a problem and before we realised that there was also a cognitive issue, I set up Alexa for her in her kitchen and bedroom and set it so she could 'drop in' to mine. The idea was that if she had a problem and couldn't find her phone (a common issue) or couldn't get to the landline she could just shout to alexa and get through to my house. Since I work from home there's usually someone around. It was fine at first and she'd only 'drop in' when she really needed to- usually to say she couldn't see her phone and could I call it so she could hear it. Eventually though she started 'dropping in' all the time, especially if I didn't answer my phone. Not ideal when I have work video calls etc- a real sign for me that there was something going on with her brain was when my usually fairly prim DM dropped in 'for a chat' when I was in the middle of a meeting and swore at everyone because I told her I couldn't chat right now.

Thank you @Eclipsing and @ElderlyDilemmas it's nice to talk to people who get it without judging.

I'm sorry @Eclipsing that your very sensible ideas have been ignored, especially when they would make life easier for everyone. My Mum mentioned wanting an Alexa and I was all for it until I realised that it's most common request will be "call Pickle" 😮

@ElderlyDilemmas sorry you've been through this too. I feel guilty for feeling the way I do but I think it's compassion fatigue or something like it. Like your Mum, mine has really bad anxiety and I do sympathise but I can't just take that load from her and absorb it myself. My DH is undergoing cancer treatment at the moment and I want to be able to focus more on that instead of having to be my DM's emotional crutch.

@rookiemere you're right, it is so much more that that. A week without the phone sounds like bliss! It sounds like you really needed that time away.

I thought that DM moving into a care home would reduce the number of calls and 'emergencies' but while my DSis and I no longer get calls about needing to urgently replace a lightbulb, the emotional stuff hasn't dropped off at all.