Drained with the expectation and terrified of what is to come

[Frazzledmummy123]

I'm an only child. Parents, DM is 83 and DF is 87. Both parents still living independently, for now anyway. DM is DF's carer. DF has lost almost all mobility but only uses a walking stick out of vanity/stubborness, and has some cognitive decline which has not been addressed. He has needed a walking frame minimum for past 5 years, but DM refuses (she is the boss). DM starting to slowly go downhill. Very forgetful, potentially carer's stress?, dropping a lot of weight. She passed a recent health check.

Their house isn't suitable (see a previous thread for details) as inaccessible however have at least accepted a few small adaptations. An extra handrail on stairs and outside, bath seat, etc were supplied. No downstairs loo, or anywhere one can be put in. House is between steep hills and nowhere near shops or public transport. My mum who has been very mobile now says the uphill walk to the local shops is getting too much as are the hills on the street. Gardeners let her down a lot and won't pay much for good gardners, and as a result, can't cope with the garden. I don't drive because of anxiety and she constantly guilt trips me about this. There has been no forward planning on their part and the plan was clearly to put it all on to me.

I am like her therapist about all her and my dad's medical ailments. Every time I see them there is something new going on, or another test result needing followed up, and a new worry. My anxiety is off the chart, (I feel guilty for as I know many of you have it much worse).

I have 3 children about to stop for summer break (I'm in Scotland) and now, my mum wants me, DH and the kids to go on holiday with her during the holidays and my dad (clearly so I can help care for my dad). She landed this on me with a fortnight to go before school stopped. I have a family holiday for 2 weeks booked and there has already been guilt tripping comments. How she hasnt had a holiday for years, etc. This is partly because they chose to not go away rather than have my dad using better walking aids.

I know some of you will probably think I am being selfish, but I am just fed up of the fall out of their stubborness all being put onto me. I know things are only going to get worse, and the constrant stress, worry and anxiety is overwhelming. I know this is catastrophising, but if my mum was to pass away or become unable, my dad would need 24/7 care and I am scared of the future.

They had a social work assessment done about 8 months ago, which is where the hand rails came from. They won't accept carers in, so they clearly plan to struggle on with me on standby to pick up the pieces. I feel so overwhelmed and scared.

Hi Op my elderly dad is in Scotland and I think carers coming in is free there? maybe this will help.

You might need to stand back so they have to accept the carers. Not easy.

Yes, we have free personal care in Scotland. This doesn't necessarily provide much though. The carers are great but are not given long with each patient and a visit can be as little as a 5 minute to give medication. Additional care is often purchased privately.

Are you claiming attendance allowance for both of them?
That would pay for the gardener. Then use some for cleaning, handy person etc etc

I just told mine that the government had given them this money and it had to be used for help.

Difficult conversations to be had. Sometimes reality is too much. There will bea big problem soon so all you can do is wait. Continue with your plans with the kids. Book other 2 into a good full service hotel for a weekend, see how they go.

Actually @JDob that's a great idea, had a quick google and there are a few fully escorted tours for those with reduced mobility like this one www.limitlesstravel.org/elderly-senior-holidays.
OP your DM may not accept it, but offering solutions that are not yourself means at least you have a handy response if she asks again.

@TudorFrameHouse honestly great advice however in my situation parents point blank wanted outside help. I secured Attendance Allowance and they ‘ put in in the bank’. Even though I explained it was for help. ‘We don't need that’. Yes you do. Ignore ignore ignore. But @BlueLegume we want you on speed dial. I am actually abit broken today as I literally have no idea how to move forward. Sorry to derail things I am just desperate.

I think that limitless travel company looks great. I'm going to suggest it to my DP.

I know the feeling about parents wanting you on speed dial. I've found that emphasising that I cannot speak to them when I'm working unless it is an emergency does help. Also, I try to carve out time for my family and do just say no to them sometimes and tell them I'm prioritising someone else in the family. For a long time I always prioritised my parents and I think they started to expect it and took it for granted. Now they know they do not always come first.

Would they have someone to regularly drive them to the shops a couple of times a week o? Seeing as your mum is finding shopping it difficult ? It could actually be a carer but you could call them a ‘driver’ and then maybe the carer could bit by bit start helping out / keeping on eye on things etc.

You are not selfish. I’m over three years into supporting DM with incurable cancer and to be very honest there are times when it can’t all be over quickly enough for both of us.

I feel like my has been put on hold for her, but she won’t even help herself by using a zimmer around the house (so she falls) and when challenged just tells me she wants to die. I’ve had enough and don’t even feel guilt any longer as I’ve become sort of numb to it all.

Im not an only child by sibling lives hours away and basically doesn’t give a shiny shit, DF is dead, so it’s all on me - but I’m a single parent (cheating ex-husband) and it’s far too much for me to cope with. It’s been approx 300 medical appointments over the past 3.5 years, which has had a massive impact on my work - resigned before I was sacked. But I refuse to become a full time carer for DM, I’d rather put my head in the oven to be honest - our always fabulous relationship is now in tatters and nothing I do is ever enough. Spending half a day with her leaves me feeling emotionally battered and I can’t wait to leave - it’s horrible to see the state of her and it’s horrible what I’ve become. I could never have managed two DP like this at the same time!

You seriously need to save yourself and put your DC first. Boundaries all the way! Years ago I would never have refused DM anything, but these days it’s “No mom”,
”There’s no way can do that mom”, “You’ll have to get a tradesman in mom” etc, etc, to infinity.

A GP told me that DM was a sinking ship and that I couldn’t prevent the sinking regardless of how furiously I bailed water. The only thing I could do was decide if I was going to allow to go down with the ship or if I was going to save myself. The choice is that stark, because your own physical and mental health can be ruined by trying to care for them, and your own DC and relationship neglected.

Gosh I am so sorry that sounds really hard. Very shoddy of your sibling to leave you (and your mum )to cope alone too. Sending best wishes.

So I think holiday is easy....
"Sorry mum, it's been booked for ages and there's no chance of us being able to extend the booking to include extras. We can do something together another time"

But the bigger problem is that they are not accepting of their current situation/needs, which seems v common unfortunately. My DP mum is the same. Absolutely miserable and not coping but refuses to do anything positive to address it, just calls all the kids every day about stuff that they can't either fix because they are at work or that are non issues.

You can't fix them or help them if they don't want to take the necessary steps. Getting a walked, getting carer support rtc. So you need to find the way to keep repeating this to them
" mum I work and I've got the kids, I can't help you I'm afraid, have you considered getting a cleaner/carer/mobility aid etc"
"Mum, I'm sorry I can't discuss latest problem with you right now because I've got a lot going on and my anxiety is through the roof as it is. Let's talk another day"

You've got to focus on your kids and yourself OP.

@Andwegoroundagain I absolutely agree with your suggested approach. That was our approach when our DF clearly wasn’t returning to the family home and DM clearly wasn’t coping. We got a cleaner, she refused to let her in. We secured and local gardener, she refused to let them in. Family members with skills in trades such as joinery etc, happy to do little jobs for her she was incredibly rude and critical of them. Counselling was secured so she could talk through things with a clinical professional. She cancelled tha appointment. A private referral to a specialist consultant for the care of older people, offered her all sorts of engagement with his specialist clinic. She refused. She has always been an incredibly difficult person but I have begun to wonder is she has some sort of obedience defiance disorder as every time a ‘problem’ is solved she finds another barrier to put up. For example she cannot choose food herself to eat. She is ok with basics bread milk fruit etc but not meal type things. We have taken to supplying her with ready meals. Then she tells me and my sister that she has run out days ago. We solve it by choosing some really nice freezable and microwaveable ready meals. A good few weeks worth. Now she says she doesn’t think she can manage them, even with the clear instruction left. We ask what she wants and she quite brazenly suggested we go round and cook for her nightly.

@BlueLegume why do they refuse all the help!? Baffling isn't it. My DP parents were the same, carers were arranged by his Dsis and then the carers were sent away by the parents. Cleaner etc all the same.
But daily moans about the garden being out of control but gardener out of the question. Sigh.
I really hope I won't be the same !

@Andwegoroundagain baffling is a word I use so much these days. In fact my new phrase is beyond baffling. My husband is incredibly patient but worried about me as he can see I am trying to help but am achieving nothing other than a whole new raft of problems. My conscience prevents me from stepping right away but the toll on my health is awful. Not helped by the fact my husband and I have gradually been spending our retirement at our second home overseas. This is now becoming something I don't feel comfortable doing but as yet haven’t brought it up with husband as far as he is concerned we are due to head back in about 6 weeks and planned to be there until Christmas. So I now feel like I am lying to him about being excited about going back. Sometimes, knowing my DM and tactics she has used in the past, I think she’d rather like having to say ‘oh it’s terrible @BlueLegume has had to stay here and look after me instead of being away’. Yes DM it is terrible because you will not accept you need proper help and expect me to do everything. She has alienated everyone and now it seems like it is my go. Sorry for the rant.

I remember your previous threads.
It's a stressful time, no getting away from that.
All you can really do is decide what your limits are and stick to them.
Taking your aged parents with you on holiday will be no holiday for you or your kids. Say no.
Listen to your DM, sympathise that she's disappointed but say you have to prioritise your children.
DH's parents refused help and concealed illness from us. DH was very stressed but I pointed out his parents were entitled to these choices but it meant there would be consequences. Unfortunately I was right and PIL was gravely ill with DH summoned by the hospital the night before he died. MIL was unable to be looked after at home and lived in a care home from that point onwards - something PIL had tried to avoid.
These things will play out.
Look after yourself and your children - you are not responsible for your parents choices and can but pick up the pieces afterwards.

300ish appointments in 3.5 years is bonkers and losing your job over it is also bonkers. Were the appointments all for the cancer? I hope you have been able to get a new job, otherwise your own retirement is at risk?

I would be getting powers of attorney in place. There always comes a point where they need to relinquish control but don’t want to so it is best to be prepared. Many elderly are like this, do not want to accept the reality of their situation or plan ahead or confront their own mortality. It’s called digging your head in the sand.

@Araminta1003 LPAs are all in place and have been for some time. Our DM is utterly resistant to any help except from us.

You are not selfish at all op. We are all very much in the generation of having to care for young kids and older parents, and they will need to accept that caring for kids comes first. Also we are a generation of more social mobility so often live further away.

My DH’s grandad is a carer for his wife in a wheelchair and they recently went on a cruise. Maybe suggest that for their own holiday. I do believe insurance was high though

My mum is so far ok but i live a few hours away, i work and i have 2 young children, so not sure what i would realistically be able to help with if anything happened. I certainly didn’t have my kids so they would look after me in old age.

Yup, it is crazy and mostly for the
cancers which are mets from primary womb cancer years ago. So it’s been four different hospitals in the county for things including massive (life prolonging) orthopaedic surgery twice, follow ups, physio at the orth hospital, abdominal surgeries to remove tumours with plastics involvement because lots of skin lost and follow ups every week for many months, chemo daily/weekly/now twice monthly, radiotherapy daily for periods and now ongoing treatments to deal with after effects of damage caused by radio (essentially her bladder is fried so she’s incontinent).

She’s had physio and therapies etc at three of the hospitals and is currently back at A and E now because she’s fallen again, didn’t use her zimmer which she knows she can’t walk without. So I imagine she’ll come out with another schedule of physio to be attended.

There were periods where she had 3/4/5 appointments each week and due to the length of time they took up (3-5 hours each with travel time and hauling her in and out of the wheelchair etc) I was lucky to have hung onto the job as long as I did, only because it was flexible and mostly WFH. These days she has 3 or 4 regular appointments each month, so finding another job that’s flexible enough to cover these is very difficult. On the bright side, I’m less stressed now I haven’t got to juggle work as well. I know there’s hospital transport to appointments but she’s been let down by it so many times and missed appointments which are then terribly awkward to rebook - you can’t just have another appointment a month or two later with some of the treatments, it has to be on schedule.

Anyhow, it wont be forever - but at this point I’m beginning to suspect she’ll outlive me!

Thank you. Sibling is a toxic person, who I suspect has some type of personality disorder, so to be honest it’s better if he stays out of my way. I don’t speak to him and after he assaulted DM shortly after DF’s sudden death - he pushed her over because he couldn’t cope with her grief and anger - he’s much safer out of punching range.

And of c0urse LPA only work when the person has lost capacity so it's not that helpful really.
I feel your pain!

No, you don’t have to wait until someone loses capacity to use a LPA, if the person who you hold it for agrees then you can act on it on their behalf at any time, info here;

A property and financial affairs LPA must be registered before it can be used. However, you don't have to wait until someone loses their mental capacity before using it. A property and financial affairs LPA will come into effect as soon as it is registered. This means that the attorney will be able to start making decisions about your property and financial affairs straight away, even if you are still capable of making your own decisions. If you don't want the attorney to be able to make decisions about your affairs straight away, you should make sure that the LPA says this.

https://www.citizensadvice.org.uk/family/looking-after-people/managing-affairs-for-someone-else/#:~:text=A%20property%20and%20financial%20affairs%20LPA%20must%20be%20registered%20before,soon%20as%20it%20is%20registered.

I think that was very perceptive of the GP to say that. Sometimes it can help when these things are said by professionals.