Struggling to cope with personality changes and parental dynamic

[rookiemere]

Apologies in advance if this is long but I want to give as much detail as I can.

DPs are very elderly- DF92 and DM87. I am an only DC and live an hour away. Until 10 months ago they were doing “ok”. We would visit fortnightly and do things like change light bulbs and I would do a bit of light cleaning. DM has full attendance allowance because of macular degeneration and osteoporosis. DF has diabetes, crohns disease and memory loss. They steadfastly refused to get much in the way of adaptations such as walk in shower or a much needed cleaner.

10 months ago DM had a fall and has been more or less bedridden since. Her speech has become very poor - it was getting worse previously and I assume she has had a number of mini strokes. As we are in Scotland she gets free home carers 4 times a day. She uses a catheter now. I took her to the neurologist twice and he assumes she has some form of dementia. She is still fairly cognisant in lots of ways but now gets fixated over tiny things and has mostly lost her previously kindly personality and is very demanding and exacting about all the paperwork and things round the house she expects me to do.

DF is losing his memory but is absolutely adamant he wants to stay at home. Thankfully no longer driving so has a list of places he wants to go to when we come up. Not sure on his capacity to carry out daily tasks if DM or carers weren’t there to remind him. He has a district nurse giving him his insulin each day because he was forgetting to take it.

They shout at each other a lot now because DF struggles to understand DM and DF is effectively her carer. I have spoken to social services and the carers are meant to prepare the meals not DF but he won’t let them. I managed to persuade them to get a cleaner once a week so the house is not dreadful although neither she nor the carers appear to be on top of the out of date food in the fridge.

They have absolutely pots of money but fiercely resistant to spending it on care, although personally generous with us. I think they would be better off getting rid of the council carers and paying for longer sessions with a more consistent level of personnel or indeed a live in carer, but they won’t hear of it.

Anyway so far, so standard and I am a frequent visitor to the cockroach cafe where there are people dealing with much harder situations than me.

The issue is I have been having panic attacks around the visits. They need to be visited at least weekly to keep on top of things like paperwork and the fridge.DH has been amazing and has started doing most of them, but obviously I can’t abandon my DPs and DM likes to save up all her paperwork for when I come and then thrust it at me along with everything else that she wants done. There are no other friends or relatives who can help in any way. Yesterday I had just escaped but for various reasons DS had come up too and left the car I was returning with an oil light warning. Nothing terrible but I just have no emotional reserves at all and I absolutely lost it in the car to the point I frightened myself.

I have been to the GP and they gave me a choice of HRT or antidepressants. I went for the HRT as this is entirely situational. Basically I feel traumatised every time I see them - they decline slightly, DM is less like my actual DM, DM and DF shout more aggressively at each other and expect me to referee, I worry that they should be in a care home but won’t go - I just really struggle with it. I thought by now some sort of definitive crisis would have happened to force the issue, but no on they go. I feel like a horrible person for not coping with seeing them and wanting things to get worse.

I guess my question is what can I do about it? DH is adamant he will do most of the visits- he is worried about me and dare I say it a bit annoyed by my ongoing emotional distress. But as I say I can’t not go, they were ok DPs, DM especially but she is the one I find hardest now I think.

I’m so sorry that things have got so bad.

in my opinion, you need to step right back and take a good long time to look after yourself. Your DH is an angel, btw!

i also think it needs to be made explicitly and unambiguously clear to your parents that this situation is unsustainable and is making you ill. You could write a letter telling them how much you love and respect them but their failure to take account of the impact of aging and ill health is no good for any of you. Then let your DH keep reinforcing that message and emphasising the need for urgent change.

i really feel for you. You need to take care of yourself. I’ve been reading your posts for a while now.

if you feel you’d benefit from a change of scene, I have a wee flat in Largs where you could stay for a break. It’s not a rental, it’s my wee bolthole! Send me a message if that appeals to you.

@Seeingadistance that is so kind of you, I have tears in my eyes.
Outside of my DPs life is or should be good. DH and I actually were on holiday last week, it was lovely and a nice break only punctuated by a few non urgent telephone calls and of course the worry beforehand that something might happen to stop us going away.

In all other respects we are terribly fortunate and DHs stepping up has made me appreciate his good qualities even more.

Neither DP would have the capacity to understand such a letter any more. In their right minds DM would be horrified at the impact of this on me, DF perhaps less so as he has always been pretty selfish. I can’t force them into a care home and I can’t really see them any less than I do currently. DF is waiting on a memory clinic assessment and I hope that will point to dementia and make him accept his memory issues.

DH feels - and I tend to agree with him - that getting more people in their house would make things more complicated and cause additional admin for me.

I also feel guilty as people are dealing with much, much more than me.

I’m glad you got a holiday and one with minimal disruption. Don’t underestimate what you are doing, and the impact on you. My situation is easier because DF is in a nursing home - miserable existence with extremely advanced Alzheimer’s, and after a long complicated process my DM moved to a flat from their big rural home. She’s now unable to drive after a stroke which affected her eyesight and now has heart problems. Her biggest issue though is her denial of reality!

I do find that it’s just constantly on my mind, even when not visiting or in contact with them, and that mental and emotional load is a hard one to carry, and seems just as hard to put down.

You are not a horrible person and what other people are dealing (or not dealing) with is irrelevant. This is extremely difficult and it's making you ill. You'll be no help to anyone if you have a health crisis as a result of this. You can and should look after yourself first.

@thedevilinablackdress the issue is I know what would make me feel better is to have no contact with them, or for them both to move into a care home so I could visit as their DD rather than administrator, referee, problem solver etc. I can’t make either of those things happen and this situation appears to be going on for much longer than I imagined it would in this state.
Minimising visits is good, but as I say DM is waiting for me and saving things up so each visit is particularly awful.

OP, what sort of paperwork is she asking you to do? Can you get Power of Attorney so you can sort any admin out online. Surely they can't have that much in the way of admin?

You can refuse to do this, you know. Is it genuinely paperwork that needs doing? What actually is it? Are they one of those couples who won't have direct debits set up so there are bills coming in that need paying?

I think you should give yourself a few weeks off from going at all. Your DH has offered -let him go instead and see if they behave the same way and make the same demands.I suspect they won't.

I’ve been through this with my mother as she had dementia for ten years (she died a year ago). I was however able to organise care for her as I had LPA, and things improved when I moved her to a care home as I knew she was safe. I hated all the decision making and financial organisation, but I’m an only child and there was no one else to do it.

I’m sorry to tell you that it is unlikely a diagnosis will make any difference to your father. People with dementia tend either deny or forget the diagnosis. They will probably continue to muddle on at home, and there will at some point be a crisis like a fall or illness which may result in a care home placement.

They are very elderly, they are very unwell, they have carers, they are not prepared to pay for more. It’s too late to get LPA, they don’t have the capacity to grant it. You have support from your husband who sounds like a real gem. I hated all the paperwork and admin too, what sort of paperwork are you dealing with for your mum?

Thankfully I do have POA both financial and health.

I have set the majority of their bills up on the app so I can check their finances and sort things out, that’s not an issue. For their myriad of savings prod, I set up POA before they became really befuddled so what I need to do is go back to all of them and ask for any correspondence to come directly to me, to avoid any unnecessary discussions about them.

Its ridiculous things like she gets a large print out of their current account statement and she insists on going through it line by line to spot anything she doesn’t recognise- one time we had a 10 minute discussion about a £2.50 charity donation that we think DF made. They have five figures in their current account. We put their shopping and our petrol for coming up on their card, so there is an inquisition about every line of that. As I said they used to be financially generous so I think it’s more a form of control rather than anything else.

Small jobs seem to take forever as she insists on them being done exactly how she wants them to be, which is difficult for her to communicate so she writes things down slowly.

If I try to reassure her - obviously I keep an eye on their current account for anything genuinely unusual- she would just get angry so it takes less time to just try to play along and reassure her.

The thing that tipped me over the edge on the last visit was she had been trying to get DH to make a hearing appointment for DF. There is nothing wrong with DFs hearing except he cannot understand DM whose speech is now very poor. He doesn’t have the patience or cognitive functioning to work it out and she doesn’t realise how bad her speech really is. DH phoned the department, but they said he had refused an appointment before so they didn’t want to schedule one unless he was prepared to go and DF said he wouldn’t wear hearing aids even if given them ( due to his memory he would lose them in a day anyway so completely pointless). DM brought this up with me twice and I said I couldn’t force DF to go to an appointment ( plus there are a myriad of more pressing medical issues that could actually do with some input) in the end I got angry about it. I thought I had made my point, but she badgered DH about it when he popped in afterwards. Every medical appointment involves us taking them and in DMs case organising an ambulance so we’re keen to avoid non essential ones.

They do ask quite a lot of DH, but differently.They say thank you to him and he is not emotionally involved so doesn’t get upset by it.

I won’t visit for a bit. Yesterday surprised me as I thought I was getting a bit better at coping with it.

You don't need to contact every organisation, just complete a redirection form at the post office so all correspondence is automatically redirected to you. If something arrives that you want them to see, take it over when you go.

Annoying repetitive conversations with people with dementia are par for the course unfortunately.

But as you have POA you can make the decisions about what care they have, and you have access to their funds to pay for it. You don't need your father to agree. I didn't even ask my mother, I went ahead and organised it. The advantage of POA is that you don't have to watch them muddle along, you can step in and change what needs changing.

@catofglory I know a dementia diagnosis may not change things but DF has said previously that if a doctor told him he needed to go into a care home, he would. A dementia diagnosis would help with that.
A large part of the issue is that between the two of them they are just about functioning as one unit. DM tells me she has to remind him to go to the toilet, so if he was on his own I suspect it would become obvious quickly that he couldn’t cope. I don’t want to force him into a home until he’s ready, if it was just him or indeed just her it would be easier I think to get appropriate care in.

@catofglory that’s a great idea on the post redirection, thank you.

If I organised additional care they would refuse it and at the minute at least social
care are involved.

At the moment I believe they would both be deemed to have capacity so there’s a limit to what I can force on them.

Just want to send you a ton of empathy @rookiemere as it really is awful when they change so much and they can no longer even comprehend the demands they are placing and the toll it takes so they can have everything as they wish, or even that you have needs of your own at all. Hopefully getting the post redirected might reduce the saving things up. I'm glad your DH can help, and yes it is different due to less emotional investment for them. 💐

Start looking for care homes before the need arises, although it sounds like that may be needed sooner rather than later. If your mother is bedridden, she should be hoisted when moved. Do you think your father may benefit from a respite break? This would probably force the issue of residential care, as he's probably covering up a lot of her behaviour.

You need to look after yourself. I recently found a carer support group which is extremely helpful with dealing with the anxiety that being in this situation causes.

You need a break.

take it.

the panic attacks are telling you that you need a break.

Thank you for the additional responses. @unsync I have identified a nearby care home that recently opened. DH visited and we could get them on the list for intake mid March once a home assessment takes place - therein lies the rub as obviously DPs would need to consent to this. I also spoke to an agency about getting in full time home care if say DF had to go into hospital, but again of course their ability to provide this depends on what resources they have available. I am worried that there is an emergency that will require me to go live there for a period as I simply don’t think I can, although obviously I guess I would have to if needed.

I maybe used wrong term for DM she occasionally leaves her bed using her rollator thing so she isn’t bed bound as such, but spends most of her day in bed. Physically she doesn’t seem to have declined as much as you would expect in 10 months of minimal movement.

I think it’s DM who is covering up DFs behaviour/abilities and I don’t think he would cope for long on his own. It’s become a horrible codependent relationship that isn’t bringing much joy to anyone. I guess it’s sweet that they want to look after each other - or are canny enough to realise that each needs the other to stay at home - unfortunately I appear to be collateral damage in the process.

I was hoping that maybe somebody had good recommendations for herbal remedies or CBT, to help me cope better.

@rookiemere The most useful thing I found was the support group. Speaking to people who have been where you are where you can unload everything with no judgement helps. Unless you've been there, you have no way of knowing how stressful and painful it is. I also do meditation with sound which is soothing.

I've done CBT, it won't help in a situation you are not in control of, but I guess it may help you react differently to the triggers. I'm not sure that herbal remedies are strong enough when your fight or flight response is in a constant state of readiness. I have had prescription medication for anxiety in a different situation. That does help. Also, go visit the Cockroach Cafe thread on here, lots of people going through the same or similar with their parents, everyone's just lovely and lots of helpful support.

I'm sorry to say that the situation usually resolves itself with some sort of catastrophic event which will force the solution. I'm sorry I can't be more optimistic, but it is grim. Your OH sounds lovely though, cherish that and find joy in the small stuff. 💐

@rookiemere I'm not sure CBT can help much when the issue is actually your circumstances, rather than your own cognitions and feelings being the issue. It's not supposed to be used to reconcile people to awful circumstances really. It's more for things like anxiety, OCD, etc, where there is a problem with things like perception of risk and perspective. Not sure that applies when your parents are declining in mental and physical health, won't accept help and want family to do everything they want to their exact standards, and you're dealing with ambiguous loss and anticipatory grief! I guess maybe if you're finding yourself ruminating a lot or catastrophising, perhaps it could be helpful though with that side. I tend to prefer the third wave cognitive therapies like Acceptance and Commitment therapy or compassion focused therapy, especially if you struggle with self compassion. Or transactional analysis if you find yourself caught up in drama triangles with family a lot. I used to use that as a tool in family therapy when that was a big part of my job (now moved up the greasy pole and don't do clinical work, but I do miss it sometimes).

Herbal remedy wise, I've had some success using melatonin and CBD at night when the thoughts are racing and I'm drowning in things to do and am tempted to stay awake and do them rather than rest. Also a good magnesium supplement and omega3. I've found a lot of supplements a tad pointless but those I really do notice if I don't take them for a bit.

Thanks @CrazyGoatLadyand @unsync. I am already an enthusiastic member of the cockroach cafe and find it very supportive, but it does seem as if others are dealing with even more horrible situations than me ( at least I don’t have a ghastly sibling) with better equilibrium.

I am reluctant to join a real life carers group as I am reluctant to see myself as a carer, but yes it’s the grinding responsibility that never stops that brings me down. Sadly several friends are in a similar situation so we meet up and moan about our DPs which does help. It’s just sad that so many of us are in a similar situation and I can only see it getting worse.

I guess - thinking about yesterday- there were a few things going on the day that made it more complicated than normal, plus I hadn’t had lunch. I think I need to be more realistic for future visits about what I can do on the day I go,and bring along food that I can stuff down in the car or something. It’s just been a huge shock. I pride myself on being quite a level headed person and I have never had ongoing panic attacks before.

I am starting a new part time job next week and I am hoping that will provide some relief and a change of focus for me.

It is such an awful thing to go through and so many of us too, with very little support from officialdom. Nothing prepares you for it. It's like jumping out of a plane with no parachute only to land on a never ending rollercoaster! At least we can all commiserate together.

For the panic attacks, look up box breathing technique - takes a while to get the hang of but it will calm you down and draw your focus inwards. Breath work is very good for calming the nervous system.

Good luck in the new job.

I so feel for you. Parents with tons of money but want YOU to do things. In their muddled view they want you to do it. They can control you and make a big old fuss.

I ditto what others have said about the post. Get it directed to you. The letters will set your Mum off and things that should take 10 mins take hours. I used to be given a list of things to do with the sad face and the occasional crying if I didn’t do it within their timescales.

Very elderly parents can be incredibly selfish and self absorbed. Mum used to say to me if she couldnt get me to do things then who? Good that you have LPA. That makes a big difference.

I remember at the hospital when Mum was in after a uti. Age UK were in the corridors trying to help adult children like me trying to support their elderly parents.

She kept calling me a carer and twice I had to correct her and say I wasn’t and had a job, a husband at home and was just trying to help out. Looking back she was correct - I was a carer. Mum wanted me to be one and although she didn’t want to be a burden I found myself in the role.

Think about things you can put in place like snacks in the car for emergencies (nuts, dried fruit maybe). Build things into your routine when you visit to help yourself - eg stop at the last nice supermarket before theirs and get a meal deal so you know you'll have easy food. If I'd done a long day at the parental house I would book a hotel for myself that night, rather than staying at theirs or driving straight home - so I knew I could have a few hours on my own to decompress, stare mindlessly at a TV and not have to do or say anything. I didn't tell them of course. Might not help for you but it did me.
I would push on the fridge issue as this ought to be something the carers could do if just binning out of date food. Can your DH pick it up with them?

A meditation app helped me maintain some of my sanity.
But so did realising that I can't do everything, can't change who DM is or the choices she made/makes.

I was referred for CBT once.

the referral was rejected on the grounds that the things I was anxious about were real and were actually happening.

CBT is largely about controlling anxieties etc by comparing them with reality. If your reality is genuinely such that those anxieties are truly based in it CBT will not help.

i recommend wine.