End times?

[doglady]

Hi all,

As some of you would be aware, I have been NC with my elderly parents for some years - I have posted about this in the past.

One of the big issues we had was their declining health/mobility and continuing choice to live in a hoarded and unsafe house. They refused to move, yet needed significant care. Their choice of course, but it was a significant stress and burden on their children.

When I expressed concerns a few years ago - serious health and safety concerns that all the family shared - it led to an escalation of dysfunction, which then ended up with me being essentially NC with most of my family as they did not back me up, despite doing so in private. It's a long and complicated story which I have outlined elsewhere on Out of the FOG. I had to step back for my mental health and that of my husband and children.

Other siblings have stayed involved with our parents in the past few years. As I live in a small rural community, I've been made aware from time to time how hard it's been for them all. One of my sisters until recently was doing the bulk of the care and then had a serious mental health episode of her own, due to the pressure of it all. She then stepped back from being at their daily beck and call to a large extent (while living with me for a few months) and is generally doing better now. 

Another sister sensibly chose to move overseas a few years ago, and my two brothers have visiting our parents occasionally and trying to take on the bulk of the care. It's all impossible of course. My parents also wouldn't accept 'outside' care, always some ridiculous problem or issue they'd come up with.

So basically my enF, in his late 80s and with major health issues of his own has continued to provide the daily care for my morbidly obese, doubly incontinent,  virtually immobile uPDm. It's been unsustainable, of course.

This past week, my sister told me that my father has collapsed and been delirious, and been taken to hospital by ambulance and it is not looking good for him at all. He was diagnosed as probably having cold sepsis and had a body temperature of 32C, in other words hypothermic. My mother was also taken to hospital the same day by a separate ambulance due to having an infected leg ulcer and sacral pressure sore and explosive blood-filled faeces. Now they are in the same hospital room.

I have since been told that their house is full of shit-covered furniture, bags of used incontinence products, off food and black mold. My brother got into their (always-locked) bedroom which was fully hoarded, and they had been sleeping on shit- and-urine stained sheets that had not been changed for what looks like months, possibly longer. I saw a photo. It is beyond appalling. You wouldn't let your worst enemy sleep there.

And now they are both in the same hospital room with their beds pushed together.

My father has basically been non-responsive for a couple of days, while my mother is still holding court regarding her health issues, which in her defence are very serious and she has to have surgery which she may not survive. So both my parents are looking as if this could be it for them.

I have a lot of very complicated feelings about this. I am very sad. I am angry. I am somewhat numb. I am also accepting.

This scenario was from my perspective all so predictable and all so fucking avoidable. They had five basically decent and caring children who tried their best and it was never good enough and then everyone turned on me to varying degrees because everyone else was in various levels of the FOG and needed a scapegoat - and here we finally are.

Anyway...I decided to go and see my father. I visited the hospital yesterday. He was in a lovely, clean, warm bed - an emaciated old man, lying on his back, unshaven, no false teeth in, eyes closed and mouth wide open. I held his hand and kissed his forehead, I told him who I was, that I love him, and that I so wish things could have been better between us. He squeezed my hand, and tried to say something but was otherwise pretty unresponsive.

I didn't really do it for me. I just wanted HIM to know I loved him.

I also take some comfort from knowing that at least he wasn't dying in a cold shit-stained hoarded bed, because I have no doubt this is what would have happened. I also know that my mother would have tried to get my brother to drag my father's body out of that bedroom before anyone else saw him in that terrible bedroom. That may sound like a shocking thing to say but I know her so well, I absolutely know she would have tried to do this.

I didn't end up saying a whole lot to my mother, just that I hoped she was doing ok and she wasn't in too much pain. She started to say that she might have caused my father's current condition due to arguing with him about his driving recently. I said to her that she was drawing a long bow and I was sure it was nothing she'd done to cause the current situation (other than him being totally ground down by the past six decades of hell of living with her - was the bit I didn't add).

Not sure if I'll go back to the hospital or not. I've offered for family members to stay here if they need, some of whom I have been NC with. Not really sure what to do.
 
It's all a very tragic and totally fucked culmination.

Apologies for swearing, but I'm angry at the moment, although I know this will pass. I know you all get it. Just had to share here. Thanks for reading.

[walking on broken glass]

Doglady, I am so sorry. I am sending you lots of virtual hugs. This must bring up lots of complicated feelings and you are handling it so well: with so much empathy for everyone but also clarity for yourself. It's sad but your parents brought all this on themselves and you did all you could have done. I hope this gives you serenity.

[xredshoesx]

thinking of you today doglady. 

[TimetoHeal]

I am so sorry, dog lady.

This is just such a tragic situation that could have been avoided.  As terrible as it is, it was their choice.  This was inevitable with the choices that they made.  It's so sad.

I am so in awe of you for being able to go and visit your father at the hospital and stay cordial to your mother.  You are so strong. 

[notrightinthehead]

same here - I want to send you lots of hugs. So very sad and you are handling it so well. You extended a hand to your siblings by offering your home, the ball is in their court now.

[GoodPesto]

Hi Doglady,

I hope you are doing ok. As another scapegoat I can empathize with the dynamic upfront where you could see it all coming, tried to prevent it from happening and were excluded or had to exclude yourself as a result, to in the end see you were right when you really would have not wanted to be.
I am sorry for the pain you've been through.
Sometimes over death and dying of family members there is some healing between the ones left, sometimes toxic dynamics get amplified. Wishing you the best while you figure out what's good for you in this special time.

[looloo]

Hi Doglady, I can relate to these events being the natural consequence of your parents' choices.  I'm curious about the ambulance being called.  Did one of your siblings happen to be there at the moment your father collapsed, or did he/she discover your parents and then called the ambulance?

My now deceased Nmother had several falls where she was discovered hours later.  My aunt wasn't discovered for at least a few days.  It's a very predictable situation, sadly.

[doglady]

Thank you all so much for your kind words. They do really help.

Update:

I believe a nurse who visited to dress a leg ulcer for my mother called the ambulance for her. Was the first home visit as my father had recently been banned from driving, so the nurse probably assessed the terrible living situation and thought updM should be in hospital. Good call.

Regarding my father, I think one of my brothers may have turned up around or been there already and he called the ambulance for my father as he wasn't making any sense when asked his name etc.

Apparently my father - after a few days of being openly assessed as dying by medical staff - is now sitting up, talking and eating everything he can get his hands on.
Which tells me that perhaps he was instead so horribly ill because of his very low weight, dehydration, mould in the house, poor hygiene, extreme cold, underlying infections etc, plus the absolute exhaustion of caring for uPDm. Who knows though, it's a day to day proposition at this time. At least he is being fed, and is warm, safe and clean. My sister sent me a photo of him sitting up, eating and smiling, albeit very weakly.

While I am very frustrated all this wasn't realised a lot earlier, I also do understand.

My uPDm in contrast is going downhill fast and cannot be operated on. ECOG of 4. She has ulcers and pressure sores which have now caused bone infections and has a bleeding bowel tumour. All she can have now is palliative radiology at some point. She will have to go to another hospital for that and understandably does not want to leave my father. She has also been told very definitely by medical staff that she cannot return home under any circumstances - because she had been asking!!!!! And praying for my father to be able to return home with her!!!

As for family relationships at this point, they are mostly cordial but not overly close with one brother. One brother I haven't spoken to directly as yet. I have closer relationships with my two sisters.

I am mostly being kept updated by the sister who lived with me for a while, and some info is coming from my youngest brother who is at their bedsides every day.

Predictably there has been already talk of funerals and a major cleanup of their filthy, hoarded and rundown house. I have indicated from the outset that I will pay my 20% portion of the funeral bills and will attend funerals when the times come - but I will not be participating in a hoarder cleanup. I will instead pay for junk trucks and large skip bins. I won't be paying for any (much-needed)  renovations. People may wonder why I'm even thinking about this stuff right now but I've found it's best to be prepared in terms of what you're willing and able to do in my family , otherwise lots of browbeating and manipulation might be brought into play. I am generally a very helpful person but there's only so much I can take. My husband stands with me on all this and my young adult children have been great.

[doglady]

I also won't be entering into protracted discussions about care homes etc with my siblings. My husband becomes very stressed when I have any involvement with my FOO because he sees the effect it has on me, and I also need to think of my FOC in all of this.

I have to balance my (PD parent trained) feelings/self-accusations of selfishness that I am not doing enough for them with my own mental wellbeing. But I still do feel selfish when I put my needs first.

I'm also no spring chicken, have a young adult daughter with a chronic health condition of her own which is highly stressful, and on top of all this I  and have recently had a BC diagnosis for which I have had surgery and will be soon be receiving further treatment. My FOO (bar the one sister who lived with me) are not aware of my health and I have no intention of telling them. I also don't want to make what's happening at the moment about me and my health. I am also self-employed in an helping profession and finding it very challenging to maintain running a business at the moment.

It's a lot. But see, even saying all that, I feel it makes me look like I am weak and 'fishing' for sympathy. I still feel like I shouldn't make any of this 'about me' and even posting here is like that. Gahhh! I could kick myself. This bloody training we have from such a young age to never have needs of our own and to always consider the cult leader's feelings and wants before our own is just so intense. I mean I do consider my own needs but I also have such negative feelings about doing so due to being told how selfish I was as a young child. I still really beat myself up over it now and then. I guess it's still a major flea for me, one which I have to keep working on.



I'll most likely need to keep updating and letting my thoughts out on this forum. Having said that, I am also feeling like I am selfish for posting on here and 'making it about me' and I should be doing better at posting for others on here. I can feel the eye rolls and know I shouldn't feel this way, but this is how intense it is at the moment. I'm quite triggered actually. Anyway, I do know that this will all pass. Sorry for rambling. Happy for any thoughts, ideas etc.

[Sneezy]

Oh doglady, I'm so sorry you are going through this. I think you are wise to be thinking ahead with regard to your boundaries. Absolutely, positively do not get roped into cleaning up your parent's house. If there was ever a time to throw money at a problem to fix it, this is it. Chip in towards a service that will come and clean out the house for you and your siblings. Or don't. It's completely up to you to decide what you will and won't do.

You are not being selfish. Trust me on this. It may feel selfish because you are taking care of yourself and setting boundaries. But your feelings and actions are perfectly normal and healthy. You are actually being pretty generous and strong. Just the description of your parent's house makes me want to run in the opposite direction. I can't imagine any sane person volunteering to set foot in there, much less volunteering to clean it up. Nope, nope, and nope!

Hang in there - sending you all the good thoughts and hugs you need and deserve!

[walking on broken glass]

Doglady, please think of yourself and be 'selfish'! You are doing all you can and, believe me, it is enough. Thinking of your limits and setting boundaries before anything final happens is smart. I am sure your husband and daughter say that to you all the time but I will say it once more: not taking on stuff that doesn't belong to you and you don't have the mental capacity for is healthy.

[Rebel13]

My heart goes out to you, doglady. I'm so sorry that you are going through all of this. And as everyone else has said, you are handling it all amazingly well!

One dynamic I've been thinking about lately, and that I see you exemplifying here perfectly, is that our early training as children of dysfunction simultaneously makes us super competent AND unable to recognize and/or give ourselves credit for that. You are the opposite of selfish, obviously; just what you post here shows how you are thinking so much of others, your husband, children, clients, and siblings, as well as your parents, and doing as much as you can to care for them all. The cherry on top is that you are not abandoning yourself and your needs in the process!

You sound so clear-headed, thoughtful, caring, wise and analytical in taking care of current problems, figuring out and holding your boundaries, and planning for the circumstances that are likely to arise. I'm so grateful you are sharing these events, your thoughts and plans and actions here, because it is an example for me. I know I'll think about and even refer back to your words when my mother reaches her end times. That will probably be in the next few years, and I will have to decide how to handle it, how to manage my relationship with my sibling and his family, etc. I hope I manage everything as well as you are!

[doglady]

Thank you WOBG,
I feel I have done all I can. It is not 'enough' in the eyes of those still in the cult but I know it is all I could do and stay somewhat sane. And it is true that perhaps I am not being selfish. I know that logically - it's just that I also recognise how a feeling of selfishness lingers all the same. It's my internal 'software programming' of course, nothing more. I need to keep myself aware of this and say 'thanks Brain, for throwing up that old story,' It's funny, in my line of work I see this all the time when working with clients and I use the ACT approach, which is very helpful.

I need to be gentle with myself and remember that during very difficult periods I am allowed to not be on top of things, and that it's not just down to me to solve everything, or indeed anything really. I also have to think of my own health at the moment. I've been also grieving what I thought was a close friendship, who hasn't really been there for me during my illness, but I've heard this can happen when one gets cancer.

Sneezy, you are absolutely right that no sane person should set foot in their house. I've tried to warn against this, with all the obvious health risks. But my siblings seem determined. Oh well, we can only control our own actions.

Rebel13, you are so right about that dynamic of the early training which makes us very competent but unable to give ourselves any credit. I tend not to give myself credit because that would be 'getting above myself' Also, 'you're just so competent' has often been a whip disguised as praise in my family, the aim being to drive me ever harder - to cope, to support others, to keep on bloody going. I'm feeling pretty burnt out in all sorts of ways. I think I might have to investigate becoming incompetent. 
And I am very happy to think that my 'case study' can help anyone here in any way. I do often go into an inordinate amount of detail because I think a narrative does help. And we are not alone in this.

[doglady]

Another update: father is now sitting up, feeding himself, and wanting to walk around. Pretty strange for a man who was pronounced 'dying' and for whom 'it might be a matter of hours' a few days ago. All the docs and nurses are apparently 'gobsmacked'. My siblings are now 'angry' with staff because 'they shouldn't have counted him out.'

I get where my siblings are coming from and it's important that they give the hospital some serious feedback, but I'm also going to cut the docs some slack here. I'm no medico of course but I can only conclude that because the docs did not really know the extent of the awfulness of my parents' living situation, then of course they weren't aware of all the contributing factors. - ie. cold, stress, damp, starvation/malnutrition, exhaustion, filth. They simply saw a very elderly gentleman who was thin, delirious, virtually comatose and extremely ill and therefore thought he was at death's door. Honestly, though, you look at my mother and it's as if she's been eating all his food and not allowing him any, and although I know this might sound very mean, I'd be surprised by nothing at this stage. No wonder he was hypothermic. I'd estimate he weighs about 55kg max (120 pounds). He's always been thin but that is still extremely light for a rangy, six foot man.

But...he had choices too, of course, all along the way. But Stockholm Syndrome is very strong in this pair. He had become so helpless over the years in terms of what he was 'allowed' to do and he's never been the assertive type. The classic enabler.

Anyway, he is now being fed (and has been eating very well!!) and is now also warm, dry, clean and not having to care for a woman with extremely high needs and demands. That'd markedly improve anyone's health and wellbeing, I'd imagine. He literally looks like someone who's been finally released from a prisoner of war camp. That's a shocking thing to say, I know, but that is all I keep seeing.

Anyway, they have now been told that they both need to go into aged care if they come out of this episode. I believe they are reacting in...interesting ways, eg. denial, resistance, etc and pretending to agree to keep staff from knowing the real truth (a particular speciality of my mother's). All very predictable.

I will totally back the medical staff up on this but likely from a distance. I'm going to leave it up to my sibs to negotiate this one. Most of them turned on me or ghosted me last time when I tried to speak some reason about my parents going into aged care. So I don't necessarily trust any of them not to turn and scapegoat me now. I promised myself long ago that I won't be the sole front line ever again in my FOO.

Thank you all so much if you've read these very long posts. It means such a lot to know that there are people all over the world who really get it and who don't try to make me feel like an absolute arsehole for not kowtowing to my FOO (because as we know, plenty of people from so-called normal families can certainly do that, sigh).

If it is ok I will keep using this thread as an update thread as it all unfolds. It's really helping. Thank you.

[walking on broken glass]

I promised myself long ago that I won't be the sole front line ever again in my FOO.

What an excellent decision and well done for honouring it. You have every right to keep your distance, especially since your siblings turned on you last time you tried to interfere. Let them deal with the negotiations.

Please keep writing here! I hope we can help a bit but, as Rebel also said, you are helping us too by showing us how to be compassionate and empathetic but also keep a safe distance at the same time.

I am sorry about the cancer and the loss of your friendship. It is true, some people don't have the capacity to react as we would expect and want them to. I didn't have cancer myself but I remember when my mum did and I was studying at university, some friends didn't quite get how difficult it was and they didn't like me talking about it. Almost as if it were a miasma that they would contract. Look after yourself and lean on those who can support you in meaningful ways.

[xredshoesx]

@doglady keep posting.  I feel like unlearning that I had to be THE ONE in many aspects (for my foo when I was still in contact, at work, with my friends and ex) was THE HARDEST thing I had to do as part of my recovery.  you are 100% right and justified to pull back and focus on YOUR HEALTH and your FOC/ husband and children.  just being born into dysfunction doesn't mean you are liable for fixing it.  sending strength today and keep holding those boundaries sis!  <3

[Rebel13]

I need to keep myself aware of this and say 'thanks Brain, for throwing up that old story,'

Love this! A few times I've been able to disidentify from my thoughts/emotions like this, and it's amazing the relief it brings.

I've been also grieving what I thought was a close friendship, who hasn't really been there for me during my illness, but I've heard this can happen when one gets cancer.

Most definitely! I had endometrial cancer and a hysterectomy in 2023 and several people in my life were completely unsupportive.  It seems like one of those experiences that shows us who is really in our corner, who has the capacity to be there in the hard times and who are the fair weather friends. In fairness, I get it's hard for people to confront serious illness and mortality, especially younger people, but it's still not an excuse. On the plus side, I reconnected with an old friend who was wonderful during the ordeal and since, and I feel lucky for that.

I tend not to give myself credit because that would be 'getting above myself' Also, 'you're just so competent' has often been a whip disguised as praise in my family, the aim being to drive me ever harder

I'm so sorry your talents and abilities were used to manipulate you. The curse of competence is real, but I also hope you can reclaim the concept for yourself. It's pretty awesome to use those skills to make our own lives better, and for the benefit of people we love who love us back.

And we are not alone in this.

So true, and so hard to remember in the hard times. I'm glad you're here and thank you again so much for sharing.

[looloo]

Hi again, Doglady, thanks for the updates and more details.  Seeing end (or close to) end of life health conditions, the decline - it's never easy and no one really can predict the pace.  My now-deceased Nmother's facility gave me conflicting advice about engaging hospice for her about 6 months ago.  Her main caregiver sort of blurted it out over text to me, suggesting that it was "time". I was really startled by that, spoke to the administrator, who said in her opinion it wasn't time yet. 
Wouldn't you know, about 3 months later, it was absolutely time.

[GoodPesto]

Hi Doglady, I had similar thoughts like looloo when I read your update. From working in elderly care I know though that dying often is a process over a couple of months with a few close-to encounters and that sometimes people get significantly better before they finally die. So it's not that uncommon that it looks like the staff exaggerated or is "wrong", and it's often discussed within the staff if one should inform the family or not, because it might be one of the few times death comes closer and you for sure do not want to miss the last time but also do not want to be like "s/he dying" like last month, and the month before, and last week. You might be spot on with your assumption that you're father is recovering from the pretty tough circumstances of course, sharing this for understanding. I am learning a lot from your posts and am joining you on the never-again-sole-front-line-side. You got this.

[doglady]

Thanks to all for your thoughts.

GoodPesto and looloo, I am interested to have read your perspectives about the waxing and waning of geriatric health. I am therefore keeping a very open mind about what happens next in terms of my parents' respective health statuses. I think some of my siblings are in denial that my parents will ever die. A couple of them are in quite a bad way, for adults in their 50s and nearly 60s. I would hate to think they are taking things out on medical staff. However, that's out of my control. And I guess we all have our varying levels of closeness.

And yes, xredshoesx, I agree about us having to unlearn to be THE ONE who tries to fix everything. These days I don't default quite so much to this mode so maybe I'm getting somewhere.  I still forget though in times of stress so thank you very much for reminding me.

Hey Rebel13 and WOBG, I am sorry to hear you lost some friends when you or family members had cancer. I'm starting to think that some of our so-called friends are there for the good times only. I understand that not everyone can handle it. And in a way, this has also taught me who I can and can't rely on. They have been a few surprises both ways. I am pretty self reliant (part of being 'capable and competent' isn't it?  ) but I have really needed some support lately. The friend of nearly six decades who hasn't really been there for me through the breast cancer diagnosis and treatment is certainly not going to be leaned on during this particular episode with my parents. I haven't even told her about it. She's old enough to know better but when I think about it, she's either full on and making a big fuss of helping or nowhere to be seen. There's not much middle ground.


Today's update - according to sister who drove another six hour round trip to see them - is that my parents are still in the same hospital room. My mother is singing along with Songs of Praise (Sunday here) while my father tries to sleep after having a wakeful night of talking to his dead friends as if they are in the room. He has Parkinson's so this is somewhat understandable. But the neurologist is looking at adjusting his meds to try and calm all this down a bit. You couldn't make this up.


Thanks for reading.