What About Long Term Effects?

Hi Everyone,

I am hoping someone can help me with this issue.

My Caree passed away a year ago and, at first, I was coping really well. I didn’t feel the need to cry very much, got on with my job, maintained personal hygiene and kept on top of the housework, whilst also managing to get away for a break for a few days before the funeral.

A few months later, another family member passed away and it seemed to ‘open the floodgates’ for me. I have not been able to return to my ‘normal self’ since.

A few of my ‘symptoms’ listed below:

  • panic attacks (limited to family members getting ill)
  • anxiety attacks (not limited to the above- seems to have become ‘the thing I do’ when something unexpected happens and I need to deal with it)
  • constant ‘on-edge’ feeling (worse at night, but creeping in to my working day now, too)
  • cannot relax/agitated/restless (constant)
  • health anxiety (for myself and those around me)
  • can’t seem to be truly happy when something good happens (sort of feels numb?), but can wholly feel everything when something bad happens
  • something in my head seems to be stopping me from ‘trying’ to grieve for my Caree (I’ll start to think about her, remember something about her condition and then immediately my head seems to ‘close up’ and stop thinking about her)

My question is: Is there any help for former carers who are suffering with these kinds of long-term effects? I really don’t want to go on any medication (I was prescribed some beta-blockers in October last year, but they seemed to make me return to the numb feeling and also made my hair fall out). I was seeing a MacMillan nurse before Covid hit, but the first lockdown put a stop to her coming to see me and I don’t have any means to contact her.

Any help gratefully received.

Thanks all!

This is all normal, there are no set limits for grieving. I’ve lost too many loved ones, I grieved differently for each one.

I am in a constant state of anxiety and hardly ever leave the house. My Mother died in January 2019 and I was ok until the april after which I had almost continual anxiety.

I am a bit better now but dread leaving the house and feel sad and afraid a lot of the time. 2 friends of mine have also died recently which has been hard.

I am taking homeopathy and have been referred to a social prescriber by my gp which is an amazing service. They aim to help you increase your sense of wellbeing. I am currently doing some breath work with a practitioner which helps me to relax.

Hooe you find something that works for you. Berevement is soooo hard.

I agree everyone grieves in their own way and there is no timeline to how and when grief affects you.

In addition, I wanted to reply because after several very stressful care-moments looking after my Dad, and being constantly ‘primed’ at night to spring into action plus other emergency events I was already aware that caregivers during/after the caree passing could suffer Post Traumatic Stress Disorder (PTSD). It hasn’t been studied in great detail but there are some published studies/articles which I came across specific to carergivers (see the links below)
When people think of PTSD they usually think about war veterans BUT anything that shakes us, can impact our mental health.
I’d recommend having a chat with someone I’ve put the link for MIND below, or give Macmillan a ring since you knew them before.
Personally, I’m intending to chat with someone at Maggies (https://www.maggies.org/) they have psychologists you can chat to…just to get a bit more aware before thinking whether more time with a psychologist could be right for me re. Bereavement and PTSD.
I hope these links and thoughts help. I know lockdown can amplify anxiety, so I hope your friends/this forum can highlight that you’re NOT alone.
best wishes.

I’m interested to see someone else thinks thy have ended up with a form of PTSD after a horrendous period, because I came to that conclusion a while ago about myself. There was never time to pause recover physically and mentally before the next disastrous thing happened. That’s why my sleep pattern is up the creek and I’ve put on weight. I thought a new bed might help me sleep better, so when I had a windfall I splashed out on the most comfortable bed I could find, but you can’t sleep well if the mind can’t switch off.

Hi Victoria,

Thank you for this. I have, since posting here, registered for the MIND online forum to see if that helps.
I don’t think the Maggies website is of use to me because it’s specifically for cancer, by the looks of it (bit misleading of me to reference MacMillan, sorry- they deal with other terminal illnesses, but, ofc, their main one is cancer so can see how it could be misleading). I’m really glad it’s something for yourself and others to use, though!

I think I’m going to ‘ride out’ the rest of lockdown, albeit on-edge, and see what happens after being less confined to the house (hopefully, it’s just that that’s amplifying things).

Oh, my Gosh- I could have written this myself, BB!
Latest development is nightmares :frowning: Had a terrible one last night (though seem to be having a few per week now) where someone broke into the house and chopped my dog’s toes off :frowning: Our minds can be terrible places!

I am sometimes afraid to go to sleep. Sometimes I will wake again within 15 minutes!
Last night was a bad one, nightmare, then no proper rest. All I’m fit for is filing today, practically shuffling around the house, no spring in my step at all.
Suffice it to say that SSD are causing me more problems. Why is it so difficult to even get agreement on whose job it is to check the bicycle tyres are pumped up, brake blocks OK etc. before staff take him for a bike ride? A new member of staff is now taking him of regular rides now, up to 10 miles on a Sunday, but I’m told it’s not his job. Certainly not mine 15 miles away, I’m too disabled with my arthritis to even use a pump properly!

I can really see how his shape is beginning to change back, but he’s still 18 stone 3 lbs, he should be well under 15 stone. My husband died when he was 15st 2 lbs. A target of losing 1lb a week was agreed, but that’s got lost between endless changes of staff.

Very latest issue? Mencap gave him a new tablet last weekend, which he loves.
Staff don’t know how to connect this to his printer copier.
They are told not to ring me directly, but go through the manager.
So I ask them to send me details of the model number of the printer, I know it’s HP.
Apparently it’s run out of ink - staff responsibility.
They send me the number of the ink cartridges, but I still don’t know the details of the printer.
This endless ping pong is really getting me down.
Today, I’m not just fed up with it all, I’ve slipped into real depression.
How can I ever be free of this??
At least caring for an elderly person you know they will probably die before you.
With a disabled child it’s a life sentence.

Just as you say… all this:

  • panic attacks
  • anxiety attacks
  • constant ‘on-edge’ feeling
  • cannot relax/agitated/restless
  • health anxiety
  • can’t seem to be truly happy when something good happens (sort of feel numb?), but can totally feel everything when something bad happens… anywhere!

After my son died in 2008 (quite avoidably through proper healthcare approaches and cooperation with Carers “3rd parties” as they called us) my entire retirement years I’ve had these effects but getting much worse as the years passed and there was no end or closure to my NHS complaint.The system seemed stuck and unable to appreciate or cope with the failures I’d seen before he died. What made it so bad for me was that the NHS Trust concerned were utterly deceitful and in complete denial despite the fact that I’d made complaints before he died and neither Trust nor GP did anything to improve their approaches as per policies and best practice.

I discovered the so-called independent Health Services Ombudsman (PHSO) was very obviously a government defence tool in a damage limitation exercise, and had no qualms in blaming, denying, mocking, belittling and mentally harming complainants–very likely coming from a vulnerable position–and taking full advantage of disability suffered through the caring and eventual death. Even the ‘chief’–but very amateur–Ombudsman was prepared to lie to avoid revealing NHS vagaries or criticism of the Ombudsman’s prejudiced system, then block any complaints of complainant abuse in that system. I’ve had to get psychological help and take medication just to cope with the effects of the Ombudsman’s incompetence, vile and derisory comments and eventual dismissal of my complaints. That certainly ensured nobody learnt from the harms and threats on my son, or ever identified people who I imagine carried on the way had before, harming more people, safe in their jobs.

Yes, so all of the above effects, unappreciated (in fact denied by those responsible); worse by the years passing and affecting every aspect of daily life with the reduced thinking and coping capacity. I’m now 73 and cant see how things will pan out from here, really. There’s so much incompetence and corruption in government systems these days the young’uns are going to have a harder and harder time getting access to due and proper government services they expect as a right, and carried out as per Gov. policies and intentions.