New and struggling.

To forum moderators, feel free to delete this if it’s not appropriate as an introduction.

Please read this with a bit of humour in my voice, where appropriate. If you’re rather not read through this all, just read the last paragraph, where I’m looking for help. The Lords name is used in vain but I don’t use the F-word. I talk about cannabis and am impatient with benefit bitching.

The story starts here:
I’ve been caring for my wife, Sara, for a year. On new years day 2019 she had a stroke, got to the hospital on time and the clot dissolved. Unfortunately, it left her with FND, right side paralysed, multiple daily seizures, pain, anxiety, acrophobia, incontinence, depression, significant opioid prescriptions, a prescription list that is three or four pages long. Oh did I mention asthma, oh my….

In March 2019, 3 months later, her mother 86, who had moved up from England to Scotland 7 years ago, died at home on the day she came out of hospital.

At the end of March, my employer did not renew my contract. As it turns out, my wife needs a lot of care and I could not work anyway.

Our friend list has dropped dramatically partly because they can’t face her seizures, rather violent and last less than a minute. All they hear from her is about the condition, the problems and I relive and am reminded of how bad things really are. Reality is a real downer. Oh, I’m on antidepressants that keep me from suicide, just.

My kids live in the main house. We live in the granny flat…. Middle of nowhere in Scotland, I wish it was in the suburbs of Surrey, worth millions.

It gets more complex. The children are from my first wife, who died in 2007, unexpectedly and suddenly. The children were 14 and 9 at the time (girl and boy). Try buying a petulant 14-year-old a bra without looking like a pedo. (it is now funny) Fortunately, they are both survivors and copers. Our daughter doing well as a tattoo artist. With a smile, she occasionally reminds me of my concerns about her choosing an airy-fairy art degree, like her mother. She is raking it in and has just bought a brand new car. The boy has just finished an electrical engineering degree and starts his first job in two weeks. Do they help? Other than an odd chat, not really. Partly because I don’t want to burden them and Sara is embarrassed about her condition.

Back to the present.

We found out that cannabis reduces her seizures from 4 to 6 a day down to one every two weeks. It has also reduced her opioid consumption for pain, anxiety and the incontinence has also improved. Oh dear God, it’s complex working with drugs that should not be illegal, that you can’t overdose and one organic plant one can grow in a greenhouse with your tomato plants. Cannabis can replace handfuls of (expensive) pharmaceuticals that are both dangerous and have significant side effects. Besides a ‘minor’ legality issue, it has improved her quality of life dramatically, but it’s expensive to buy and risky to grow. Yes, I was one of you thinking – hippy stoners (back to the stereotypes) should get a grip and stop being wasters. What I should have dones was comparing alcoholics to stoners. In case you need a reminder, think of deaths, violence and liver siroccos. A good friend lost her partner a month ago, who basically committed suicide by drinking himself to death.

My folks live about half an hour away and like our friends can’t cope. Chocolate teapots……

Medically nothing happened after Sara came out of hospital in March 2019, Most medical professionals hear half of her conditions and run for the hills. However: We went to see the FND specialist a month ago and after a week in hospital, he refused to treat her because she has too many other issues to deal with the FND. Not pushed away but delayed (for a year or two) and in the process changed her anti-depression meds.

The new meds should lift her mood but Oh Jesus H Christ, it is like living with Alzheimer’s. Her memory has gone. I had a crap night last night so I tried to have a snooze this afternoon. Well, that was a bad idea: I was woken when she had a seizure and then again when she could not find me. We have a chalkboard next to her bed to remind her of what day it is and if there are any events happening or I’m asked relentlessly what day it is and what time is the (imaginary) doctors appointment. Then at 23:45, her medicine draw opens I can hear pills being popped. When questioned it gets heated rather quickly. Hang in your Alzheimers carers, you have some serious grit and should be proud of how you cope.

All the medical advice for me, as a carer, is to have time for me. Sorry, did you hear the hysterical laughter… It was my laugh. Part of my problem is I don’t know what to do when I get an hour free.

My day starts making coffee, then breakfast, then cleaning the kitchen/washing/clothes. Finding her walking stick, hidden in the most amazing places. Trying to work out what she’s saying when her sentences are two words long. “that thing?” no context. Shopping is a disaster, I have to push the wheelchair at the speed of her brain’s ability to process the images. Online purchases have calmed down, it started with a cruise, flying to the Caribbean, and cruising back to Europe. I had a text from Debenhams informing me of a delivery. When asked I was told it was a surprise. It was in more ways than one.

I bow to the steel of mothers. It’s really hard. Okay I’m using a feminine stereotype and deserve the flack but I’ve not had caring or housekeeping on my career radar, I had an idea I was going to be a company director or something similar when I retired, not loading a washing machine with urine smelling clothes. I’ve also found out that it’s every day, all day, not Monday to Friday. Another revealing discovery is that if I don’t do it, it does not get done. (hoover, dishwashing, picking up cups, emptying the bin) Again, I hark back to mothers who have husbands who don’t give a shit. Although I was not a complete bastard, can cook and did, helped with kids and chores, I certainly relied on both my lovely wives, rather heavily.

Our local carers group has a boys meeting once a month. Normally the first half-hour is talking about football (shoot me now) and then they get onto benefits and then perhaps for 15 minutes we get onto the really helpful stuff. One of the chaps did not know how to clean his wife’s ‘bits’. It was remarkable how all these macho boyos suddenly explained, without using the actual medical or slang names, how to do it. That’s why the group is so good, for that 2-minute discussion.

The benefit stuff: yes I am now on benefits and although I was not born here, but in a colony, I’ve worked here for nearly 30 years and paid tax, hard tax, at one point I was paying 5k a month. (heydays of the computer manufacturing that is now in China) I’m happy to accept the weekly carers allowance. At the same time, I want to remind y’all bitching that Khayelitsha near Cape Town is a tin shack township. The nearest water point is 200 yards from most houses. Not the toilet, the tap. There is no social security, the family supports the family. If you have a job, you send money home. As an aside, HIV affects about 80% of the population, corruption is rife and crime is a way of life.

With that context, it makes my complaining sound so facile.

I’m looking for coping mechanisms, what I can do with my few hours of free time, how you take advantage of offers of help, either for Sara or me.



Welcome to the forum. Why are you doing all this without help???

From what I gather, it’s often the case that specialists like to get other conditions stabilized before treating FND, functional neurological disorder.

So sorry to hear all of your issues. It is so tough, so sending huge sympathies.

Regarding coping - I think the short answer is that you shouldn’t be coping on your own to this degree. It sounds as though you could at the very least do with some carers coming in to free up time for you. Sorry if I missed this, but has your wife had a needs assessment from social services?

My Mum cared for my Dad with v complex needs for years all by her self. Refusing all help. She ran herself into the ground and now has Alzheimer’s herself. Please don’t let this be you.

Also regarding comparing yourself to those living in townships in South Africa. I’m not sure that is helpful. All of this is relative. Whist we absolutely should think ourselves lucky, I know this helps me put things into perspective. Please, don’t underestimate your own load. I suspect those living in such communities with similar issues have a family/community support network to help them, which sadly doesn’t exist here so much (hence your friends doing a runner). I also suspect life expectancy after a stroke is probably pretty minimal and so care isn’t such a long term thing as it is here with our advanced medical care. Caring for someone here is often a marathon and not a sprint!

Have you come across A Self Pigs Guide to Caring by Hugh Marriot? If not get yourself a copy. I think it would help. I was lucky enough to meet Hugh and he cared for his wife and is very far from a selfish pig!

Have you asked Social Services for a Needs Assessment for your wife and a Carers Assessment for you?

This will assess the amount of support she needs to live her daily life, diagnosis is not important in this context.

Hello and welcome

Can you ask for a needs assessment? This is done by a social worker with you. Call up the local council tomorrow to ask a social worker to come to do one.

Thank you all for your replies.
It appears the only way I can get support is if I pay for it. If you’re under 16 or over 65, you can get help but as far as I’ve been told, I’m on my own.
I will check again with the carers group when I see them at the end of the month. It would a huge difference if I had some help.

Thank you for your advice and I’ll keep you posted.




It appears the only way I can get support is if I pay for it.

As a result of both Needs and Carer assessments ???

( If you want the full sp on both , shout … I’ll post the links. )

If so , far too common !


Grant, who has told you this?

Any decision about whether or not anyone is eligible for funding can only lawfully be made AFTER a Needs Assessment or Carers Assessment!

Hi I 'm Steph I have been full time career for my husband. ( primary progressive ms it doesn’t get better). For some time .We are now at the point where he is bed bound incontinent and fed through a peg (your biggest nightmare) however we have lots of friends who visit Martin he still reads,takes an interest in telly and his children and is ok. There is adaptation and hope. Let me know how u r