6 months on

[Broostine93]

Hi everyone,

I am so grateful for all the responses to my post. I can see that you're all feeling strong emotions, like me- certainly helps not to feel so alone in this!

Sadly, my emotions have gotten the better of me recently. I had last week off work, to try and de-stress and generally take care of myself for a bit. Well, that backfired dramatically, I must say. The Thursday evening before my week off, my dog became ill- he vomited quite a lot (very unlike him and, if ever he does, it usually precedes a grand mal seizure, so I naturally panicked a fair bit). I got straight on to the vet emergency number, but they wouldn't answer (worst pet-related nightmare ever!) so I rang another vet and took the dog over there (this was at around 4am and had work in a few hours). Anyhow, the vet gave him an anti-vomiting jab and told us to monitor him at home. The next few days were spent on-edge. On the Monday night, it seems the illness progressed to lower in the stomach and so there was a bad bowel movement, which also included blood. Of course, I'm there panicking again so we rush him to the vets again (this time, we returned home at 2:30am in the morning, so you can imagine we're a bit tired by this point and my poor partner has to get up for work again the following day). The vet concluded that the dog had gastroenteritis, gave him some meds and sent him back home with us.
This progressed into my being unable to be in the same room as the dog due to my anxiety becoming quite bad (sat on the edge of the sofa, constantly watching him and jumping at any 'unusual' sounds or movements- you get the idea). My partner has been sleeping downstairs with him because of how bad I've been around him.
It all sort of came to a head last night- the dog woke up and seemed to pull his 'I'm in pain' face and I was off. I literally ran into another room, crying, hyperventilating and shaking to the point where I couldn't walk properly. I ended up saying I couldn't do this anymore and was suggesting that I leave the house and my partner (there was talk of rehoming the dog, but I can't do that to my partner- it would crush him and he'd end up hating me for it). Eventually, we compromised and so we're sending the dog 'on holiday' for a week to the dog sitter that we normally use when we go on holiday (gives him a break from me, also, as I'm sure my anxiety is rubbing off on him). In the meantime, I've called my doctor and explained what's gone on (this is obviously brought on by the MND journey/experiences) so I've been prescribed a beta-blocker and therapy.
I know that MND is a horrendous disease, but I never believed that it had affected me so badly. I'm glad there's help out there and I am so hoping that these tools work to bring me back to 'normal'- I don't know what I'm going to do if they don't, as this situation can't continue indefinitely.
I feel a bit stupid (and indeed, some family members have been a bit like 'seriously? he's a dog' when they've heard what's been going on), worrying so much over a dog, after everything else that's happened, but I suppose the mind works in a very weird way.

[Tess]

I'm sorry for all the losses mentioned here. The grief is huge.
That's my big fear right now...the silence, the gap where your best friend should be. It's a scary thought that I know many have gone through already. I try to prepare myself for the future of not having him around but I don't think anything will prepare me.
A horrible disease robbing both the sufferers of a healthy long life and the families of time with their loved one.

[shrew]

Thanks Ellie, I always think of you too.
Puddy , I wish that I had some words that could help you through all this. I lost Mick 3/7/19 , 11 and a half month after diagnosis. I am so sad too. I hope that you have people around you to help you through all this, It is the worst disease ever. It robbed me of my Husband , my girls of their Dad, my Grandson of his Grandad. All our hopes, dreams, plans for our future were destroyed, he didnt even reach 60. I feel lost and alone. Puddy pm me if you need any help or advice, or someone to talk to.

[matthew55]

All I can tell you is that time is the only thing that helps. The pain becomes a memory but the love is eternal.

[richard]

Puddy Just to say I’m thinking of you and wishing you strength and peace.

Richard

[Deb]

I'm so sorry for your loss and that your dreams of life in Spain together have been cruelly snatched away.

I hope you have love and support from friends around because it must be very lonely. I was in hospital in Spain in January and whilst the medical care was very good I felt very isolated because my spanish is not fluent enough to risk using it in discussions with medical staff.

I don't think we ever get over losing someone we love but I hope in time your memories of happier times will surface and give you comfort.

Love and hugs to you,
Debbie x

[Puddy]

Hi - I can relate to all of this. My husband, Nigel, passed away three weeks ago. I live in Spain and after he was diagnosed, apart from being referred to a speech therapist (waste of time) physio three times a week, which was so hard to get to as Nigel took 20 minutes to get in the car. Then it seemed we were just put aside for three months. I emailed the GP and said I was worried about Nigel having no appointments but he just said I could always go to A & E. I'm sure the medical profession in Spain are all sociopaths. Anyway, the last time he was in hospital the doctor allowed me to sit with him. The next morning, when I went to sit with him again, the security guard more or less called me a liar and said that where Nigel was, nobody was allowed and I couldn't have been sitting with him. I went home in tears and complained to the hospital. A lovely doctor phoned me and said to come back and say "Dr Victoria is waiting for you". This I did, much to the annoyance of the security guard. Anyway, to cut a heartbreaking story short, I asked the nurse if I should stay that night and if there was a chance Nigel wouldn't make it through the night. She said he might not, so I stayed all night and he passed away at 8.30 the next morning. I called the nurse, who acknowledged me, but nobidy came into the room for two hours. I was left on my own to cry. The doctor came in, gave him an ECG, said "here's his wedding ring" and left.

I didn't know what was supposed to happen next, or anything. I rang the insurance broker, Charlene, who talked me through everything. She said to go home and the funeral parlour would come and get him, and it's better if you're not there then. Well, Nigel didn't actually go to the funeral parlour till the next day because he had to have yet anothe covid test before they'd take him. I've never felt so alone.

Nigel's best friend had been visiting at the time and he cancelled his flight so he could attend the funeral, which was four days later. (It's usually the next day in Spain). I had no family here, either mine or Nigel's, but all the friends we'd made in our community came to the service, which was taken by an English vicar. I keep remembering that Nigel didn't look like himself - where his mouth had been open, the seemed to have shut it wrong so he didn't look right.

After the service, the usual custom is to go to the crematorium and watch the cremation. I said good bye to Nigel in the funeral parlour.

Since then, I've cried every day, sometimes only once, sometimes most of the day. Sometimes it's for me and my loss, sometimes it's because Nigel was so happy when we retired here three years ago, and it was taken away from us, but mostly for the way he suffered. I don't think I'll ever get over it.

[Music man's wife]

Chrissie I remember when you used to write about your Grandmother. Nobody could have cared for anyone better than you did.
I remember when mother in law died, she'd lived with us and we'd had a very difficult 6 months before she died. I really only grieved for her when I'd recovered from the trauma of those 6 months.
I hope life is better for you now though your Gran with always be with you. Everyone should have someone like you in their life xx

[Ellie]

Hi Shrew, you and your family are often in my thoughts.

Never forgetting Mick either, or his bikes!

Sending love and a big hug to you.
Ellie.

[shrew]

Thanks Debbie, it's an awful thing, I don't think that I will ever get over this. I feel for everyone on here x

[Deb]

Shrew, Its lovely to hear from you although I am so sorry you're lost and lonely.

You must Mick terribly.. Its a cruel thing. I hope you have family around although lockdown makes this hard.

love and hugs to you,
Debbie x

[Deb]

Hi Chrissie,

Its lovely to hear from you. I've wondered how you were doing... Your Gran was " lucky " to have you caring for her and I hope you allow yourself to feel proud of yourself.

I know how you feel about lockdown. When I was working full time whilst juggling childcare I dreamt of staying in bed and reading a book. You can definitely have too much time to think.

Take Care of yourself
Love Debbie x

[shrew]

nice to hear from you Broostine. For me its just over a year since I lost Mick , so sudden. I still miss him so much. I feel lost , sad, lonely. I was coming to the end of my therapy but had started a group counselling session which is of course cancelled. I still log on here 3 or 4 times a week. I see the wonderful people welcoming the new comers. I hate this disease that robbed me of my Mick

[Broostine93]

Hi

I am so sorry for your truely horrible experience with carers and nursing homes. (staffing levels and if you have a caring bone in your body, you burn out)

No excuses though

It is nearly impossible to navigate the "care system" as a solo person. The trauma and exhaustion plus bereavement.

My main experience has been in dementia (until recently now in the MND world)

and even with 2 daughters and 2 granddaughters (and I was a district nurse), we struggled to get care for Grandad, as we were all working
and frankly the system is broken ie 15 minute visits by stressing and untrained teenagers

My grandad's story was used as a teaching example of what not to do (from the professionals) back in 2010

It was practically a full time job making sure, the "carers" were doing the basics.

They believed him when he told them he had eaten, even though he could not use the microwave or physically carry the food from the kitchen.

He started losing weight.

You did your best against a cruel system, that is really trying to pressure at least one person in the family to give up their job and move in.

Well done in keeping your job, the number of carers that are thrown on the scrap heap after caring for years ( caring for an ill relative is not a good excuse for a gap in the CV according to the DWP at job seekers and then they try and get you to work in a care setting because of your experience !!!!!!)

and the poverty that can come with it.

I remember phoning up the social work in tears, caring I said it is like setting yourself and your dreams on fire to keep the person you love warm.
I have managed to keep my relationship with my husband but the job went

So I hear you and I hope you get emotional support, having listened to many carers stories as well as my own experience,
you need your feelings to be heard
Can you get help from the Carers Trust they have a phone number and at one point I phoned The Samaritians
(honestly it was so helpful to pour my heart out to a stranger at 2 am)

Because of my husband's diagnosis, I am back trying to get help for dad to stay in his flat.
"We may be able to offer Home Care, 3 x 15 minute visits and we don't do shopping" So nothing has changed

I am glad that you are feeling emotions, grieving is a complicated process and a traumatic caring experience does not help.

This long ramble it to say, I hear you and you are not alone.

All the best

Gosh, it really does sound like the system hasn't changed one bit!
Honestly, I said from the beginning that I wasn't going to quit my job. This may come across quite blunt, but I knew that Gran's care wasn't going to span years- her deterioration was too rapid. So, I figured, I'm mid-twenties and just kicking off my career- if i quit now, I'll never get back to where I was (as you quite accurately describe above).
I'm 50/50 on the system, as it stands- for us, we were really lucky to get CHC really quickly via the OT. I know the struggle for this is huge for other people. However, the carers themselves and the designated times were what really disappointed me. Some serious re-training is needed, particularly for neurological conditions- as always, though, who's going to fund it? The shopping thing that you've mentioned above is one of the things that really gripes me so I understand your frustration there. Having said that, buying things from the supermarket was about the only thing left I could do for Gran in the end, so it's not all bad

It's good that there was a teaching example from your bad experience. We had that, too. After Gran passed, her OT called me to express condolences and said that the hospice staff were going to be re-trained on how to care for people with MND, given the appalling treatment of Gran, so that's something.

My counsellor said she would get in touch when things are a little more back to normal, after covid- it's nice to have that to 'look forward to' (if that's the right phrase to use). I'm glad you felt the Samaritans were of help to you- I've reached out to them myself in the past- it's good just to get your feelings out there.

On the note of 'getting feelings out', I'm always available for a chat, should you (or anyone else) need Talking to a counsellor is great, but talking to someone who's experienced more-or-less the exact thing(s) you have are invaluable

Lovely to talk to you DeeH! xx

[Broostine93]

I often wonder how you're doing Chrissie.

Can you do video counselling?

Love Ellie.

Hi Ellie,

It's lovely to hear from you! Generally, been doing okay- it's quite funny; when I was looking after Gran, I used to look up and go 'I wish I could just have one day in the house' and then we were all told to stay inside for months! Prompted me to look up again and go 'are you kidding me?' haha!

I've contemplated online/video counselling since the pandemic hit, but I really feel 'normal' for the situation now. My old therapist used to say that I was 'psychology-minded' and that I could find the answers to everything I was feeling (i.e. why and how to deal with them). I think I just miss being part of this MND community- not many other people 'out there' who understand MND and it's effects.

I hope you're as well as can be. Sending love! xx