What an amazing community! I hope someone might have some logical options to help / advise.
I’m an only child living abroad and struggling to support my parents during lockdown. My dad had a TBI about 7 years ago after a fall. At the time he seemed to recover well, but was never really the same. The injury impacted his personality (loss of empathy, affection and made him anxious and stubborn), lost taste and smell senses, short term memory loss, not very confident with his speech.
There was a lot of denial around his accident, he never wanted help, hence why we as a family haven’t been to headway before with him. He went back to work, although he held down his old job, I believe it was more out of sympathy and his company didn’t have the heart to let him go. Plus he always passed fit to work/ drive tests.
He retired early last year and since then it’s been hugely downhill. He’s so slow now he’s even been edged out of his golf circle for slow play, left on a night out in Manchester by his “friends”, he rarely speaks and wants to do nothing. His mood is low and finally after literally zero support since his accident he’s on anti depressants and seeing a counsellor - but he’s confused the therapist many times and as my mum isn’t really allowed to go in and advocate on his behalf, it’s been difficult for the therapist to really work with him.
My mum is essentially married to a different man, he doesn’t speak all day, doesn’t do anything to contribute at home, just sits. He’s shown no love or kindness to my mum since the accident happened. He’s snappy and hard to negotiate with. He won’t eat unless reminded and is compelled to drink every day.
I didn’t know the severity of where we were at now, my mum still protecting me at 37 and feeling I can’t help as I live in the Middle East.
Prior to lockdown the only getting out of the house and routine dad had, was going to the pub daily.
Being stuck at home is taking its toll. He’s hardly moving, legs are seizing up, fallen, can’t get in bed. Staring at tv, watching same this over and over, not eating, not taking medication, had toilet accidents as he can’t seem to get there in time. I Skype everyday and he can hardly string 2-3 words together. I can see the tension in my mum (and god bless her has got shingles last week and is in agony), she’s never really viewed herself as his carer.
Scarily he took the car keys and left today. He couldn’t really say where he went, said he sat in a car park, went shopping, returned empty handed, we thought he’d gone to buy cigarettes as he was secretly smoking too, but he was so incoherent in his story. And still in total denial that anything is going on with him. He maintains he’s “feeling fine” although he did say he felt cooped up and wanted to just get out. He’s not driven for months. Mum didn’t really know how to respond.
So..... where next, especially during lockdown, considering mum has been able to get very little support from the system before this (he was declared “fit to work” just 5 weeks ago because he can pass a cognitive test. But he is not ok. The 10 mins doctor appointment where he adamantly declares he’s fine, my mum doesn’t seem to be able to advocate enough and get heard (although I think my dad does always manage to “perform” when absolutely necessary).
It seems like there is A LOT going on, a bit of depression, a bit of confusion, a bit of cognitive memory stuff, a bit of physical, a bit of the personality part - obviously scary that he’s just taking off and his mental health is quite obviously in limbo.
Where can my mum seek advice? What kind of specialist should she track down? What assessments should he be having that will identify what is going on. As his family is heartbreaking to see him being able to convince doctors he doesn’t need help and my mum not being vocal / heard / supported.
I know it’s only medical emergency at the moment in clinics. Is there anything available on telehealth? Is there a private specialist that we can consult? Go directly to?
Any ideas on how I can support my mum and dad at this time? Is there something my mum should be doing that she isn’t? She’s at breaking point - she cared for her mum and dad as an only child through sickness and dementia. And I think there is only so much one person can take, if she could leave, a bit of me thinks she would (no judgment please she endures a lot of harsh words from my dad)
Oooh wow such a long tale. I thank you for reading. Even just saying all this out loud has really helped.
I’m so grateful. Truly.
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Mydadsdaughter
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I would recommend that you phone the Headway helpline on 0808 800 2244. They have a wealth of experience and are amazingly compassionate and supportive. All of the helpline staff that I have spoken to are great, but if you are able to speak to Vicky, she is a nurse and is very knowledgeable in related areas. I believe that she is on duty on Wednesdays (and maybe Tuesdays.)
I have had such a lot of help and support from this helpline, I honestly don't know where I would be without them.
Apart from advice, they are happy to offer general support or to just have a chat. It is so good not to feel alone with your problems. Often just knowing that others have experienced similar things is such a comfort.
These are all classic issues of brain injury but, even in normal times, aftercare is extremely thin on the ground and for those of us who've managed to get ongoing treatment it's usually a long wait before appointments come through. Naturally, right now, it's virus patients and emergencies which take precedence.
My GP referred me back to my brilliant neuro consultant but it was a year before he could see me and, after three sessions, he retired anyway. His replacement simply ticks boxes and sends me on my way for another 12 months.
Maybe ask your mum to phone the Headway helpline for some extra support and advice. Although the present crisis and possible re- tightening of sanctions are limiting possibilities, the Headway team are still advising members to contact the helpline if they're feeling overwhelmed.
The tel. no is 0808 800 2244 (freephone - office hours).
Hope this helps a little m'dear in what must be a really anxious time for you. Cat x
This is quite common where the NHS is what I would call negligent about the care and support of someone with a brain injury, so they don't get it, and their families suffer as well as a result.
Maybe we should try to make some kind of information campaign about it ?
Hello there. It must be so hard for you being so far away, especially during lockdown. The advice Marnie and Cat have given you is spot on. Headway are brilliant and, as a start, your very first conversation with their compassionate and expert team will in itself be a huge help. If there were a chance that Sue’s neuropsychologist could help that would be fabulous.
Hi, really feel for your desperation. Time's are difficult due to the virus. GP's are still dealing with the nitty gritty of health issues. Your mum maybe needs to get an appointment for herself. She will be able to pour her heart out. She is in some ways, in greater need. As a carer she needs to prioritise herself.
If she can get herself heard, that should lead on to your dad getting help. You say he has shingles, in the older person, this is a serious illness. It is like being wrapped in a bed of nails. He needs on top of his physical health needs, needs crisis intervention from the neuro specialist. In the current situation despite the virus, crisis management is more important than ever. If he is going out to who knows where, then he is at risk of the virus, and transmission to others, including your mum.
Maybe because of my background, I am reading more into the story, yes I have a brain injury, but I am a former MH nurse.
It might require that at least as respite, that he is admitted to a rehab service. This would mean total separation from your mum under current guidelines.
It would be better if he is admitted voluntarily, but it might require under action via the Mental Health Act, because his behaviour is a risk to himself and to others.
I'm sorry, under different circumstances, I would be suggesting a less authoritative approach. But we are not living with that luxury at the moment.
I don't say any of this with a light heart. It sounds like your dad is unlikely to be compliant with medication, or isolation.
The first step is probably the hardest, and that is your mum admitting to the GP that she cannot cope. It is that blunt. And I know it is the last thing your mum would want to admit.
I would in different times say like others, Headway, but I get the sense that the situation has moved beyond easy choices.
I'm sorry, feel free to blast me, but you have his mental health, his cognitive understanding, his physical health, your mum's mental health, physical health, and potentially very high risk behaviour.
Sorry to hear about your dad. If your mum can get him to eat, she could try the brain diet suggested in the book Nourish Your Noggin by Tina M Sullivan. (That book is on amazon if they are still able to deliver). It's full or recipes to heal the brain based on medically orientated diet advice from Dr Diane, who wrote a book on post concussion syndrome and brain injury. She is a neuor-psycholofist and had an accident herself so really knows about the issues. Her book on PCS is brilliant too but so scientific. I found chapters 3 and 4 were a classic description of my mum after her head injury. Until you can get the book, here are a few pointers - lower the sugar content as it makes inflammation worse, go for a mediteranean diet, thai curries are an option, use herbs and spices in any dishes like turmeric, cinnamon (great as a sweetener), black pepper, ginger. You can put turmeric and ginger in a banana smoothie (I think Sullivan advises non-dairy milk). I put it in soups, on vegetables roasting in the oven, and on baked apples. Clipper does a turmeric and orange tea which is very nice. Your mum might enjoy reading it if she likes cooking. Avocados were also listed as some sort of superfood.
Hope this helps
J
My heart goes out to you and yours is an almost mirror situation to my daughter who lives in Dubai. Her dad's reaction to his severe brain injury is denial and rejection of all the therapy and help I secured for him. He discharged himself from the nursing home and as he was deemed to have mental capacity there was nothing anyone could do to prevent it. I crumpled, could take no more and left him. I am suffering from depression and having therapy.
I agree with the other replies seek help from Headway, they will be excellent support for your mum. Get your mum a GP phone appointment, she needs help. I'm pleased you contact her everyday, she needs you more then ever. Hope this helps.
So finally we got the diagnosis of vascular dementia for my dad - but that was also an extended battle. Apparently it goes hand in hand with a TBI after some time. He's deteriorated a lot since then, and had lots of falls - broken back, broken hip and broken femur. Literally don't know an unluckier soul! Mum is his full time carer and just had support from a Dementia Doula (WHO IS AMAZING) for a few hours of respite a week. It's not fun, but it is what it is.
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