How many of you have a carer?(who are level 1)

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At my last care act assessment in May 2021 my (s)daughter agreed to have a carer's assessment thus making her my 'official carer'.
I'm thinking this might be unusual for those who are level 1.

I've never had a carer (other than parents but that's not what this thread is about).

You have said before you require your daughter to do your shopping for you. What is the reason for requiring support with your shopping? (Not judging or anything, just curious).

Also I think I remember you saying in another thread you had a bad fall a few months back which required assistance for getting into the bath.

Do you have co-morbids as well? Sometimes they can hold you back. Like I think I'll be better at making and keeping friends if I didn't have ADHD and anxiety as well as Asperger's, as other level 1 Aspies I know of seem to have a normal social life.

Good for her. This just might mean that she’ll get money to take care of you.

I’m thinking, Firemonkey, that, perhaps, you have a carer for more physical reasons than mental reasons. Correct me if I’m wrong.

Shopping= chronic lower back pain. Was increasingly struggling to get round supermarket When Covid started. I did shopping list and she did shopping for me.

Had fall last October. Told pain was psychological by paramedics and GP. S/dau had major hassle arranging transport for me to be x rayed . Xray done Dec 3. Fractured neck of femur. Admitted. Had community acquired pneumonia when admitted. Partial hip op on 5th December. Then poorly- needed oxygen for several days. Upper BP mainly in 90 when usually between 120-130. Found out also I had vitamin d deficiency and atrial fibrillation. Got medically better. Transferred to inpatient rehab. Did well enough to come home just after the New year despite having been dxed with Covid 6 days before.

Started off with reenablement team coming in 3 x a day.Made big effort to do as much for myself as I could. Eventually they were cancelled as they weren't doing anything. Nowadays using bath lift that was fitted, in-between having strip washes.

Received of letter sent from hospital doctor to GP.f. FRAX score 11%ten year risk of major osteoporotic fracture and 2.5 % 10 yearrisk of hip fracture.

History of schizophrenia and vit D deficiency makes me high risk for secondary osteoporosis. Waiting for appointment to have bone density scan.

Other comorbid= probable dyspraxia . Found out I had scoliosis a few weeks before the fall. Reckoned to have been there at latest from my teens-or earlier.

Currently getting around my flat using a Zimmer frame/walker.

Sounds to me like it isn't your ASD alone that is the reason you need a carer.

I'm supposedly in remission with some breakthrough psychosis re the schizophrenia.Functional hallucinations and non bizarre paranoia. I have the common adaptive functioning <IQ. .EF - organising and planning difficulties. Have severe social anxiety. Very prone to catastrophising.

Send to high range IQ rarity values: Verbal 159(99.9958) numerical 135(99.01846) spatial 126( 94.52007). Rarity value with tests created by a psychometrician = 151. Some days I'm on the brink of brilliance.Other days struggling to reach mediocrity. Have always been erratic.


Things raised at last assessment: poor peripheral vision,clumsiness, poor practical/technical skills/mobility issues and spatial perception

From what you wrote, it’s mostly physical, rather than mental.

Sometimes my wife thinks she is my Care-er.

My functioning was a lot different before I met her.
If she left me or died it would my life would have to change drastically.

Funny how hard it is for medical people to say "I don't know" instead they blame the patient.

Neurology is very complicated - and pain has to to with neurology.

Are you in UK with socialized medicine?

In England.

I am in the U.S. - My dad has cronic pain - they are all scared of being sued here if they give too much pain killer because it may cause addiction and then the politicians will come down on them. Something like that may be happening in the UK too.
I was there when a doctor told my father there was "no organic cause" for his pain. This guy was a expert on bowels. How the hell would he know if there was a back problem causing nerve pain which was perceived to be in the gut or bowels: answer he wouldn't. What he really knew was "I cannot find anything obvious that I know how to fix" but what he said was "there is no organic cause". He really just didn't to admit there might be something organic that he couldn't see or didn't know about.

I heard a speaker on doing elder-care - going to the doctor with your dad or mom. She said if your doctor says "you are old these things happen" then get another doctor. If your doctor says "it is all in your head" head another doctor.

But it may not be that easy in UK.

Some of the politicians in the U.S. think we need the same socialized medicine and it will make things better for everyone.
I think the government does a rotten job with the stuff they are in charge of now and I don't want them in charge of more.

But I could be wrong, I often am.

The physical problems have increased quite a lot in the last 15 months or so.She is also informed about anything re my health ,housing association.gas and electric etc Work permitting she attends any appointments that I have. It's now more physical, yes, but that wasn't always the case.

If I was not married for the last 40 years, I would definitely need a lot of support. My spouse provides that for me, but without his help, I would definitely be lost and in need of assistance. He provides the structure, the support to initiate tasks and follow them through, determines our schedule, manages all of our finances, initiates all shopping, home maintenance chores, car care from purchases through tune ups and repairs, the list of support is endless. Truly I would need a caretaker if life events had not provided one for me. I was diagnosed as level 1 but I suspect I would easily have fallen into level 2 if I had not already been with him ( or he with me) for 38 years at the time of my diagnosis.
No shame in needing help or asking for it.. we all do the best we can with what life has given us (or not given us). Best wishes.

I think I would be able to manage living on my own, but I may need a little support at first with managing my finances, not because of ASD really but because of ADHD. I find it difficult keeping on track of things even if I keep a diary. My routine schedule is often very random and remembering to do things doesn't always come naturally to me.

Otherwise I'm still level 1 ASD, as I have good communication skills so if I ever do get stuck I know how to ask for support and to express how I'm feeling, like anxiety. But since the pandemic I have lost my confidence in going out on my own, although I can do it if I had to but I do often put it off, like cancel appointments, because I can't always face being out in public. It's such a mental effort to make sure I look well-groomed, decide what to wear according to the weather, make sure I haven't forgotten my keys or money, and put on my emotionless robot mask to look normal in public. When you're on your own in public it's taboo to show any emotion unless you're interacting with someone. You've got to be calm and cool at all times, which can be difficult when you have ADHD and can't always stand still in queues or can't always ignore the noise of crying babies or loud motorcycles. So to avoid all that, it's easier to stay indoors.

Thank you .From when my wife died in 2005 to finally agreeing to move in 2017 it was a gradual slide into more and more self neglect. Not that I noticed at the time. It took something my care coordinator here said on one of her early visits, to give me my depot, that switched the light on. My (s) daughter had contacted mental health services here before I moved. She's worked for over 25 years in the caring profession - autism/dementia/mentally ill/physically disabled etc. She is currently local branch manager of a home care agency. Truth is without her support I'd struggle to maintain an acceptable level of independence. Apart from money management, which I'm reasonably good at ,i my situation is very similar to yours.

I apologize that I don't understand you - what does "(s) daughter" mean?