I have to admit that I already hated the "friends" before your last post unless they were no more than drinking buddies (and even so…). We all know the refrain "with friends like that, who needs…."
Do you think they are at least normal human beings capable of feeling guilt or are they just total douches? Normal human beings could at least be recruited to help a bit in the future, but these guys don't sound like suitable candidates.
I hope you are aware that some of us are going to worry about what happens next after you have left, and this is going to prey on us until the next update.
some of us are going to worry about what happens next
I was out shopping and planned to visit a friend afterwards. Then I decided to go home and see what had happened with Mark and Robert while I was away from my PC.
Mark, A CVA does not need a 'bump on the head'to cause a bleed. I remember... A )18 yr old boy,very bright, studying for final exams, under stress from parents --> CVA, very fast treatment to relieve the pressure on the brain restored him to good health.
B) 34 yr old man who was building his own home. Extremely fit and strong and smart about his building. Found unconscious by neighbour...hospital...surgery to remove clot...totally disoriented after, kept getting out of bed and going through actions of laying bricks and shouting,"I need more bricks".Transferred to rehab section but did not regain former abilities in full.
Neither had received any external injury, just a POP of a blood vessel in the brain causing a clot which applied pressure to the blood flow in the brain which, in turn, caused part of the brain to die. Depending on which area of the brain is affected, the person's behaviour and mental abilities may change. (This was in the 60's.things are much better now )
Travel! Set out and head for pastures new[br] Life tastes the richer when you’ve road worn feet.[br]Ibn Battuta[br]
After my mother brike her skull 7 times and my father spent months and a fortune ti help her recover she was deemed ok enough to go shoppung on her own - and driving in her own. She was abusive about my father - of course since he was the knly ine takjng care of her. She met 'friends' when shopping and drinking cafe. One of her 'friends' met my father and told him that basically he was a crap who was a contril freak of my mother. I am still amazed at how civil my father had answered. We dont need such friends. Nobody deserves such friends. I cannot say more about your brother Mark. Good luck.
Questa, " A CVA does not need a 'bump on the head to cause a bleed." - no, but it can. My point was, there is no sign of external injury because if there was I would have agitated for a scan asap. But as there isn't I have no leverage and must wait for them to do one, if they feel it necessary, and if they don't then in any case I will 'talk' to them about using this as an investigating tool to be more certain of a diagnosis.
With his friends I decided I would never contact them, but if they contacted me, which can't be in a phone call because of the language thing but via whatsapp messages which I translate, then I will keep my responses to a factual minimum. They were just drinking buddies and rumour suggests the nasty one is a misogynist (which I believe) and has recently assaulted his girlfriend - which I remain neutral on because even though I could believe it to be possible, a rumour isn't enough for me to commit an opinion to.
What about the say 'hit your wife everyday. If you dont know why she does !'.
I remember meering Rose and Ducar (you cant invent such names) who told us at their wedding Ducar slapped her wife. She was stunned and said what was that for ? He answered that it was what he would do if she did something bad. ... They married between the wars and spent all their lives together. Other times...
Post by mickthecactus on Feb 23, 2020 10:39:02 GMT
I was thinking of this whilst walking the dog this morning.
Rob is still able to translate so there must be a brain in there. Being an optimist do you think that 6 months off booze and drugs plus a proper diet and care that he might begin to get back towards normal?
Mick, I have seen progress whilst I've been here which I'll come to in a moment. His brain is still working and Questa or someone with more medical knowledge than me can fill in better. But certain things mirror Alzheimer's in that his memories of more than about 20 years ago are pretty good and in talking to him there are things he brings up about our past that even I had forgotten. I think his language skill is so ingrained as to be one of the last things he'd lose and probably other things like the anomaly of having now no sense of direction, where he is or where he has just been, and yet invariably wherever we are in Granada he correctly identifies the way to his apartment and the one he shared with his ex. He can even describe things en-route like shops or landmarks.
But with the translation thing a typical conversation would go as follows with a third person. He translates what I am saying - Me - "We went to the social services today......." Spanish from Rob They said we - and then he interrupts, "Who said?" The social services When was this? Today They said we need to go.... Who? me and you? Yes. Where? I'm coming to that. They said we need to go.... Who said? The social services. Go where? To your doctor. "Why?" Rob, just translate and you'll get your answers, be patient. The social services said we have to go to your doctor tomorrow. How do you know that? Know what particularly? That they said it. We went to see them today. Did we? Yes, we did. Why?.................
Even optimistically I cannot see him recovering more than 20 - 30% from where was when I first arrived. I hope to be proven wrong but then I am a pessimist naturally. My definition of a pessimist is a realist with experience.
I have been trying to provoke in him the brain version of muscle memory. To repeat things with him and go round in circles again and again so he instinctively gives and knows the right answer. I need for him to instinctively remember the Restraining Order and the conditions of it. I need him to remember always why it came about and that is was his alcohol abuse that put him in the situation he is in. This is for his own protection because if he breaks it he will go to prison and if he continues or starts to drinks seriously again he will never recover at all.
There are a couple of other things I am trying to 'train' him on as well and I'll expand on that maybe later but probably tomorrow. Initially I had wondered with me being here, monitoring him, feeding him, giving vitamins, nutrients and all those sorts of things, may have kick started his brain a bit but I realised after a week or so that there was just minimal improvement and at times seemingly none at all. Hence I had a think about it and decided I'd try to promote this muscle memory thing with his brain because at worst it is harmless (apart from me having to spend a few hours a day doing it every day which is small price to pay if there is improvement) and at best, it does help and to concentrate on the most important information he must retain. Just a couple of things over and over again to keep him out of trouble until, with luck, professional medical help may produce results.
Mark, it sounds like you’ve done a tremendous job of putting things in order. That’s all good for your brother. I’m guessing the good part for you will have been the fact that you’ve had the opportunity to see the situation for what it is and you’ve done your best to get help for Rob. If the situation improves you’ll be happily surprised. If it doesn’t, you'll know you gave it your best shot.
Aaaannnd...... breathe out........ and iinnnnn slowly........... aaaannnd out....
Dropped him off at the shelter tonight for the last time. From 8am this morning, through a trip to the coast for breakfast and until 8.30pm tonight, the same series of questions over and over again.
In the last few days there is a development in his answers/thinking that I was initially expecting as I understand it is a symptom of dementia in general - that is until a few days ago, if he asked a question and I answered it, it was like he'd asked it for the first time. Now he often tries and deflects from showing he doesn't know by covering up in some way like he was asking just for confirmation. E.g. He'll ask me if our parents are dead. I'll reply yes. He'll say he knows. I ask why did he ask if he knows? He'll say I just wanted to make sure I was right. Whereas before he'd say, Are they? and then sometimes pause and say, oh yes, they are.
Or, I wonder what our parents are thinking about how I am. They're dead. Yes I know but I wonder what they're thinking. Rob, they .... are.... dead. They're not thinking anything. You never know. Rob, unless they are like Jesus Christ, they are still dead and don't have any thoughts. You don't understand.... Understand what? Nothing. Doesn't matter.
However, for anyone of a medical bent - Anomia - no sign. Apraxia - no sign. Agnosia - no sign. Amnesia - (Retrograde and Anterograde) - yep, plenty. Aphasia - no sign.
Mark, again, you should be awarded superhero status.
Short term memory is always the first thing to go when a cognitive decline of any sort starts. This is because the 'binding' process of creating new/short term memory patterns is greatly affected by progressive neuronal loss. Learned/long term memory and language is retained differently and by a different part of the brain/different process.
That is why many cognitively declining people, early in the decline, can seem quite sharp at times with recall of old memories from the past and can continue to communicate somewhat effectively too. A very astute Neurologist also told me that cognitively declining people also know the decline has started long before anyone else does and work frantically to conceal and compensate for it. So it's common to see these folks struggling with more stress, anxiety and disorganization for a while before the cat is out of the bag with their loved ones.
Also TBI is being viewed much differently by the medical community nowadays too. We've seen that contact sports athletes and others who may receive impacts to their heads over a period of time are at increased risk and are being screened. Domestic violence survivors are also being screened for TBI here as well and a staggering number of them are showing TBI after being victims of abuse, even after many years have passed. This is anecdotal but when people have substance abuse issues, it's not uncommon for them to have falls, and to hit their heads regularly without anyone knowing/or an injury being seen from the outside.
I can only wait for him to see and be examined by the drink/drug clinic doctor who would be more of a specialist in this sort of thing and see if a brain scan of one sort or anther is followed up on.
One thing I mentioned only in passing is his hygiene. This has caused me problems every day. Whenever he comes to where I'm staying, in an apartment, and which had been every day, he leaves a trail of shitty fingerprints. On the wall, even on a low ceiling and especially the wall behind the toilet where he leans to have a piss. When we eat he insists on washing the pots. This will clean his hands to a certain extent even though I get him to every time he goes to the toilet. However all the pots he washes I then put in the dishwasher to do them on really hot and properly. Also when I come back after dropping him off I have to disinfect all the surfaces he may have touched.
A couple of times he's gone in the fridge for something and I end up chucking away most of what is in there. I've had to put a bin liner on the car seat and plastic sheet on the sofa. The TV remote is something I will not touch without a full body suit. He even gets shit on the toilet roll and he has his, whereas anything for me, I hide out the way. The towel he uses to shower every day always has marks on it where he's not showered properly. We have an 80 litre hot water tank and he will stay in there until it is empty, yet still fails to clean himself completely. And no, I'm not doing it for him. I did for my father, that was enough.
The amount of underwear of his I have thrown away is more or less one every day because he knows he, what he calls, "leaks" and will pad the underpants out with toilet paper. This dries and sticks to the material and more than once I caught him trying to pick it off. Impossible, so I tell him to put the new pair on and I'll wash the other - but chuck it away. Primark does good ones for a cheap price, in case anyone needs to know. One pain is that he has always taken a long time to go to the toilet. This is exaggerated even further now and when we are out it is very inconvenient. I had thought we may be able to go places every day, see things etc, no matter his mental state, but this is not practical. You can guarantee that not only just after we have left somewhere, he'll say he needs to go - this is all too reminiscent of my kids doing the same, but a pee takes ten to fifteen minutes and a sit down job can be half an hour.
His eating, I may have mentioned as well, but he has always eaten slowly and likes to read the paper, which I've banned him doing as it delays him even further. I take a normal amount of time to drink a coffee and eat a couple of slices of toast. He will take an hour now even without reading. When I have finished he'll always say, "My! You were hungry!" As though I'd rushed it. Certainly we have not really been in a rush to do anything and it generally hasn't been too inconvenient, but all the same, I have to just sit there waiting knowing it will take even more time because he will probably want to go to the toilet as well. Always as well there are a number of things I will not say to him otherwise it will set him off in a loop of checking. If I ask if he has his phone, he'll have to check all his possessions and pockets several times and even when he finds it, he'll keep looking just, he says, to check what he has. I don't ask him any more if he has something with him. If he has, he has, if not then not as he'll strip everything out no matter where we are, cafe, street, anywhere.
Another small matter is when he meets me in a morning it is a bit of a lottery as to what he has decided to bring with him. Sometimes just his bum bag/fanny pack I think some call it. Other times his large plastic bag of food, his day pack, his plastic bag of clothes and his full on rucksack. I have a principle that no matter what he does bring, I won't carry anything for him. So when he has to do the checking thing, it's no use handing stuff to me to hold. I do though no matter how much he does have with him, carry it all when we go up more than a few steps. There are fifty to my apartment and I always relive him of it all to go up and down there.
A lot of times when looking into the types of problems he has or hasn't and when others have not experienced it (now twice for me, father and brother) you can see a list of symptoms with a fairly plain description of something - like 'loses short term memory'. Becomes incontinent etc etc. Insecure, paranoid, obsessive, prone to hallucinations, lose motor control, difficulties with language, mood swings.... et al. I hope over the last couple of weeks or so the actual impact and reality of the bland lists comes through with what I have related for those inexperienced in this darkest of afflictions. (Not so dark but the phrase sounded good in my head). I apologise if there has been a certain amount of repetition in my wanderings.
To more or less round off I'm going to post a conversation we had. It is 39 minutes long and if you listen to all of it, guessing the average age of all of us on here and how quickly time is passing for us, you'll never get that time back. Maybe if interested you dip into it here and there as the sound is not what it could be. You can make out two voices, mine quite loud and his fainter. For those who have had friends/relatives in this state it will be all too familiar and maybe not worth experiencing again.
It is me trying to promote his muscle/brain memory and word association so that he comes up automatically with the right answers. Also to explore what he does remember and the logic and reasoning behind the situation. You remember the toy some had and it was advertised for many years, a spirograph? It is the verbal version of that. Spiralling and circular conversation with me repeating his answers back to him often. This is the second part because we had already gone all the way through this once that morning, then he went for a pee and I started again. The questions I'm asking may well start with something not specific, a little general or cryptic to see what question may trigger the memory as they get simpler.
As a key, the bum bag/fanny pack was mentioned a number of time, his ex is called Carmen and 'Calle Arandas' is the homeless shelter.
I'll translate if you can't make somethings out. There is no video to see, it's just the photograph and sound.
Oh Mark, you don't have to apologise for anything. You came into this with set aims and in spite of finding your brother seriously ill mentally, you have achieved your aims. The fact that in getting assessed, accomodation, medical appointments,and entry to a drying out place, all in under a week, AND in a language not your own is almost a miracle in itself.
You sometimes write about bamboozling officials when you are travelling. This last fortnight has shown that your skills have not been practised in vain. You are one of those people who Make Things Happen. Good wishes to you both and send updates.
Travel! Set out and head for pastures new[br] Life tastes the richer when you’ve road worn feet.[br]Ibn Battuta[br]
I shall skip across the compliments and mention that his shit thing is unawareness more than anything. I expect that once in proper care the solution to this will be a byproduct of his treatment for anything/everything else. Apart from all the other stuff arranged, or in the process of, he also will seek the advice of a lawyer to initiate uncomplicating his access to his kids and the refusing to leave tenant in his apartment thing.
Mick, it's quite painful and repetitive, maybe be doing something else at the same time to keep you occupied.
On second thoughts, just let me read those compliments again.
Once my mother started wearing full nappies instead of the smaller leakage pads, it solved a lot of problems when we were out. At the nursing home, I would put her on the toilet when I visited and wait until it dropped. Sometimes 5 minutes, sometimes half an hour. The orderlies were thankful to me for that.
When my mother hit her head she had more memoey except very longterm could not recognize people didnt wash anymore etc. A lot came back with help from psychologists. It was a trauma not AVC and i dont know hiw it can relate to your brother but we never thought she woukd gain back so much. However she was never herself anymore.
I bet you would Mark. What you are going through is a real nightmare which many people, me included, would find practically impossible to cope with. I can only stand by and praise you for your determination and skill at dealing with bureauocracy, and getting things done.
Man is not lost, only temporarily uncertain of his position
I had a final meeting/get together with his ex this afternoon to run through where we've got to and what should come up next. She has been quite involved no matter it was her who had to kick him out. Got a free lunch as well, though not really free after what I've done I suppose. We are friendly and I don't blame her at all - plus they have three really cute kids who though she is dark haired, dark eyed Spanish, have fair hair and blue/green eyes like we do. The girls will melt many a heart for sure. The lad is also good looking but had to suffer from me giving some 'advice' as to his school attitude as I was asked to do so by the ex. He's just going through the normal hormone thing and realising girls are actually quite attractive.
I basically told him that nobody can force him to work hard at school. Not me, his mother or the school. It is up to him completely. If he doesn't work harder then there is nothing we can do about it other than hope he can buy that motorbike he wants (he's fourteen, so later) and take that girl out he fancies on it when all the job he can get is a public toilet attendant. Also, don't expect like many Spanish men to be still living at home when you are thirty five and have no job. Your mother will kick you out.
Anyone in authority has my contact details as well as hers and my last task this afternoon was to email the homeless shelter, the social services and the drink/drug clinic with my 'suggestions' as to what should happen next and happen in short order otherwise they will pay in one way or another for their delay because Rob will need much more care and for longer and longer as time goes on with no treatment.
Is this the end for now? Doubt it, but it's gone quiet for a bit and I'm buggering about doing nothing constructive at all. My brain needs a rest. I called in Lidl for some milk and bread. Didn't get any but came out with a lovely cruet set, a multi-purpose bike spanner, a brush to clean Venetian blinds, a yoga mat and small indoor stone fountain with a high quality silent pump and 4 long-lasting LEDs with warm white light.
Mark, FWIW, bodily functions such as voiding the bladder/bowels are regulated by the frontal lobe.
There is actually an area that is referred to as the "brain-voiding control network" which regulates those body elimination functions. Incontinence often co-exists with brain trauma/CD for this reason.
Incontinence is also an issue with CD because the afflicted person can have difficulty recognizing the signs of urgency to eliminate, or can have brain signals that completely fail to alert them of urgency and/or can have difficulty remembering how to get to the toilet or how to remove clothes. A relative of mine had this issue because they completely forgot how to move a zipper on their trousers up and down. Even after being shown several times, they would forget. These are things that are like second nature to us so it's mind boggling when we witness it happening to others.
Because of the shitty American medical system, I had to do a lot of self-educating on these issues, reading, research, talking to medical professionals so I understood it all. I know more about this stuff than I can ever want to. If there was a way to UN-know it, I'd be happier!
You've done so much and anyone would be lucky to have you as a brother trying to advocate for them.