OH doesn't. Either he doesn't understand or he's hiding it to protect meBig hugs. Yes, everything about this journey is hard, and seems and feels very unfair. I think often our anger is diverted sobbing. I also think that quite often when my OH is angry/impatient etc with me that it’s not really me but himself (the dementia) that he’s angry/impatient with. And strangely enough the times that have broken my heart the most are when HE has broken down and just sobbed.
ThanksYour words sum it up so well @Alisongs ……and they can only be written by someone who has been there and done it…..which the policy makers haven’t.
If you download the NHS app you can email the surgery directly. I use it regularly as I can never get through on the phone/ cant hear them anywayI wish. Never available
I don't get that option on my NHS account.If you download the NHS app you can email the surgery directly. I use it regularly as I can never get through on the phone/ cant hear them anyway
Yes you shouldI don't get that option on my NHS account.
Instead I use the email address on the surgery website.
Please read this again
Sunday 7 July 2024
5.30am. Hospital put my husband on the phone last night. I find it weird as he seems so disoriented without the visual body language cues. Then he can't find the right words, although he didn't seem to realise. I did say he's on a path to discharge, and the meeting would be in a few days, so get well, don't get upset, and I'd see him then.
He wanted me to visit. I want to visit. I must not. He'd get upset at not going home with me and that would upset all his conditions and destabilise his blood sugar and he'd have to stay in longer.
Bad enough that the hospital seems determined to shunt him off to a nursing home, supposedly temporarily. Another change would be so counterproductive. And then another change if he is allowed home. It takes at least six weeks to get OH into a routine.
Lorazepam was prescribed in the hospital (not the surgery) last time. I have been told OH is not getting it this time round. It's a double concern, because it makes you sleep. If OH sleeps through a very high or ver low blood sugar episode, he could die. If I have misunderstood the point you are making, I'm sorryIf you download the NHS app you can email the surgery directly. I use it regularly as I can never get through on the phone/ cant hear them anyway
I access my NHS account via a browser not the app.Yes you should
do. Go back to the surgery and ask to be connected.
This is great @Dunroamin - I hope you are able to bring both your own story and your own clinical settings to the table in a professional manner to contribute to the discussions. You will have much to add. Do update us if appropriate.I am attending an NHS commissioning group at the end of the month and am hoping to be able to put my side of the story as both a person with alzheimers and someone with nearly 40 years as a frontline health professional in both acute and community settings. Should be interesting.
Hospital only considers diabetes. Insulin usually given twice daily by community nurses giving a set dose at random times am and pm. They do no other management. That would happen in a nursing home as well. My husband will be better off with his MumMy husband has late stage Parkinsons and has had dementia for 5-6 years. He did not have a gradual decline but woke up in the middle of one night and neither knew me, himself or his home. It is brutally hard there are many worse stories than mine on here.
I have done a best interests meeting and I guess failed it. My husband wanted to come home but they absolutely focus on the safety of the person.
You have to show how you would manage all aspects of their care including how you would mange if carers fail to arrive on a weekend etc.
Your husband's diabetes sounds very brittle, has anyone ever suggested an insulin pump or is that not suitable for him.
Does your husband hallucinate? Parkinsons drugs especially Dopamine agonists tend to cause hallucinations. They make it more difficult for the dementia drugs to work. It can take a long time to get the balance quite right. In early to moderate dementia PWD rarely think there is anything wrong with them that increases the risk they pose to themselves so safety in the house becomes an issue.
Good luck with your meeting, I suggest you make notes on how you can manage things and what emergency plans you can have in place.
Thank you ALL for your thoughts. Any plans we would make are frustrated by the hospital DOLS and social worker assessment. All support and information was frozen on readmittance. Because OH was only on week 4 of post hospital care plan and that has been frozen, the situation is: No contact from community nurses re injections and diabetic management, although I contacted them when OH was readmitted. No contact from support workers Hub, who were coming in 5 x day, although I contacted them when O H was readmitted. No contact at all from their boss, the area coordinator, since the start. Supposed to contact me week 2 to sort out the types of support available and suitable, going forward. Apparently had Covid, did not respond to support workers either, apparently another coordinator allocated. Heard nothing. Social worker supposed to be allocated week 4, to help with plans going forward. No contact, nothing, although Admiral Nurse was given a name. Adaptive Technology provision on hold awaiting Best Interests Meeting outcome. NHCC assessment no information, no reply frm Community Matron, probably frozen pending Best Interests Meeting outcome. Attendance Allowance forms cannot be completed, pending Best Interests Meeting outcome. No contact from Social Services at all about anything. Doctor failed callback appointment last Thursday. I have reenquired, no information yet. A mental health nurse rang last week to make appointment to see me Friday, if they came. I never saw them, and no way to contact.I’ve also resonated with the frustrations with physical health. Mum too having rare conditions. I have felt traumatised by the way I was DIYsmissed throughout our journey…..when on each occasion the evidence showed I was right…..but of course no one cares or looks back to learn apart from the family.
There is an attitude I think that when you have dementia and old age ( which Bill doesnr have yet!) good medical care ( certainly in the way of prevention rather than reaction) is not important….But as we know dementia can last a long time and prevention of medical complexities both saves money and stress on services And preserves quality of life which for me was of the upmost importance.
you almost need a specialist in each GP surgery whose GP it is to oversee these complex patients. Who has the time to LISTEN to the families and the POWER to liaise with other medical and social care professionals As well as make appropriate prescribing decisions. But that would require a massive CHANGE of MINDSET and would COST.
@Alisongs …..try to take some space (if you can ) to prepare for the meeting and plan how Bill’s best interests can be met.