My mum's vascular dementia
- Thread starter malcolmc
- Start date
Sorry for the delay in letting you know an update. The assessment went pretty much as expected, the social worker didn't turn up so it was just the Psychiatric Nurse assessor and the assessment unit Manager and my partner and I. The assessor went through the checklist and then confirmed that she has not reached the bar for the NHS Continuing funding. I found the person who carried out the assessment was cold and clinical to the point of rudeness as when I disputed some of the points he raised that he felt mum was capable of, he resorted to telling me that he assessed people every day and whilst I may think mum was bad, compared to how she used to be, it was nowhere near as bad as she was going to get and then proceeded to give me a very graphic description of all the possible outcomes. Fortunately I had already researched mixed dementia to the nth degree and nothing was of a great surprise but I felt the callous approach was uncalled for. I responded by saying that I was of the hope that mum would have passed before ever she got to that stage however a more sensitive person would have been very distraught at his grim prognosis. Surely some empathy wouldn't have been too much to ask!
I then had to attend another assessment meeting with the Social Worker. Fortunately she agreed with previous medical assessments that mum cannot go home. She is not oriented to time or place and the dysphasia is getting worse by the day therefore the belief is she needs to go into a residential home with an EMI unit even though she continues to expresses a desire to go home. I am told she cannot have a nursing home placement as she is not in need of nursing support yet although as her decline is very rapid she may end up needing intervention sooner rather than later which will unfortunately mean another move.
Our current challenge is to find a residential home, that is secure enough and is able to cope with mums dementia. It is amazing to me after having obtained a list of homes from the council that state they take dementia sufferers, to then find out they can't deal with mums' 'type' of dementia or as she can be reluctant to listen to requests to wear shoes or suitable clothing, won't take her because of her unwillingness to take instruction. I even had one home tell me they wouldn't take her as they only want privately funded patients. At the rates they charge I am amazed anyone can stay there long term. I find it all hugely disrespectful to these vulnerable people who need help through no fault of their own. I am sure that noone would choose to suffer from dementia. Sorry - off on my soap box again :-(
hi just yesterday we had the live in carer arrive she seems nice and very keen to help my mum in all aspects of every day living but like your mum mine has never been able to ask for help and is not liking the fact she has a stranger in the house i have taken the decision to take a back seat and see if her need for the carer will make her more excepting of her i understand the difficulty mum is in when she cant remember any thing short term and is convinced she is quite able to take care of herelf
Hello, you may have this in place. Try ' CANARYCARE.Co.UK this costs me £15.00 per month. So easy to install. No Broadband needed. You get 3 room sensors and a front door. Small untis that you tape with double sided tape. The UNIT is plugged into a socket that "speaks" to a satelite. You tune it to your I pad. computer, mobile phone. You can set room temps. received text alerts if there is no movement is detected, if the door opens when it is not supposed to. You can also get a reader that the carer swipes on arrival and departure. No cameras but brilliant and so much cheaper than the unit that Social Services suggested. Check out the website I cannot recommend this enough. You can have several friends etc on the text alerts so if you go on holiday then you can alert these people.
My question for help please. My mother is now saying that that my sister has telephoned her and told her that my mother killed my father this is not true and she is saying that people she knows are ill, heart attacks. She has Dementia, lives alone, her choice, What is this called, should I contact Health professionals to find out what is happening to her and what do they usually say
My question for help please. My mother is now saying that that my sister has telephoned her and told her that my mother killed my father this is not true and she is saying that people she knows are ill, heart attacks. She has Dementia, lives alone, her choice, What is this called, should I contact Health professionals to find out what is happening to her and what do they usually say
Thank you for the update re your CHC assessment. I'm really sorry to hear of the experience you had, I can't believe how callously you were treated during the assessment. You would expect a considerably more empathy from the professionals in such circumstances.
Personally, having spent hours reading through the 142 page "Framework" document, plus the Checklist and DMT documents, plus the many posts re CHC on here, and spoken to a few people in the medical profession, I've decided it would be a waste of time to even try for CHC at this point. Mum's condition may change and I might then review, but I think my energy and time are best spent elsewhere at the moment.
My heart goes out to you when I read your comment, "she is not oriented to time or place and the dysphasia is getting worse by the day". My mum is approaching that stage too (especially time and place, her dysphasia has improved a little), but not as bad at the moment as your mum sounds. I sincerely wish you well in finding a suitable RH for your mum. My wife and I have been taking cursory steps to look at a few RH's, knowing full well it's just a matter of time before this will become inevitable. Early days with the current short-term live-in carer suggest mum might be able to stay in her own home a bit longer, providing she will accept several care visits a day to help her, with preparing hot meals in particular.
@tiggertastic -Wow, I could have written that description of the situation with my mum in identical terms, and it's amazing to hear you are going through the start of a live-in carer experience with your mum at the same time as me with my mum! Is the live-in carer a short term thing for your mum or more long term?
After 4 days now with the the live-in carer it's very clear mum is unhappy with a stranger in the house and is simply tolerating her. Mum still can't remember the carer's name, despite her being there 24/7. Mum's not asking for help when she needs it, so the carer is having to "diplomatically" intervene (and doing a good job of it). The biggest issue is that mum thinks there is nothing wrong with her, so thinks she can still do everything herself. She claims, and is convinced, she has a "full, cooked meal of meat and two veg every night" when, in reality, she hasn't been able to operate the oven for about 2 years and struggles to open a can of soup to heat in the microwave.
I'm still hopeful that mum might be able to stay in her home a little longer (maybe with a more affordable 3-4 care visits a day) as I fear the trauma of a RH move will have a dire affect on her. So far, mum's done nothing to seriously look as though she would be unsafe if the 24/7 carer was not present, but I'll review that conclusion with the live-in carer next week, when I have to make a decision as to what to do once the live-in care stops after 2 weeks.
I did have a look at this system but decided 3 webcams would best suit the situation with monitoring my mum. I agree though, the CanaryCare is good system and may be suitable for others.
@Pestana - you'd probably be best to start a new topic/thread on that issue, if you haven't already - maybe the forum moderators on here can do that for you?. I would say if your sister lives on her own, there is no-one else to care for her, and you believe she may be suffering from dementia, that it would be wise to discuss your concerns with her GP or maybe local Adult Social Services.
well all went better than i could have wished with the carer as with your mum mine wasnt quite sure who she was and did we know that there was a girl living in the back room she has been with us for 3 days and tonight dropped the bombshell she is leaving on wed not even lasted a week she says it is to go back to mosambique to take care of her mother i suspect there i some thing else but she wont say o back to square one and pass me the wine
Noooooo! What happens after your mum's live-in carer leaves?
I'm just about to open a bottle of red. Haven't yet found a way of delivering it via broadband though, else I'd gladly share it with you
I'm just about to open a bottle of red. Haven't yet found a way of delivering it via broadband though, else I'd gladly share it with you
Noooooo! What happens after your mum's live-in carer leaves?
I'm just about to open a bottle of red. Haven't yet found a way of delivering it via broadband though, else I'd gladly share it with you
right back at you on my second glass and am a whole lot calmer well apparantly the agency wouuld like to send another care i am in a bit of a fix the idea was continuity of care clearly this is not going to happen even with a live in carer i am wondering if i should just give up work and resign myself to the care of my mum and i am not wanting to sound like some martar just someone who wants the best for mum in her worst years maybe the answer will b at the bottom of this bottle hicNoooooo! What happens after your mum's live-in carer leaves?
I'm just about to open a bottle of red. Haven't yet found a way of delivering it via broadband though, else I'd gladly share it with you
I doubt you found the answer at the bottom of that bottle, it never works
Some progress today as I've managed to secure the same Care Agency as mum had prior to her hospital admission to pick up next week with mum's daily care, as soon as the live-in carer contract ends. Initially I've asked for two visits per day and I'll use the cameras to monitor this regime to see if it is working before seeking any adjustments.
Some progress today as I've managed to secure the same Care Agency as mum had prior to her hospital admission to pick up next week with mum's daily care, as soon as the live-in carer contract ends. Initially I've asked for two visits per day and I'll use the cameras to monitor this regime to see if it is working before seeking any adjustments.
I doubt you found the answer at the bottom of that bottle, it never works
Some progress today as I've managed to secure the same Care Agency as mum had prior to her hospital admission to pick up next week with mum's daily care, as soon as the live-in carer contract ends. Initially I've asked for two visits per day and I'll use the cameras to monitor this regime to see if it is working before seeking any adjustments.
Great work, well done. It’s so difficult to organise. x
Thank you Dollybird16 - a rare bit of success!
However, warning, I'm going to rant to vent my frustration at today's events in making sure my mum's meds would be uninterrupted.
So, mum recently discharged from hospital. I have a copy of discharge letter that was sent to her GP, listing the revised meds (8 tablets!) needing to be issued after the 2week supply from the hospital runs out next Tuesday.
Phoned mum's GP surgery yesterday morning to check all is in hand with her meds. Receptionist checks and says no sign of discharge letter (7 days after mum's discharge)?
No problem I say, I have photos of the letter on my phone I can email to you.
"No", she says, "we are a satellite surgery from the main office and don't have any email here" ??? "You'll need to get the hospital to send a copy to the main office so they can scan it to mum's electronic patient record and we can access it from here".
I rang the hospital, got passed from one person to another. "Someone will call you back", yeah, right!
So I decided to phone the GP Surgery's "main office" to be told, "oh yes, we've got your mums' discharge letter here, but we've not allocated it to a GP yet...."??
They immediately allocate it to a GP based at my mum's satellite surgery and book a telephone call for the GP to call me at 3pm.
3pm, GP does call me and said she'd reviewed the meds and "put it on the system", but asked me to phone the pharmacy in the morning to check receipt of the prescription.
I phoned the pharmacy this morning (5th attempt as they were always busy) to be told no sign of prescription!! They asked me to ring GP surgery to get them to (re)send (it's electronically transmitted).
Phone GP surgery to see what the hell is going on, to be told by the receptionist that the GP has indeed "reviewed" mum's meds but there was no sign of any prescription being issued !!! Receptionist says she will transmit the prescription to pharmacy straight away and asked me to check after pharmacy lunch break thet they have it.....
I phoned the local pharmacy after lunch. They have supplied mum's tablets in blister packs for several years, to be told that they are no longer dealing with blister pack prescriptions. Instead, they have "centralised" blister packs to another branch in the pharmacy chain, about 2 miles away. They said I should have been told that information this morning, but a "temp" answered the phone who didn't know the systems properly. Gave me the phone number of the "central" branch to chase mum's meds.....
Got through on the 4th attempt. The (good humoured) pharmasist who answered the phone immediately recognised my mum's name as she was, quite literally, just making up mum's blister pack! She had received the prescription in the last hour.
She gave me confidence they will be delivered tomorrow or Friday at the latest, so not a problem.
Phew, got there in the end!
Unbelievable though, the interventions I've had to make, simply to ensure my mum's meds are sorted. Surely, this process should have runn seamlessly??
However, warning, I'm going to rant to vent my frustration at today's events in making sure my mum's meds would be uninterrupted.
So, mum recently discharged from hospital. I have a copy of discharge letter that was sent to her GP, listing the revised meds (8 tablets!) needing to be issued after the 2week supply from the hospital runs out next Tuesday.
Phoned mum's GP surgery yesterday morning to check all is in hand with her meds. Receptionist checks and says no sign of discharge letter (7 days after mum's discharge)?
No problem I say, I have photos of the letter on my phone I can email to you.
"No", she says, "we are a satellite surgery from the main office and don't have any email here" ??? "You'll need to get the hospital to send a copy to the main office so they can scan it to mum's electronic patient record and we can access it from here".
I rang the hospital, got passed from one person to another. "Someone will call you back", yeah, right!
So I decided to phone the GP Surgery's "main office" to be told, "oh yes, we've got your mums' discharge letter here, but we've not allocated it to a GP yet...."??
They immediately allocate it to a GP based at my mum's satellite surgery and book a telephone call for the GP to call me at 3pm.
3pm, GP does call me and said she'd reviewed the meds and "put it on the system", but asked me to phone the pharmacy in the morning to check receipt of the prescription.
I phoned the pharmacy this morning (5th attempt as they were always busy) to be told no sign of prescription!! They asked me to ring GP surgery to get them to (re)send (it's electronically transmitted).
Phone GP surgery to see what the hell is going on, to be told by the receptionist that the GP has indeed "reviewed" mum's meds but there was no sign of any prescription being issued !!! Receptionist says she will transmit the prescription to pharmacy straight away and asked me to check after pharmacy lunch break thet they have it.....
I phoned the local pharmacy after lunch. They have supplied mum's tablets in blister packs for several years, to be told that they are no longer dealing with blister pack prescriptions. Instead, they have "centralised" blister packs to another branch in the pharmacy chain, about 2 miles away. They said I should have been told that information this morning, but a "temp" answered the phone who didn't know the systems properly. Gave me the phone number of the "central" branch to chase mum's meds.....
Got through on the 4th attempt. The (good humoured) pharmasist who answered the phone immediately recognised my mum's name as she was, quite literally, just making up mum's blister pack! She had received the prescription in the last hour.
She gave me confidence they will be delivered tomorrow or Friday at the latest, so not a problem.
Phew, got there in the end!
Unbelievable though, the interventions I've had to make, simply to ensure my mum's meds are sorted. Surely, this process should have runn seamlessly??
Ah, the blister packs, Mums doc consistently ignores the request, back in the phone tomorrow to Doc and social services, deep sigh, but I will win.
Strange, I can't understand why your Mum's doc would have any problems with blister packs? My Mum's GP was fully supportive when I enquired and fully understood the need.
Keep trying
Keep trying
Well, here we are 4 months later. Mum's been teetering on the edge of not being safe on her own at home, even with 3 care visits a day. My wife and I finally decided about 3 weeks ago to call SW to ask for an urgent assessment as we (and mum's regular morning carer) felt mum was heading for being unsafe. I was told assessment visits were on a 4-6 week leadtime, but to phone them back if things deteriorated! Anyway, we had the assessment last Thursday (3 days ago), coupled with mum's GP doing a check the following day. All were agreed mum was now unable to manage her nutrition (she's now 6st 8lb, having lost over a stone in the last 4 weeks or so). The carers have tried to help mum with food, but mum simply refused their help, saying she wasn't hungry (even though the cameras showed she'd not eaten ANYTHING for 24 hours on one occasion). Mum is now physically and mentally much worse than a month ago, doing virtually nothing but sleeping most of the day and night. Mum's GP took her blood pressure 3 time on one arm and twice on the other before refusing to tell me the reading, just saying "very low"! GP thinks mum's body/brain may be deciding "it's time" and shutting down....
So, decision made, mum urgently needs to move to a RH where they can monitor and help her 24/7. My wife and I hit the phones on Friday (two days ago) and managed to find two local homes with space that ticked all the boxes, subject to assessments of mum's needs, and site visits to talk to the management and staff.
Ideally, we would have liked mum to move directly into a care home located near our home, 180 miles away, but mum's GP, and we, agreed mum's frail condition meant this was unwise.
So, one of the RH's (let's call it Home AH) was able to send out a manager to assess mum on Friday and agreed they could meet mum's needs (at quite a cost, mum will be self-funded). The 2nd home (Home AS) said they couldn't assess mum straight away, but we could go and visit the home.
So, my wife and I visited AH and AS later on Friday and decided the more expensive home, AH, (gulp) was by far the better of the two. We were very happy with the atmosphere, the staff, the facilities and the room that mum would have. We arrived just as afternoon snacks were being served - lovely cake and fruit selection, a bit like a posh hotel! We also managed to randomly interact with 3 residents during our visit, who all had dementia to a similar degree to mum, but all seemed content, relaxed and happy.
So, tomorrow is the big day when we take mum to AH. We can't tell her where we are going, as she has made it clear on many occasions that she will not go to a RH. Sadly, after 3+ years of doing our best to meet those wishes, we can see her best interests will be met by a RH, even if she cannot see it. A horrid decision to make and, after some agonising over the the past week, I'm more convinced than ever it's the right one.
So, my wife and I are dreading tomorrow, when we have to leave mum at AH (even though the people there are lovely) knowing she will think we have betrayed her by taking her away from her home.
I thank everyone who has posted on this great forum, as reading many, many posts has added to my belief that, horrid as it seems, we are acting in mum's best interests. It's clear that many on here have trodden this same path before us.
So, decision made, mum urgently needs to move to a RH where they can monitor and help her 24/7. My wife and I hit the phones on Friday (two days ago) and managed to find two local homes with space that ticked all the boxes, subject to assessments of mum's needs, and site visits to talk to the management and staff.
Ideally, we would have liked mum to move directly into a care home located near our home, 180 miles away, but mum's GP, and we, agreed mum's frail condition meant this was unwise.
So, one of the RH's (let's call it Home AH) was able to send out a manager to assess mum on Friday and agreed they could meet mum's needs (at quite a cost, mum will be self-funded). The 2nd home (Home AS) said they couldn't assess mum straight away, but we could go and visit the home.
So, my wife and I visited AH and AS later on Friday and decided the more expensive home, AH, (gulp) was by far the better of the two. We were very happy with the atmosphere, the staff, the facilities and the room that mum would have. We arrived just as afternoon snacks were being served - lovely cake and fruit selection, a bit like a posh hotel! We also managed to randomly interact with 3 residents during our visit, who all had dementia to a similar degree to mum, but all seemed content, relaxed and happy.
So, tomorrow is the big day when we take mum to AH. We can't tell her where we are going, as she has made it clear on many occasions that she will not go to a RH. Sadly, after 3+ years of doing our best to meet those wishes, we can see her best interests will be met by a RH, even if she cannot see it. A horrid decision to make and, after some agonising over the the past week, I'm more convinced than ever it's the right one.
So, my wife and I are dreading tomorrow, when we have to leave mum at AH (even though the people there are lovely) knowing she will think we have betrayed her by taking her away from her home.
I thank everyone who has posted on this great forum, as reading many, many posts has added to my belief that, horrid as it seems, we are acting in mum's best interests. It's clear that many on here have trodden this same path before us.
