Dementia diagnosis for Mum, now what?

I am sorry you had this experience, diamondlily.

It is difficult to tell whether Aricept is working as it only slows the progress and, of course, no one knows how fast the decline might have been without it.

Everyone's dementia journey is different.

My mother had Alzheimer's and Dad tried to keep her at home as long as possible, (with family help), but it reached the point where she had to go into a care home. Social Services were worse than useless, and Aricept did nothing for her.

Her condition rocketed downwards very quickly.

She died of Pneumonia in the care home, which was a relief, to be honest.

Then my Dad contracted Vascular Dementia, and again, we tried to keep the show on the road, but, inevitably, he ended up in a nursing home. He died of Covid during lockdown.

These illnesses drag the life and joy out of everything. You end up mourning the person you knew, long before they die.

Just try and source help - I had to fight every inch of the way to get help from agencies.

Jaxjacky

Do you have Power of Attorney Pammie1?

Yes, I’m lasting power of attorney and hospital and GP surgery have copies, but so far doesn’t seem to make much difference when it comes to addressing mail to her, even though I’ve stressed to both that if she opens it before I get to it, whatever’s in it could be missed because she tries to hide everything !!

I saw the GP on Monday and mentioned this, and the fact that whenever there was telephone contact they were still insisting on getting permission from mum before speaking to me. She confirmed they had the LPA on record and said she’ make sure phone calls and mail are directed to me. It’s more difficult with the hospital because mum is under several different clinics and they don’t seem to have joined the dots !!

The dementia specialist nurse from the surgery came out to see mum last week. It was described as an ‘annual review’ which made me laugh, because she was diagnosed three years ago and this is the first time anyone has ever been out from the surgery !! It was actually just a box ticking exercise to update their records, but he insisted on addressing his questions to mum, even though I showed him the LPA and warned him that mum wasn’t having a good day. It took twice as long to get through it as mum was clearly confused and I had to keep jumping in to give the right information. Mum does still have capacity on her good days, but this wasn’t one of them and the LPA didn’t seem to mean much. Exasperating sometimes.

Do you have Power of Attorney Pammie1?

NannaFirework

Diagnosis should be the unlocking of help, assistance and support - hope this is the case for you xxx
Our DM was only diagnosed because she fell and hurt her hip and a wonderful a&e medic got a ct scan and therefore the Alzheimer’s diagnosis.
Mums gp surgery staff have been, on the whole absolutely useless : phoning her asking questions, not looking at Mum in the consulting room and not being kind at all - they have been disgusting and it’s hard enough caring and organising help for ones loved ones but the Nhs, social workers, etc have been awful - no phone calls back - rapid response for crisis situations has been none existent !
Really hope your future is brighter than our DM’s looks in Ashford Middlesex…

I have this problem with our GP surgery too. Mum is 92 and with vascular dementia. Up until recently they insisted on her coming to the surgery for appointments/blood tests etc. It was only after she fell and broke her wrist that they accepted my long standing protestation that she’s a fall risk and should be classed as housebound. She now gets most services home based, including the most recent Covid jab. I’ve got her LPA but they, and the hospital, still insist on speaking to her on the phone before they will talk to me, and they still address letters to her personally, so if I don’t get to the door before her, she sees her name on the envelope and either hides it, or tears it up - cue missed appointments etc. I’ve tried and tried with this, but they still do it. Maddening !!

Saggi

I’ve looked after my husband since his stroke 27 years ago ….which led to vascular dementia 7 years ago and now been diagnosed with Alzheimers 3 years ago… trying to lift him from the floor for third time last May I had my third stroke , I also have arthritis ….it became impossible and my kids said “ enoughs enough mum” . He is now in an excellent home (Council run) …his first ( private) was awful and all about the profit margins!!! He’s a 20 minute walk away , and although thats difficult in my condition ( don’t drive) he’s better off than when I was struggling to be carer/nurse/psychiatrist/companion.
People talk about their ailments and pain …but if there is a worst thing on this earth than dementia I’d like to know what it is.
The sense of relief when my husband was finially taken from my responsibility was overpowering. .my body has gone into shock …my arthritis is worse ….and my pain is great, but the mental anguish of having to be on guard 22 out of 24 hours a day is over.
I think the straw that broke this final camels back was the walking frame being thrown downstairs and knocking me senseless for a minute or two while he walked around me telling me to get up! You will try to struggle on ….I know that ….remember your health is so important . I didn’t remember and went on too long…. too late for me , but you must get all the help that’s going out there. I had Attendance Allowance at top rate…which stopped the day he went into the home of course but I found it a great help with being able to adapt house to his needs. Now of course I’m stuck with those adaptations ( bath out and big shower in!) and of course with my conditions I would prefer a bath back !! But no money left to pay for it. So be extremely careful what changes you make …unless of course it doesn’t matter to you because your mother is staying in her own home? Please get in touch with Alzheimer’s Society as they were great help.

You mentioned that you have arthritis. Can you claim Attendance Allowance for yourself ? If you qualify, it could possibly passport a family member to carers allowance for you provided they provide care for more than 35 hours a week and don’t earn above the threshold.

silverlining48

Attendance allowance goes with the recipient and will still be offsetting the care home cost Saggi.
You have had a lot to deal with, dementia is a cruel and difficult disease, it’s your time now, look after yourself .

Unless you’re completely self funding, Attendance Allowance stops when you go into full time care.

My sister has Fronto Temporal Dementia. I have found some brilliant YouTube videos of lectures by a Dementia OT called Teepa Snow. She has lots of videos and is so knowledgeable, she explains what each type of dementia means, and what is going on in the brain and how to communicate and understand. . She will role play and she’s just brilliant. She’s helped me to understand so much. Well worth a look.

win

Primrose it is law that a hospital discharge has to include a CHC assessment when Dementia has been diagnosed. I obtained it for both my late husband and late mother. It is not impossible to obtain, but obviously the patient has to qualify. on NHS ground not Social grounds. You can find the toolkit on line and do the assessment yourself then compare it with the professional's one, discuss any discrepencies between the two and you should get there. Work with your Social worker and carers group, there are there to support you and the patient.

Must be a new thing then because staff claimed to know nothing about it and that was approx 5/6 years ago. Eventually a nurse brought a barely legible photocopied piece of paper out of a filing cabinet but that was only because I insisted.

Attendance allowance goes with the recipient and will still be offsetting the care home cost Saggi.
You have had a lot to deal with, dementia is a cruel and difficult disease, it’s your time now, look after yourself .

Primrose …CHC is an NHS secret as you say because CHC is near impossible to get!
My husbands care is over £4000 a month (Council home!) and because I still need to live somewhere they can’t take our house to pay for it ! But my share of his care is £1,028 per month…..still who needs to eat every day?!🤷🏻‍♀️

I’ve looked after my husband since his stroke 27 years ago ….which led to vascular dementia 7 years ago and now been diagnosed with Alzheimers 3 years ago… trying to lift him from the floor for third time last May I had my third stroke , I also have arthritis ….it became impossible and my kids said “ enoughs enough mum” . He is now in an excellent home (Council run) …his first ( private) was awful and all about the profit margins!!! He’s a 20 minute walk away , and although thats difficult in my condition ( don’t drive) he’s better off than when I was struggling to be carer/nurse/psychiatrist/companion.
People talk about their ailments and pain …but if there is a worst thing on this earth than dementia I’d like to know what it is.
The sense of relief when my husband was finially taken from my responsibility was overpowering. .my body has gone into shock …my arthritis is worse ….and my pain is great, but the mental anguish of having to be on guard 22 out of 24 hours a day is over.
I think the straw that broke this final camels back was the walking frame being thrown downstairs and knocking me senseless for a minute or two while he walked around me telling me to get up! You will try to struggle on ….I know that ….remember your health is so important . I didn’t remember and went on too long…. too late for me , but you must get all the help that’s going out there. I had Attendance Allowance at top rate…which stopped the day he went into the home of course but I found it a great help with being able to adapt house to his needs. Now of course I’m stuck with those adaptations ( bath out and big shower in!) and of course with my conditions I would prefer a bath back !! But no money left to pay for it. So be extremely careful what changes you make …unless of course it doesn’t matter to you because your mother is staying in her own home? Please get in touch with Alzheimer’s Society as they were great help.

Just to lighten the mood let me tell you a story

My friends mum was in the same care home as my mum and she told me this
One day she went to visit and found her mum sitting on a chair in the corridor she pulled up a chair and sat next to her and asked why she was in the corridor she got no answer but a humph She carried on making conversation but getting little or no response After a short while the mum got up and walked away, my friend waited a bit and when she didn’t return thinking she’d gone to the toilet she headed off to see if she could find or help her She found her sitting in another corridor My friend sat next to her and said ‘Mum are you ok I wondered where you were’ The mother looked at her and said ‘I came here to get away from some old woman that kept taking to me’!!

I agree with Wellbeck. My mother has old age dementia and I avoid mentioning my father who has died. I gently change the subject and it helps. Dementia is an awful disease and a lot of kindness and patience is necessary. My mother is now in a Care Home as her needs now are far greater than I could provide. She has very good days remembering things but then can be quite confused on others. She will be celebrating her 103rd birthday on Saturday and the oldest in the home. I find that music and songs she knows helps.

Primrose it is law that a hospital discharge has to include a CHC assessment when Dementia has been diagnosed. I obtained it for both my late husband and late mother. It is not impossible to obtain, but obviously the patient has to qualify. on NHS ground not Social grounds. You can find the toolkit on line and do the assessment yourself then compare it with the professional's one, discuss any discrepencies between the two and you should get there. Work with your Social worker and carers group, there are there to support you and the patient.

Sorry you are finding yourself in this position SecondhandRose but do not despair. There is much help out there now. Get to know your LA carers support group and contact Dementia UK to find out where your nearest Admiral Nurse is based, make contact she will be your life line for everything. Once you retire carers allowance finishes, but there are grants and other thing that can be applied for through your local Authority if required which are not means tested. I cared for my late husband for 11 years with VAD and also my late mother for 2 years during the same time both in wheelchairs and one blind. You can live well with Dementia, provided every one lives in their world and do not contradict nor confront or ask too many questions, which can make them feel aggitated. What they say is right in their world, just go along with it and you will be fine. You will never convince them otherwise so do not even try. It makes life so much easier for you all. Lots of fact sheets on both Dementia UK website and the Alzheimer's Society website too. It is early stages by the sound of it, so you will learn as you go along. Enjoy each day and make lots of nice memories too.
Being obsessed with paper is one of the most common things, wrapping everything up, folding tissues, tearing them up and whatever else. Hiding things anywhere and every where including their pads. You need to have eyes in the back of your head at times. The times we lost teeth and glasses is no one's business. Look after your dear mum, she will need you more than ever.

NannaFirework

Diagnosis should be the unlocking of help, assistance and support - hope this is the case for you xxx
Our DM was only diagnosed because she fell and hurt her hip and a wonderful a&e medic got a ct scan and therefore the Alzheimer’s diagnosis.
Mums gp surgery staff have been, on the whole absolutely useless : phoning her asking questions, not looking at Mum in the consulting room and not being kind at all - they have been disgusting and it’s hard enough caring and organising help for ones loved ones but the Nhs, social workers, etc have been awful - no phone calls back - rapid response for crisis situations has been none existent !
Really hope your future is brighter than our DM’s looks in Ashford Middlesex…

Sorry to read that. Pretty much the same here but you would expect people, especially professionals, to have some understanding of dementia since it has been so widely mentioned in recent years.

I have had qualified nurses ignoring Mum and asking me questions about her! I used to point out to them that although she has the diagnosis she is still able to understand and talk.

Diagnosis should be the unlocking of help, assistance and support - hope this is the case for you xxx
Our DM was only diagnosed because she fell and hurt her hip and a wonderful a&e medic got a ct scan and therefore the Alzheimer’s diagnosis.
Mums gp surgery staff have been, on the whole absolutely useless : phoning her asking questions, not looking at Mum in the consulting room and not being kind at all - they have been disgusting and it’s hard enough caring and organising help for ones loved ones but the Nhs, social workers, etc have been awful - no phone calls back - rapid response for crisis situations has been none existent !
Really hope your future is brighter than our DM’s looks in Ashford Middlesex…

I have both parents with vascular dementia both now in separate homes. It’s a long and hard journey for all but also individual to all. All I have to say is make sure you look after yourself and your wellbeing and don’t feel guilty as it keeps you going long term. Advice to me by my GP.

There is a very useful site called Care to Be Different.
I found out about it when I was looking into care home fees because my Mum had to sell her very modest home to pay her £900 a week fees.

I had tried to get help with the fees when she left hospital but the staff seemed to know nothing about NHS Continuing Health Care, where the NHS pick up the tab. For most illnesses people get help but dementia is forgotten. Mum was very poorly having spent 9 weeks in hospital, having arthritis in her spine, having a stoma, very poor mobility, repeated urine infections, kidney problems,dementia, anxiety etc etc and everything I scored on the form the nurse down scored and said she would not get CHC.

So we paid for over 3 years but when she was on end of life care I tried again just myself and she got her care paid for the last few months of her life. I used the Fast Track process.

It’s a really useful site. CHC is one big secret!!

No advice as I haven’t dealt with it, other than knowing it’s a cruel disease. I just wanted to send you positivity and love as your post came across as sad. 🌸

There's a great group on FB called Rights for Residents which was created during Covid to help support and share information about care homes and tge hortufic situation family found themselves in when they were banned from visiting their loved one. Everyone on that group has someone they know who has dementia.

Age UK is a goldmine. Have a look at their list of information guides and factsheets. There will be stuff there that is useful - take it in sessions as there is a lot to understand. Help is 'out there' as they say. www.ageuk.org.uk/services/information-advice/guides-and-factsheets/

seadragon

Sally Magnusson wrote an excellent book - Where Memories Go - about helping look after her mum when she was diagnosed with dementia. She found music was a great help and has set up an organisation - Playlist - to help people make Playlistsof their own or for others.

My friend is involved in Playlist for life, and they have had some fantastic results.

www.playlistforlife.org.uk/

Alzheimers Society Talking Point forum can also be a great support.

I recommend the book "Contented Dementia" by Oliver James. (Other books about dementia are available.) I found this helpful, as have friends to whom I have passed on my copy.