Stages of dementia

geniemax

Registered User
Oct 30, 2015
27
0
Hi MrsC :)

In a bit of a rush, but just wanted to say that if your mum needs care, and especially if you don't have LPA, you apply to the local council social services department (often called adult social care dept) for a care needs assessment for your mum. If you don't have access to her funds, it would be up to them to arrange care and to deal with your brother on the money side of things.

It would be much easier if you do have LPA, but I just wanted to reassure you that there is a safety net :)

Take care :)

Lindy xx
Ears
Hi there my dad was driving up untii two years ago it was hard but after a routine visit to the doctor it was clear that dad was not fit to drive I new this beforehand but coming from the doctor meant that I was not the bad guy I suggest to do the same and arrange a routine check up before its too late good luck
 

Goldsmith

Registered User
Oct 21, 2015
18
0
Maldon, Essex
Ive been reading this thread with interest but have to join in now that social workers have been mentioned. We took in my father in law roughly six weeks ago and we have had such a struggle to get any help and we just dont know what help is actually available to us. A social worker did ring about four weeks ago to introduce herself and then tell me she would not be able to visit until the end of next week. We've had a visit from a physio who took away the bed guard he used for years and supplied a 'better one' that is quite frankly useless. The doctor prescribed a medication that totally zonked my lovey FIL out to an extend which can only be described as pityful. We feel that we were handed this lovely old man and told 'tat tar then, off you go'. Im so pleased I discovered this forum and reading the past threads have been a real eye opener, although its a wee bit selfish to say this but im so pleased we not going through this alone. Currently FIL has just realised he has a problem, apparenty he has never met me before and thinks my husband - his son - is his brother. He has gone from being a proud, independent and self sufficient man to needing 24 hour care, he is totally unable to think or do anything for himself and although we have not left him alone for one minute since his arrival, day or night, he sits and cries all day for his daughter.
Dont start me off about trying to get benefits but right this minute I would welcome some advice on how to calm him without making him drousy. He is so anxious its heartbreaking to witness. I send a big hug to all reading this and all who are currently trying to cope with loved ones.
 

MrsChristmas

Registered User
Jun 1, 2015
178
0
Hello again...I hope I did not offend...

There is much in your last post MrsChristmas, that chimed with me too. We were not able to get mum diagnosed for many years, despite the obvious symptoms of dementia that she was exhibiting, for as far as she was concerned (and to an extent my brother too!) there was nothing wrong with her. My brother also said my father and I did too much for her.

Eventually I wrote a letter to her GP outlining my concerns, along with the symptoms and I asked if he could invite her in under the guise of "now you are over 70 we run more regular health checks on you". A diagnosis certainly will help to open up access to other avenues of support for both of you.

My mother was also lost in new surroundings, unable to find her way to the toilet and back again if out at the theatre or a restaurant.

If I offered to do anything around the home or garden she would get exasperated with me and say that she was perfectly capable, had managed all those years....... Eventually I succumbed to doing her gardening in the wee small hours of the night with a head torch, far from ideal and frankly not to be recommended.

The reality is that your mum, like mine, is in denial, resenting the implication that she can't manage, and thus will resent any handyman or handy-woman that you arrange. Likelihood is her dementia will cause her to accuse them of stealing / not doing a good job etc. Her dementia is not within her control, it isn't what or how she would have wanted to be, and hanging onto that thought is how I found the strength and patience to continue to help mum, despite her assaults on me (verbal and physical).

Would it help to set a mental time limit on how long you are prepared to be the "go for"? Review things in the spring? perhaps suggest to your brother that he might like to come and spend a long weekend with your mum so that you and your partner can have a 5 day break, might help him to realise the true extent of her dementia? He will think you are overreacting, will not come to stay etc, so make sure that you have his mobile number stuck everywhere so that your mum can call him easily!

Good luck.

Hi there again..

I hope I did not offend by asking you about your experiences with your mum maybe you don't want to share this on a forum.

Thank you for your help.

Kind regards

Mrs C
 

Clueless2

Registered User
May 14, 2015
34
0
MrsC, the only pearls of wisdom that I can give you are

1) reading the "Contented Dementia" book is as good a start as any into beginning to understand dementia.

2) If you see one person with dementia, that is exactly what you have seen; just one person, with THEIR dementia. As I understand dementia, (mum has Vascular Dementia) it arises as a result of the "dying" of parts of the brain. Therefore it makes sense that as no two persons experience exactly the same parts of their brain ceasing to function, that no two people have exactly the same dementia symptoms.

3) Despite 2) there are some common traits, and I expect if you google "stages of dementia" you will find some information about symptoms that are more common at particular points on the journey. It isn't an exact science!

4) TP members are a wonderful supportive source of advice.

My mum began to show early short term memory issues approx. 2004, much more noticeable to those that knew her well by 2006. By 2008 she was constantly hiding things in safe places, by 2010 paranoid.

Life became more complicated and stressful in 2011 when dad was diagnosed with cancer, by then he was her carer and she was not eating of remembering to drink if he wasn't there, but stress could have rapidly compounded her dementia. At that point mum thought that she did the housework etc, she didn't, nor did she let my dad, so I would nip round and "do" when my brother took her out.

By 2012 she couldn't be left home alone for more than 30 mins or she would start to panic, phoning the family asking where dad was, or go out looking for him.

Late 2014 when dad required palliative care, live-in carers moved in. Mum resented then and could not remember why they were there (we told her they were nurses for dad), sometimes she forgot dad had cancer, no longer able to make tea / coffee, unable to use the telephone or tv controls, not washing herself or changing clothes. She was very abusive and aggressive to the carers and on occasion myself. She would wake and hit dad in the night, when he slept in a hospital bed in the spare room, upset that he wasn't in their bed.

Dad passed away April 2015, mum not told, simply he was the love of her life and it would have killed her. Mum went into a Care Home in August, where her anxiety levels have dropped and she is more stable. Since being there the home have, together with her new GP weaned her off all the calming medications that she had been on (Trazadone and Diazepam). It helps that she thinks another resident is my dad, but that's another story!

I'm not sure whether that helps at all.

Goldsmith,
Mum was put on Risperidone whilst dad was in the hospice. It slowed her to a zombie; shuffling, drooling and talking complete gibberish, we went back to her GP and he tried something else, which had far less impact. Our experience of the Mental Health Team was far from good. We had a good relationship with her GP who was willing to respond to our concerns.

Re anxiety, just try to keep yourselves calm, use an open and relaxed body language, a lightness in your voices, distractions to subjects he enjoys talking about (hobbies?, ask his advice about something?) and lots of love lies. Work out what is at the cause of the anxiety and find a soothing short sentence that lets FIL know that you are dealing with his concern and that all is well. Good Luck.
 

Goldsmith

Registered User
Oct 21, 2015
18
0
Maldon, Essex
What a blummin' awful day. Firstly I have been up all night with FIL more restless and confused than I have ever seen him. He did not sleep at all, not for even a minute. I sleep on the settee next to him and I sat on my iPad from about 2ish, did some washing, set the dishwasher and generally did what I could whilst keeping one eye on him. At 6 o'clock I turned my back for a minute and heard an almight crash where he had fallen on to the wood burner and cracked his head. I called a paramedic who told me he had an infection and the GP later confirmed this through a urine dip test. I have to add that the paramedic gave me a pot and helped FIL fill it and then sat with him while I literally ran it the few yards to the surgery. Meds were put out for me which was usless because I couldnt leave him to go and collect them and in spite of the surgery being practiclly at my garden gate they did not operate a home delivery service. FIL has been so spaced out and confused all day and I have not been able to leave him for a minute, even having to ask my neighbour to sit with him whilst I went to loo. Then whilst the paramedic was checking him emy OH rang to say he had been involved in a car smash and then I received news to tell me my friend of 50 years had died.
The doctors surgery asked me to contact the social worker department and insist on someone coming out today to help me with emergency carers which I did and this wish was granted over the phone only to have the arrangement cancelled due to an emergency but not before the SW told me that was not something she could arrange anyway and ref me back to the surgery. The surgery just ref me back to the SW again and I was promised a call. That call came at 5.30 and I was then told it was too late to get carers out to me tonight but a SW would be in touch tomorrow or Friday. So, I face another night tonight on walk about with a very old, sweet natured and humble gentleman who insists he has never met me before and keeps asking my name and also keeps asking when his daughter will visit.
I know I am not alone with coping with this dreadful illness but like they say 'its good to talk'. I could have done with an all night chat line last night.
 

chick1962

Registered User
Apr 3, 2014
11,282
0
near Folkestone
What a blummin' awful day. Firstly I have been up all night with FIL more restless and confused than I have ever seen him. He did not sleep at all, not for even a minute. I sleep on the settee next to him and I sat on my iPad from about 2ish, did some washing, set the dishwasher and generally did what I could whilst keeping one eye on him. At 6 o'clock I turned my back for a minute and heard an almight crash where he had fallen on to the wood burner and cracked his head. I called a paramedic who told me he had an infection and the GP later confirmed this through a urine dip test. I have to add that the paramedic gave me a pot and helped FIL fill it and then sat with him while I literally ran it the few yards to the surgery. Meds were put out for me which was usless because I couldnt leave him to go and collect them and in spite of the surgery being practiclly at my garden gate they did not operate a home delivery service. FIL has been so spaced out and confused all day and I have not been able to leave him for a minute, even having to ask my neighbour to sit with him whilst I went to loo. Then whilst the paramedic was checking him emy OH rang to say he had been involved in a car smash and then I received news to tell me my friend of 50 years had died.
The doctors surgery asked me to contact the social worker department and insist on someone coming out today to help me with emergency carers which I did and this wish was granted over the phone only to have the arrangement cancelled due to an emergency but not before the SW told me that was not something she could arrange anyway and ref me back to the surgery. The surgery just ref me back to the SW again and I was promised a call. That call came at 5.30 and I was then told it was too late to get carers out to me tonight but a SW would be in touch tomorrow or Friday. So, I face another night tonight on walk about with a very old, sweet natured and humble gentleman who insists he has never met me before and keeps asking my name and also keeps asking when his daughter will visit.
I know I am not alone with coping with this dreadful illness but like they say 'its good to talk'. I could have done with an all night chat line last night.

Oh Goldsmith what an awful night and day you have had. Sometimes there are no words and quite frankly I am shocked but not surprised with SW . Sending hugs your way xxx


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Goldsmith

Registered User
Oct 21, 2015
18
0
Maldon, Essex
And my dreadful day just got worse. I contacted a care agency and asked for an overnight carer as by dinner time yesterday my poor FIL was really 'out of it', aggitated and non stop walking around, I was extremely tired and told the agency I was happy to pay for someone to come and help me as he was too much for one person to handle. I was willing to sit all night with a carer and so we could help each other. At 11 o'clock a carer arrived and after a cup of tea together she told me she was ok to be left and that I should use the oportunity to catch up on some sleep. So by 12 I was all bathed and relaxed and ready for my big night in own bed. However, some time after I heard a thud and as there was no sounds of anyone in trouble I dismissed it as the sound of a strange person walking around me kitchen or maybe a cat jumping down but then I was woken up by a tap on the door and the carer asking for my help. No urgency in her voice allerted me to what I was to see when I walked into my FIL bedroom. Blood everywhere and an extremely distressed man writhing around on the floor. I grabbed a phone and sat holding a towel to stem the flow while speaking to the ambulance service all the time aware of the carer just standing looking. By 2AM FIL was packed off in an ambulance and the carer left without saying good luck or even Im sorry, nothing. FIL has been kept in to have his head stitched and his infection sorted. I got home from the hospital at 8 this morning and read the carers notes. She has not fully explained herself and working out the actual time she was alone with him totals approx one hour, she admitted to paramedics that she must have dozed off. And to top it all she has signed off her notes with the comment 'left safe', yeah, thats because he was safely in the hands of the ambulance men. I feel that I have let him down by leaving him with strangers and now today I have such a bad headache I dont feel able to drive the hours journey to visit the hospital.

Ive also had a call from the social worker who is yet to assess us, she now tells me she cant come without fIL being here as she needs his permission to talk about him. At this moment in time FIL doesnt even know his own name and everytime he sees me its like the first time. The POA has had to be returned because it is stated that his birthday is 2016 - so, really he hasnt even been born yet. How hard can it be to get help for a man who has survived two world wars?
 

little shettie

Registered User
Nov 10, 2009
221
0
Oh I can completely relate to your posts, they sound just like what I've been through with my mum!! Let me tell you, there is no one more strong willed and reluctant to any change whatsoever than my mum!! And yet I got her diagnosed with AZ as she had the signs that you mentioned plus more. My dad always wanted us to get LPAs when he was alive as he knew what this would mean if something happened to him or mum. My oldest brother was supposed to sort this out as I was doing everything else, caring for both my parents, dad physically ill, mum mentally ill for 7-8 years. Then dad died and because we didn't get the LPAs in place, we knew we were in trouble as mum still had full control of her finances and the bank would not let us do anything unless mum agreed and sometimes she would and other times she would not!! She regularly lost her debit card, had pin numbers written in the lining of her purse and handbag, it was a nightmare. Fortunately my son came to the rescue, he told me we needed to get the LPA done while mum still had some semblance of normality about her. So he dealt with it, explained to mum how important it was otherwise the government would get all the money and that she and dad had worked for all their lives and take the house too if necessary. That did it! Mum said noway where they getting their hands on her money and my son took her to a solicitor who after speaking to mum, decided mum did have the capacity to understand the implications of the LPA and we got them done. Did both, financial and health and welfare which I would urge you to do as when it comes to making decisions for mums care, you will need that control for mums sake. So can your brother do that, or someone mum really likes and trusts, other than yourself? You'd be amazed how different they react to someone else. I could usually rub mum up the wrong way without trying!! As for the driving, can I just say you must take your mums keys away from her. Your mum is a danger to herself and to others and if she had an accident and hurt or killed someone else, you would never forgive yourself. If she has dementia, and it sounds very likely, she could forget which side of the road to drive on, all sorts of horrific things could happen. I don't mean to frighten you, but I am a qualified driving instructor and these things are the reality, I have witnessed some first hand. I had to take my dads keys off him, was the hardest thing I ever did, cried all the way home but, it was the right thing to do. Wish I could be more help to you, hope you get mum sorted and hope the LPas get sorted as they are really important. Wishing you all the luck in the world xx
 

little shettie

Registered User
Nov 10, 2009
221
0
Goldsmith, just read your posts, so sorry to hear about FIL. I see you live in Maldon, I am not a million miles away and if you'd like to share and chat anytime, please private message me and I will be more than happy to give you my contact details, just to chat, even online can help. xx
 

Clueless2

Registered User
May 14, 2015
34
0
Goldsmith,
Words fail me, it seems utterly incomprehensible how or why SW needs to speak to your FIL, to gain his permission to speak to you considering the medical condition that he is in, frankly if it were me I would be asking, no probably demanding, to speak to SW's line manager and reminding them of their "duty to care" "vulnerable elderly person" etc.

You are providing a level of care that it would appear not even a paid carer is capable of, an hour into the job. I hope that you are robust if the agency expect you to pay!

Perhaps FIL will be assessed before leaving the hospital?!
 

Avenger

Registered User
Oct 25, 2012
10
0
Social workers

I hope the member who started this post and those who have already responded don't mind my jumping in on your tail like this but I can't hold myself back after reading your complaints about some social workers. People respond as they find of course and I'm sure there are some very good social workers, but my experience of the few I have met has, like other members state here, not been a positive one. I have known two in my county who were dealing with my dementia affected parents, one of them is lazy and going through the motions, has no innovation and cannot think outside the box, and the other one who took over the role for a while called in our house to introduce herself and promised that she was available at any time to listen and help. When that was put to the test three months later It proved to be a hollow gesture. I went into a lot of trouble to write her a letter explaining what my parents' situation was, and I got no reply. Having given her ample time to reply and none seemed forthcoming I rang her office ; she was still working there but I didn't get to speak to her, but was told that her responsibility for my parents had now been switched back to the previous social worker. So what was the point of having her as our social worker for a mere three months, I ask. These SW are more highly paid than care home workers or domiciliary care workers who work harder and have to pile in more hours doing a work that is demanding and, let's face it, not always very nice, but can be rewarding for them when they know they make a difference to someone else. SW are chiefly administrators and facilitators, and have to undergo hardly none at all of the physical and emotional stress carers have to put up with.
Discovering a copy of that letter recently that I wrote to the SW last year, which she ignored, has made me annoyed again. My parents have gone to a care home since where they are being looked after. I wish I could have the means and resources to look after them at home but I'm on my own, I have no brothers or sisters, no wife or kids, and if I stayed at home I would get paid pittance for being a carer. People have been radicalized for a hell of a lot less reasons than children with parents suffering from dementia. People like me are very tolerant and forgiving.
I won't name the county council of the said SW but I live in Conwy North Wales.
Sorry about the rant but that's how I feel. I suspect many other users on this forum will agree with me.
 
Last edited:

Avenger

Registered User
Oct 25, 2012
10
0
I have found our county's social service to be aloof and ignorant. They were difficult to get hold of and nearly always I had to talk to another member of staff, not the social worker that was supposed to be responsible for my parent. When my parent was ready to be discharged from hospital and a meeting was called where several professionals were present, out of the six staff that were there the one who said least was the SW, she was bereft of ideas and comments and having her there was a complete waste of time.
 

chick1962

Registered User
Apr 3, 2014
11,282
0
near Folkestone
I have found our county's social service to be aloof and ignorant. They were difficult to get hold of and nearly always I had to talk to another member of staff, not the social worker that was supposed to be responsible for my parent. When my parent was ready to be discharged from hospital and a meeting was called where several professionals were present, out of the six staff that were there the one who said least was the SW, she was bereft of ideas and comments and having her there was a complete waste of time.

Totally agree with you ! I don't bother with them now as when I was at my lowest they promised enablement straight away and then didn't even contact me to let me know it was cancelled . Now they come once a year for their box ticking exercise and then they disappear for another year !!! Bb


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tatty

Registered User
Oct 14, 2015
61
0
SOCIAL Workers

Apparently my MIL social worker left last Friday before doing her needs assessment and my carers assessment:confused::confused: only know she's gone as she told by a housing officer in another L.A where MIL is eligble for extra care and Housing officer happened to mention it when discussing suitable accomodation , funnily enough housing lady assumed we knew:mad:. SW was offensive, incompetant and vague unfortunately I suspect these traits may be in the job specification_good riddance:p. God knows what the new one will be like when we ever get told officially she's gone.
 

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