What should we expect?

[Legion]

Hi, fiarly new to this as Mum has just been (or is just about to be diagnosed) with moderate Alzheimer's.

Some history:
Apart from her deaf dog, Mum lives alone. She is 74. My Dad died 18 years ago and I live in Somerset, my sister in Lancaster and my younger brother about 6 miles away (but he has 6 kids at home and is quite busy), my older brother died 6 months ago. He had been visiting Mum every day and once he'd gone her situation became very concerning with her not knowing what day it is, having a fridge full of out of date food and getting very anxious about little arrangements. I looks like my brother had been a big help but allowed her condition to go unnoticed.

She is now on week four of visiting the memory assessment centre. the nurse there speaks to my sister occasionally and Mum's Gp is very good but a bit in the dark (hense not knowing if she has been diagnosed). I have arranged a call with Mum's consultant for wednesday and dont know what to ask him.

I would like to know what we can do for her. I went up this weekend and had to clean the kitchen and bathroom, empty and re-fill her fridge and ensure that she had clean clothes. (she wasnt happy about my interfering but was ok about it in the end as I pointed out that my eyesight was better than hers). I am arranging to redecorate parts of the house to make it lighter and have got day clocks and reminder notes for her (near the phone). We have completed a form for a daily visit from someone with DWP, will they do anything to help (cleaning etc) or should we arrange that?

My sister says she is not very good at personal hygiene although I didnt really notice anything.

I will be asking the doctor when she is to start the meds (?aricept) but she is not good at remembering to take the ones she is currently on. She may also be prescribed anti-depressents as she is unhappy (suprise) and still grieving although she doesnt want to talk to anyone about that. I have asked her vicar to pop in but she says she hasnt seen him.

At some point we may need to look at alternative housing - any ideas on what is possible or works?

So far we are all a bit in the dark although we are optemistic that we are heading in the right direction. We'd just like to do what we can for Mum.

thanks

Legion

 

[Grannie G]

Hello Legion

I noticed many members have read your post but have been unable to offer the constructive help you ask for.

Once your mother has a diagnosis, she will be referred to Social Services. They will assess her needs and discuss with the family what should be put in place.

It is not written in stone that she will be prescribed Aricept, it will depend on the stage of her condition.

I sense your anxiety and wish to do the best for your mother, but I`m afraid little can be planned in advance, you may need to take it one step at a time.

I understand living a distance away makes you want to get as much resolved as possible in the shortest time available.

Get the diagnosis first and see what the consultant advises.

Please let us know. Once you know what is being offered, members will be more able to offer further support.

Take care xx

 

[Legion]

Thanks Sylvia

I've just found quite a bit of info in the fact sheets. I guess I am rushing things but you are right that being far away is driving my need to try to keep a step ahead (Mum's in Liverpool by the way). When I read others experiences it is pretty scary so knowing options in advance is important to me. I also see experiences where people have only got something that they knew to ask for. I only hope that the family can keep up a good level of support for Mum.

cheers

Jon

 

[daynurse]

I am in the same situation as you john waiting for a diagnosis i too want to be one step a head but i cant its just a matter of waiting... and then see what options are available fortunatley my dad is fit and healthy although 80 its taking its toll they both have agreed to sell up and move here we have room here but they want there own space at least its round the corner and not miles away saying that the current housing market is not good and it could be ages before they sell but dad knows he only has to get in the car when times get too much....

 

[Margarita]

She is now on week four of visiting the memory assessment centre. the nurse there speaks to my sister occasionally and Mum's Gp is very good but a bit in the dark (hense not knowing if she has been diagnosed).

Just bit confused in who in the dark doctor or you mother , as why would doctor not know if your mother being diagnosed or not ?

also wondering have you told your mother she may have a dementia, because how are you to get your mother to except outside help from social services as you will need an assessment on your mother care needs to keep your mother independent in her own home for as long as possible ( as that one of the many things to expect)

My be not at the moment, as you sound like you’re doing a great Job in supporting your mother at home.



My mother never understood what AZ or dementia meant if I said any think was wrong with her memory she do on the defense take it the wrong way , get very angry with me thinking I am implying that she Mad , which of course I am not .

 

[sue38]

Maggie I think it is Legion's mum's GP who is a bit in the dark. Have I got that right? I'm not sure at what stage, if at all the consultant will liaise with the GP.

In our case the consultant wanted to check with the GP if my dad was suitable for certain drugs (in our case Ebixa) because of his reduced kidney function.

I assume that once the diagnosis is made that the consultant will report to the GP but again I'm not sure. Legion, maybe something to ask the consultant.

Have you looked at the fact sheets on the main AS website?:

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

You will find lots of information there, but I agree until you know the diagnosis, it is difficult to plan.

 

[fossil]

All I can say is try not to rush to get things sorted out, just for your piece of mind, as it will inevitably return to bite you in the proverbial.
A lot of what can be offered depends on your parents finances and whether they will need to be self funding. Speaking from my own bitter experience if self funding, I was virtually left to get on with it Social Services just gave me a booklet and told me to sort it all out. maybe I was just unlucky? Until your mother has been fully diagnosed you will not really know where you are< also she may not be prescribed aricept, it's not suitable for all, neither is it a cure all. It's not easy for AD sufferers to actually realise they have an illness and many stubbornly refuse help.
I wish I didn't sound so gloomy but you will learn to cope hopefully
Hugs X

 

[pebble]

Replying as my Mum was first diagnosed in April with moderate AD, lives alone 200 miles away (in Scotland). This is my mixed experience - The consultant said Mum was really too ill to be at home but we should try a care package and called in his Old Peoples Team "as a matter of urgency". He prescribed Aricept but said a carer would be needed to give it to her once a day. I was surprised how slowly the wheels turned after that. One of his Team is the appointed Social Worker. Over the next few months people visited mum occasionally (community psychiatric nurse and occupational therapist mainly). A care assessment was carried out, all without telling me! - and I still don't really know what the package is (I have nothing in writing and feel I am sidetracked because I live so far away). (I am the only next of kin following the recent death of my sister, who lived near Mum.) Any way a care package started a full 5 months after the diagnosis!! Mum went through a very aggitated phase after diagnosis so it was maybe fortunate that carers didn't appear for a long while - I am sure she would have sent them packing. Mum is sort of okay (but denies it is happening) with the current arrangement of hot meals on wheels 3 times a week and a carer in for 30 mins at lunch and supper. One month into care and she has only just been prompted to take aricept but I think she is refusing it... Other things which are difficult is that no-one sees any need to tell me what is going on even when I ask! Communication from the Team is poor - Hot meals started, carers started visiting and medication started, all outwith my knowledge causing multiple confusion (Mum is very confusing on the phone). Anyway the main thing is that things are started - every local authority is different but be prepared to be surprised (nay disappointed) and maybe to go along with slow slow when you really want to raise the riot act but know you can't upset the delicate local balances from afar. On a practical note I was able to apply for Attendance Allowance for Mum (pretty much just involving her Dr and not Mum). As well as the AA at higher rate £67 a week it also increased her pension credit by just over £50 a week. Also got full council tax exemption (with help from DR) without having to get Mum too involved. These paperwork things are tricky to do without upsetting the sufferer but it can be done - help is available from Nurses, citizens advice etc. Another harrassment was having to get a microwave into Mum's house as the carers prefer to use prepared meals and aren't allowed (don't have time either) to cook as such.
I hope hearing about one experience is of some help.
Pebble

 

[pebble]

OOphs sorry posted twice

 

[pebble]

Replying as my Mum was first diagnosed in April with moderate AD, lives alone 200 miles away (in Scotland). This is my mixed experience - The consultant said Mum was really too ill to be at home but we should try a care package and called in his Old Peoples Team "as a matter of urgency". He prescribed Aricept but said a carer would be needed to give it to her once a day. I was surprised how slowly the wheels turned after that. One of his Team appears was the appointed Social Worker. Over the next few months people visited mum occasionally (community psychiatric nurse and occupational therapist mainly). A care assessment was carried out, all without telling me! - and I still don't really know what the package is (I have nothing in writing and feel I am sidetracked because I live so far away). (I am the only next of kin following the recent death of my sister, who lived near Mum.) Any way a care package started a full 5 months after the diagnosis!! Mum went through a very aggitated phase after diagnosis so it was maybe fortunate that carers didn't appear for a long while - I am sure she would have sent them packing. Mum is sort of okay (but denies it is happening) with the current arrangement of hot meals on wheels 3 times a week and a carer in for 30 mins at lunch and supper. One month into care and she has only just been prompted to take aricept but I think she is refusing it... Other things which are difficult is that no-one sees any need to tell me what is going on even when I ask! Communication from the Team is poor - Hot meals started, carers started visiting and medication started, all outwith my knowledge causing multiple confusion (Mum is very confusing on the phone). Anyway the main thing is that things are started - every local authority is different but be prepared to be surprised (nay disappointed) and maybe to go along with slow slow when you really want to raise the riot act but know you can't upset the delicate local balances from afar. On a practical note I was able to apply for Attendance Allowance for Mum (pretty much just involving her Dr and not Mum). As well as the AA at higher rate £67 a week it also increased her pension credit by just over £50 a week. Also got full council tax exemption (with help from DR) without having to get Mum too involved. These paperwork things are tricky to do without upsetting the sufferer but it can be done - help is available from Nurses, citizens advice etc. Another harrassment was having to get a microwave into Mum's house as the carers prefer to use prepared meals and aren't allowed 9don't have time either) to cook.
I hope sharing my experience is of some help.
Pebble

 

[Legion]

Hi

thanks for all the help, sorry I'm a bit slow replying I dont always get time to access the site. Its great to have people share their experiences and very helpful to hear what we may need to push on. I am constantly thinkg that there is some help out there that we dont know about and if we did and asked for it we woudl get it.

Just to clear up some issues:
Mum's GP is in the dark, he doesnt appear to have much communication with the consultant.

As far as I know no-one has said anything about dementia to Mum (certainly not me or my brother and sister) - isnt this something the consultant does? If Mum had cnacer it wouldnt be me telling her would it? Although she will need us to re-tell her as necessary. She does know that her memory is very bad and is worried about that. She talks fine about stuff until she is asked about what she may have done that day and then gets either upset or annoyed that we are quizzing her. She is fine when reminded what happened or when we walk through what she might have done to remind her.

Mum is more upset and worried (very anxious at times) than angry and isnt violent. When we started cleaning the house she talked about people interferring but accepted that we were helping (she did go off for a walk just to get out of the house while we were doing it - she always used to go for walks when she was annoyed).

I think she wants help but cant remember to do anything about it. She forgets to take her tablets sometimes and then will forget she is on them but when remembered will take them and want to keep taking them. She is very complient on that score and just needs to be reassured and reminded.

Anyway the consultant is due to phone today and I have these questions:

Has she been diagnosed?
What is the diagnosis?
Has she been told of the diagnosis?
Is she being prescribed anything?
How long is she to go the day centre (memory assessment unit)?
What do they do there?
Is she going to have an Active Daily Living assessment?
What will that mean?
What support from Social Services can we access and how?
How do we apply for support for family credit, council tax etc?
Has she declined any support offered? (part of Pebbles experience echoing here)
Can they send us any reports/keep us in the loop?

I'll let you all know how it does, the GP says the consultant is very good so I am hoping that the phone call is going to be useful but exxpect it also to be depressing as the future does not look very good for Mum.

Jon

 

[Legion]

ok, update.

The consultant was too busy to phone me but, after chasing the secretary, the nurse at the assessment centre called.

Mum has been diagnosed with mild to modertate alzheimers type dementia but has not been told this yet. The nurse has arranged for social services to visit my mum with my sister present (and not to contact before hand, apparently they can phone someone with dementia and ask if they need help - not suprisingly they get rebuffed and feel they have discharged thier responsibility). Once the social services have put support in place and Mum has been monitored for a bit they may start treatment with drugs (sounds like aricept). I have asked to talk to the doctor as I know there is a window of opportunity with this drug and dont want to miss it.

It sounds like the assessment centre does loads of things that I didnt know about, physio and OT assessments (she is being given a kitchen assessment tomorrow)and memory tests. Apparently she scored 26/30 which is a suprise as her short term memory is very bad.

I am hoping the visit by the social services will highlight that Mum is good at putting on a brave face but it crumbles after about 24 hours and that she does need help ... and they can provide some.

So, still optimistic... and a bit less in the dark.

 

[Legion]

Update

Hi

thanks to everyone on TP for all the support either directly to my questions or in answering other people's queries which also related to our situation.

After being diagnosed with AZ Mum was quite quickly put onto Aricept and attended the memory clinic twice a week. She hated it at first but then made friends. The senior nurse there was very good and kept me informed and up to date with anything that she felt was important (both good and bad news). I'm not sure if Aricept actaully made any difference to Mum but atleast she was being given a chance.

After a couple of months with Mum being very weepy the consultant put her onto anti-depressents which made a huge difference and appeared to have no side effects. Mum started to laugh again and for a while we thought that maybe she was just unhappy rather than had dementia. However, her memory remained very bad. She was recieving support from carers twice a day (nice people but they didnt always follow the medication instructions). She did start to become a bit more frail to the point that we were about to talk to her and the social workers about residential care with the thought that she would be better off surrounded by people (she did not enjoy being alone) and that if she went in early in the progression of the disease it would be a nicer transition for her.

Just before we did that though Mum died of a brain haemorrhage in her sleep a couple of weeks ago. She has escaped from a world that was getting more difficult for her and that can appear good but its still not easy for those of use left without her.

To those still on the path (and especially those new to TP) I would recommend taking full advantage of all the wonderful people in here. There is a lot of great advice, real support and love in this place.

with best wishes

Jon

 

[julieann15]

Dear Jon

So sorry to hear of your mum's death- I do hope you will continue to pop in here?

Love Julie xx

 

[jenniferpa]

She has escaped from a world that was getting more difficult for her and that can appear good but its still not easy for those of use left without her.

Dear Jon, I am so sorry to hear about your mother's death. I think this is so very true and will resonate with everyone who has lost a loved one.

Take care

 

[barking]

Iam sorry for your lost take care x barking