Help (and a listening ear) needed for me caring for a relative with Alzheimers.

[Apatosaurus]

I hope this is the right topic for this. I know this is going to be a bit of a whinge (forgive me as I unburden) but I do really need to advice about what to do with this new situation I have been thrust into.

Dh's Nain (she is Welsh) has Alzheimers. She has been diagnosed for about 2 years now and I suppose her current diagnosis would be 'moderate'. She lives alone and has recently started having SS carers in twice a day. She is a fit as a fiddle (probably much fitter than me). The carers are to check if she is taking her medication, is eating regularly (she was forgetting to eat) and the fridge is stocked, house is safe etc.

She lives about 20mins away from us.

Her only son (DH's dad) and wife (my FIL/MIL) live in Germany (army).

Our situation is I have 2 DD's (3yrs and nearly 2). DD1 is in pre-school 5 mornings a week, DD2 is at home with me full time.
My parents live nearby. My father has severe MS, and is fully dependent on my mother/carers for all his needs. I offer support and assistance to them regularly but am not needed in a carer capicity per se.

My DH is a GP and is out of the house from 8am-6.30pm plus does evening & weekend shifts.

Life is busy but generally good (I'm not feeling sorry for myself) !

So this is the new situation. Since the carers have been going in to DH's Nain (about a month now) I am getting on average 2 calls a week from them with requests for me to sort something out.

Today was a classic (as I was out it was on the answer machine):
'Hello Mrs X, we can't find your Nain. The dog is in, but she is not. What would you like us to do?'

I picked up their second message to say that they had found her (she had been at Netto's by herself, she is meant to go with them now).

If I had been here for the first call then I would have felt obliged to load dd & dog into car and go out and hunt for her.
Other requests have been to sort out medication (lost or taken accidently in overdose), SS form filling, attendance allowance, carer time changes, visits to GP for dog bite/dressings etc etc.

I really do not feel that at this current time that I am able to deal with this sort of thing, plus two infants plus my disabled dad.

DH is the 'named' first person contact but as he is never here he can hardly do anything can he?

So it's me...or no-one (well that's how it feels).

Does anyone else have experience of this?
Do we need to have a meeting with the SW/OT to sort this situation out...is there any solution to it at all?

I don't know. Don't want to feel resentful of Nain or DH's family but that is how I'm starting to feel.

Hi
I haven't been in an situation exactly like yours, but didn't want to let your post go unanswered.
My dad has Alzheimer's, and I know how hard it is, and unfortunately it only gets worse.

Reading about your situation I would say that you really need to sort this out somehow, you can't and shouldn't be expected to deal with day-to-day issues like that IMO. I don't know how this can be resolved, but I think you have every right to feel that this is too much.

So I hope you can find a satisfactory solution.

Hi
I haven't been in an situation exactly like yours, but didn't want to let your post go unanswered.
My dad has Alzheimer's, and I know how hard it is, and unfortunately it only gets worse.

Reading about your situation I would say that you really need to sort this out somehow, you can't and shouldn't be expected to deal with day-to-day issues like that IMO. I don't know how this can be resolved, but I think you have every right to feel that this is too much.

So I hope you can find a satisfactory solution.

Hi i really symathise with you.i work for the alzheimers society so i really do empathise with you and dh.
that said though,things are only going to get worse from here so you need to sort something out soon.what contact have you had with ss or cpn up until now? don't know what care is available in your area but did she have a thorough assessment in hospital when she was first diagnosed?
i'll help you with any-thing you need.

Thank you emkana. I really needed to hear from someone that I wasn't being unreasonable to try and change the current situation (I can't bear the AIBU topic anyway!).

BC I was a health professional and did lots of work with the elderly so I have some experience of how the condition develops. It is really such a dreadful disease, and I suspect Nain will be with us for at least 15 more years...she has no other health problems and also comes from a family of long livers (100+).

Sorry that your dad is also a sufferer (life truly does suck sometimes) and it seems so common that the truely lovely people tend to get the short straw.

Thanks again.

Thank you ash.

Nain is seen (6 monthly I think) in a memory clinic where she is reviewed by the consultant and OT. She is on some extraordinarily expensive medication (name escapes me now) which I personally am unsure about as there seems to be a continuous deterioration in her memory and ability to cope independently.

She does not have a CPN.

The main points of contact seem to be GP (pretty bloody hopless as gave her full bottle of antibiotics to treat dog bite to take over 2 weeks, and suprise suprise she took them all over the space of a day and ended up with severe diarrohea , OT and SW.

There is also this care company who sends out the daily carers (and keep calling me)

I have never met any of them (which is ironic as I'm the one who seems to be dealing with all the problems). Dh has spoken to GP (re crap prescribing) and MIL comes over for memory clinic appts.

How do I go about co-ordinating a meeting with all these people (if that is what is needed)?

Do you think they are putting more pressure on you than they would on other carers simply because they know your DH is a GP??

Could they not contact him via his mobile (or leave a message if switched off)?

I suspect you may be right themoon (the down side of being married to a doctor maybe?).

DH has his moblie turned off for surgeries. He checks his messages at lunch times, but also has to do home visits, referrals,meetings etc etc then. He is deeply devoted to his grandmother as I suspect would up sticks and rush over to deal with any situation immediately, but that is hardly ideal either as he has a resposibillity to his patients during the day as well.

gp's are crap when it comes to dementia,you won't have any luck there.in our area all sufferers have a cpn who is usually the first port of call.otherwise,the social worker can arrange any meetings.you may need another care agency-some are much better than others.that said,in the same situation i have done the same-rang the n.o.k if someone is missing(and it happens a lot)
have you been offered any day care services for her or respite?

sorry if the gp comment has offended you or dh but at the end of the day they are general practitioners and not much use where dementia is concerned.
meant to say r.e the dementia meds-they only tend to work in early onset dementia and are more succesful with younger patients.they don't work for everyone and in many cases make things worse but i'm very surprised she has been given them-funding is very limited and are not given out a lot in our area(that postcode lottery thing again!!)

Day care offered but rejected (she is an ex nurse and HATES anything institutional/old people sitting round in circles etc).

Respite not offered but I suspect would be greeted with a NO!

FIL/MIL take her to Germany for 2 weeks, 2-3 times per year. This is nice for them and us but complteley unsettles Nain on her return to the Uk, and I suspect makes the confusion worse.

Apologies, dd2 has just woken up so may not be able to respond to any further posts now, will check back tonight.

Thanks to all for your help.

ash no worries about slagging gp's off...he's not reading this anyway! To be fair to him (and them) training/education of dementia is pretty rubbish. He's on a steep learning curve and through our own personal experience is somewhat better as undrestanding the need of patients with dementia.

re the Aricept (sp) do you think she should come off it? She just scraped in before the NICE guidelines came out and is just 'on it' now ad infenitum...I wonder if the 'grandson is a local GP' is also a factor in her getting it.

Not fair I know especiialy if it is either useless or making her worse

better go dd waving books under my nose!

Day care is fab-that's what i work in. 9/10 initially don't want to come but after a couple of weeks they love it.again some are better than others.we have had people come to us as a last resort after trying other day centres that they've hated then come to us and loved it.we always encourage them by calling it a 'bingo group' or fun club rather than saying it is a day centre for people with dementia.
IME,once dementia is quite bad the worst thing you can do is take them on holiday,it unsettles them.so maybe you need to look at respite,unfortunately she may not like the idea but you all need a break.

come back later and we'll chat more if you like.i'll be on tonight.

re,the aricept-have you noticed an improvement at all or decline,how long has she been on it?

aricept has worked wonders on some of my clients,life has become bearable for their carers and it has dramatically improved their quality of life.out of all of our clients though only around 2% take a dementia drug-mainly down to NICE but in other cases it has been ineffective or made the client worse.
insomnia,restlessness,agitation,tearfulness,dry mouth are among the many possible side effects and for some not worth taking the risk.

hi again ash,

re aricept, I think she has been on it for about 18months now. Personally all I can see is a deterioration in her memory/function, but I thought it worked by slowing the deterioration rather than improving/stopping it. I would value any advice you have on that. re side effects she is regularly quite agitated/restless (she is very frightened of being burgled/an intruder, so there is constant door locking and checking, curtain closing etc) i took this as being a normal (although very upsetting) symptom of the disease...could the aricept be making her worse?

When she goes to the memory clinic (MIL reports) she just has a chat with the consultant & OT which makes me wonder how they are assessing if there have been any objective changes (in my days MEAMS was about but I'm sure there are new assessments to assess dementia). Nain always, always says she is fine (apart from the fear of being burgled she is an extremely jolly person) so I can't really see how her consultant is getting a really great picture of her current function.

I think that day care would be great, she is a very social person (used to be a Cathedral welcomer until last year), but as I say she doesn't like 'institutional' care and hates 'strangers' knowing she is out of the house in case it gets robbed. Not sure how DH and I could go about encouraging her to give it a try (she would instantly forget the conversation anyway......)

sorry so long and so many questions.

bump for ash if you're still about tonight.

i'm here-sorry it's taken me ages to get kids settled tonight.

the symptoms you are descibing-it's hard to say as they are very typical of dementia but also a side effect of the drugs(thats not much help is it!!)the meds,as you say,slow down the dementia and prolong the inevitable but it if these symptoms have started since taking the drugs i'd say they could be the cause iykwim?
dementia sufferers are often very obsessional as you describe and can have dilusions,accusing people of theft etc.it is very normal,i'd say around 80% of my clients show this behaviour.
could you just not mention the day care to her,set it up and then hope for the best when they call to collect her?
i go through it every week-a client forgets they are coming or doesn't know and i just call,put on my nicest smile and say"hello there mrs ** i've called to take you to the lunch club to get you out for a few hours,your family know you are coming,it'll be a break from the housework"that kind of thing and it works!!

Mini Mental Status Examination is what's used now-can't tell you a lot about it as it tends to be done by the cpn's in our area but its basically questions like,count backwards from 100,what date is it,that kind of thing.
i know what you mean about them not seeing the true illness,how on earth does the mmse tell them if a client wanders,is continent,can feed themselves etc but that is why it is vital to have good communication between all care-givers ie cpn,social worker,gp and of course the most important people are the families-only they can give an accurate description of how the illness is progresing and it is those who shout louder who get most help.
one word of advice about day centres-it is important you chose a one that specialises in dementia(try the alzheimers society website for your local branch)as most day centres cater for all illnesses and the staff do not know enough about dementia to give the right care.whereas we have to go on regular training courses on dementia awareness,challenging behavior,activites for clients with dementia,the list goes on.

That's a really good idea, especially if I or DH gave her a call shortly before the transport came to pick her up. It's difficult to know if after a few visits it might 'sink in' to her background memory IYKWIM or she would need a call every time. She is very resistant to leaving the house if a 'stranger' is taking her (ie she won't do taxi's ever) but a 'hospital' transport bus might be Ok...it's difficult to know.

Are there any reliable assessments in dementia that could be done to look for changes? If I suggest them to DH then he could chat about it with the consultant (drs together etc!)

sorry x-post!!

Will definately check out the alzheimers web site.

So agree with you re shouting loud! Currently not much shouting at all . My parents in law are extremely loving but as they see her so infrequently are not really able to spot any changes in her behaviour. They also never do 'confront the health professional'..I had to get DH to chase up her GP re the antibiotics fiasco!

So should DH and I speak to her OT (sort of lead professional, or the carers directly re what to do in the case of a, b or c happening?

we use a local; bus company for our transport so it's great- doesn't have "ALZHEIMERS SOCIETY" written across it or anything,or hospital transpot just a plain white transit bus so great for those that don't want to be associated with dementia.

there is always a carer on with the driver but as i say,most forget every week they are coming anyway.some know they know me from somewhere but not sure where and then we have a few who even remember my name every week-it's strange how the condition affects people so differently!

Thanks ash for your help again, will have a chat with DH about your suggestions tomorrow.

Better go to bed now!

it's hard because she probably gets a different carer going in every day or i would suggest calling round nairns house when you know theres a carer in to have a good chat.i suggest the social worker rather than occupational therapist as it will have been ss who arranged the care to begin with.again with day care/respite ss will point you in the right direction.

do you have a book for the carers/checklist with important info&numbers left handy(on the fridge usually a good place)?
also,if you don't have one already a keycode is a good idea for the carers to use.

Hi again ! More questions...will perfectly understand if you don't want to put your professional hat on over the bank holiday but this thread has been increadibly helpful and supportive for me.

Spoke with DH last night re aricpet, he agrees that it doesn't seem to be helping much (wasn't aware of side effects) and thinks it might be a good idea for him to go along to next memory clinic appt with Nain to chat about her continuing on it long term. He broached the subject with her today and she is happy to come off them if the consultant says so (very much of the gneration 'doctor knows best')!!

We checked out the carers communication book today...and hundrends of written messages ALL over the house. From Nain to herself (about 90% of them), from carers to Nain, from OT to Nain, from SW to Nain, from memory clinic to Nain, from Gp to Nain etc etc. No wonder she's so bloody confused and agitated about all these people telling her what to do. Complete chaos!
DH and I went round and cleared out all the out of date ones (filled 2 plastic bags full of reminder notes ).

Nain tends to hide things so we are thinking about getting a folder holder and attaching it to the wall so she can't hide the carers file. We are also getting a lockable meds dispensing box so she can't hide her tablets...will try to fix that to the wall too.

She has calenders everywhere (one in each room) all with notes/instructions/reminders on. Do you think that is a good idea? She has a clock which shows the date on in the kitchen but by the time she looks at it and has gone into the sitting room she has forgotten what is says. Not sure if they are a help or an anxiety provoker TBH.

Will broach the subject of day care in June when MIL is here, she might be happier going if her beloved DIL accompanies her for the first few times.

sorry that's so long.

Hi sorry,didn't get on mumsnet y'day.
sounds like you are doing all of the right things tbh.the reminder/calender thing can be a waste of time once dementia is a little more advanced,as you say it can just provoke anxiety but it's hard for me to say without meeting nairn.all clients are very different and some benefit greatly from this type of thing.after almost 6 years in this job i am still fasinated at the different ways this illness affects people,no two clients are the same.

i don't claim to know everything on dementia but i am very happy to help with all i can,i do love my job and feel greatly for the families and if i can help people in anyway i do so gladly.