what do i do?

poppet

Registered User
Aug 3, 2007
70
margret, thank you, yes i am going to gloss over as much as possible now.

update;

my husband came home yesterday from a day at work followed by the usual pop in to mil...to say he was going to email his broother to say that an assessment neds to be initiated ASAP as she is an accident waiting to happen...mmm wheere did i hear that i wonder...!!! anyway, i have downloaded and printed off the factsheet on hallucinations which my husband read and we agreed this might be a good one to send to bil to read...we await his response.

it seems to be moving in the right direction though so thanks to all advice but most of all the support.

xxx
 

blue sea

Registered User
Aug 24, 2005
270
England
Hi poppet
Glad to see you're all pulling together as a family. Once you have a diagnosis, a clearer path will emerge. You obviously all care hugely about your mil and want to do the best for her. Good luck with it all. Keep posting as and when you want some support.
Blue sea
 

poppet

Registered User
Aug 3, 2007
70
hi blue sea,

thanks, yes all is hopefully going move forward. bil is going to phone SS today an start the ball rolling. not sure what kind of help is available to someone like mil so if ayone has ideas of what help she might need/get i would be glad to hear of it...

will keep posting as i have found this an invaluble bit of private support just for me!

finally, we are off on a much needed holiday on saturday and mil is off for 1 week of that to bil so should be able to relax for the first week at least!

thanks again for all your support

poppet
xx
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Poppet,
Such a sad and difficult time for all of you - and not least for your poor Mother in Law who is the sufferer.

I wonder if the specialist was a mental health specialist rather than one who specialises in dementia?? The reason I say this is that, when our family member had a mental illness, we were told not to collude with his hallucinations. The opposite advice applies to people with dementia. The person with dementia can no longer think rationally or be logical so insisting they are treated in this way is just cruel.

For the person with a mental illness, I think the feeling is (and I'm only too happy to be corrected by anyone who knows more than me - which is probably most people!!) that the mentally ill person is only irrational and illogical because of the illness and will return to being logical and rational once the illness is controlled.

Even though people with dementia can have periods of lucidity, their underlying mental abilities are deteriorating - so we can no longer expect them to function as they once did.

As you say, you do not have a definite diagnosis yet, but it is not too early to push for assessments and interventions by Social Services that might help.

The issue of Care Homes is a very vexed one for all of us. Ideally we would hope it would never happen for those we love, but sadly, it may be a necessity. It is important, I think, not to fall into the trap of saying "I'll never put Mum (Dad, whoever) in a home" because it only makes it that much harder if it becomes a necessity. The same applies to promises to someone "never" to put them in a home. We cannot read the future and we may have NO choice when the time comes.

On the reassuring side, many of us have found the Care Home issue is a positive experience (altho' often not in the first few weeks) rather than a negative one. If or when the time comes for such a decision, there is much that a loving family like your's can do to make it less traumatic.

It is very difficult for partners, children and children's partners of people with dementia. It is very important to work together to support each other as well as the sufferer. It certainly sounds as if you, your husband and his brother have the right sort of relationships with your MIL and each other to make the best of a bad situation. Sending you all every best wish for the future.
 

blue sea

Registered User
Aug 24, 2005
270
England
Enjoy the holiday. You all need a break to refresh yourselves. Try really hard not to worry while you're away about the future.
Blue sea
 

poppet

Registered User
Aug 3, 2007
70
Nell, thank you for your support and insight...i am not sure how 'well we are working together' but we sure are trying!!!i guess that is the main thing eh?

i saw a good link on care homes/services from another thread...didnt even know they were out there!!! their web address is below if any on is interested

http://www.csci.org.uk/

blue sea...will definately enjoy the hols will be hovering on here til we go though;)

poppet
xx
 

ponsaelius

Registered User
Aug 6, 2007
2
central scotland
hallucinations

Hi Poppet
Cannot believe the 'professional' told you to contradict her! That m ust b e so upsetting for you both. M y husband suffered severe hallucinations in early stages of his AD which was very upsetting and quite frightening actually. I found it best to 'humour' where possible and tried distraction to good effect. We also managed to find a suitable medication which helped control the hallucinations tremendously
Take care, can really sympathise with you
 

poppet

Registered User
Aug 3, 2007
70
thanks for the input...

bil got the SS to phone mil today has managed to sort a few practical stuff like grab rail and stool for the shower meals on wheels and initated finacial advice...so making progress...
although mil is not fully accepting help, she is willing to 'go along' with some of it. the SS are going to arrage a full asessment soon which will be good.
another situation happened yesterday where i had a 15 min conversation where she didnt let me get a word in about 'the others' ...she then talked about moving to a flat to get away from them...i took this opertunity to sensitively probe about the whold moving issue and made indirect suggestions that maybe she might find that a place with more company would be beneficial to her...she was quite receptive to this...i spoke to both my husband and bil and we all seem to be agreeing that some sort of warden asst or sheltered accom might be the way forward at the moment...but we are playing it carefully as we are unsure as to what might happen over the next couple of months with all these assessments...

on a brighter note we packed for hols today...nearly there:D
 

Gill W

Registered User
Jan 31, 2007
190
Co. Durham
Poppet,

My family have had very similar problems as yourself, my Gran has Alzheimers and is now late stage, by my estimation.

Our way of getting my Gran to accept help from other sources was to tell her that to help us fulfil her wish to be at home for as long as possible we needed to get other people in to help. We live a distance from her, and can't be there 24/7.

We've gone through lots of "heated discussions" about it all, and have had hallucination, hearing voices, forgetting people are deceased, the lot. One of my first posts was asking whether we should humour Gran on the hallucinations, and the response was a resounding YES, and it does work. On her way to hospital yesterday, Gran asked me what would the little boys do for the tea, and I had to tell her that we would take care of them for her while she wasn't at home. Gran too has made meals for them, and she doesn't understand why the meals aren't eaten and why the lads leave before she's got it ready for them.

Security wise, we've had her wandering and have had to have an alarm system fitted via SS to alert us when she escapes. We've had leaking gas from the fire, and the cooker and have had to have both appliances isolated so that she can't use them at all.

Basically there is lots of help available, but you mustn't let SS know that you can manage all the time with this, or with that, or the other, as they'll expect you to continue. Start as you mean to go on and tell them you want all the help that MIL is entitled to. Kick up until you get it. I was advised to do this by the others on TP, and it works. My sister and I left them in no doubt as to who we would hold responsible if anything happened to Gran when they hadn't provided for her.

Keep badgering Poppet, never let up.

Gill
xx
 

poppet

Registered User
Aug 3, 2007
70
gill thank you...some very wise words of wisdom and support...it really is reassuring to know mil is not the only one with these symptoms and that there is help, advice and support out there...

grannie g...will do!

going to take a breather now and plunge back into action on our return...i hope to be back on posting some more positive news...thanks again all at TP!!!:D

poppet
xx
 

poppet

Registered User
Aug 3, 2007
70
hi all at TP!
well back from a cold, very wet and windy holiday (very british you know!!!). feeling quite refreshed and 'bang' straight back into it all again! oh well...

things are slowly moving on...my bil has initiated several things...SS are coming to do an assessment, pension services are coming to help with attendance allowence application, SS have ordered things like grab rail and stool for the shower... he has also taken her for the MRI scan for which we await the apointment to discuss the results on that later this month.

on top of that he has bought her a box for he tablets and a clock that at the press of a button tells her the time, whether it is morning or afternoon, the day, date etc...great! only problem is that if SHE thinks it is monday and the clock says different then she thinks it is the CLOCK that is wrong not her!!! ??? the tablet box is also a good idea but as she said to us that now bil is not around she wont bother with it. it seems she does and says alot of positive stuff to him that misleads him into thinking things are goingbettter than what they actually are. then my husband and myself are saying what is actually happening and he does not see it that way. this is very frustrating and makes me feel resentful of him and his 'lording it' over her care. he is the one doing alot of the 'organising' of her care but we are the ones doing it!!!i feel that we are at his beck and call and we cant do anything without his sayso. :mad:

MIL is still 'all over the place' not knowing what day it is etc, sleeping and waking at various times of the day and night, very confused over lots of things, has 'the others' there permenately, cooks for them...they eat very well!!! got round there the other day and she had a full spred on the table about 3pm and offered some to us as 'nobody' was eating anything:rolleyes: we now 'skate over' these 'others' issues. this makes things easier in most cases. i still feel she would be better in some kind of supported accomodation as does my husband now, only we dont know how to get mil to come round to this idea. she is determined not to go into a home and is not in need of people dressing, showering her.

i am realising that i am now rattleing on a bit...and could do just to get it off my chest but hey things are moving along, this is the positive part...

poppet
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,789
Kent
Dear Poppet,

You are trying your best and seeing it as it is, and it looks as if your BIL is trying his best too, but not seeing the true picture.

I hope you manage to persuade your MIL she would benefit from some more help and support, but I know from personal experience how difficult it is. She will fight for her independence as long as she possibly can, and does not realize how difficult she is making it for you.

Take care xx
 

poppet

Registered User
Aug 3, 2007
70
thanks, grannie G.
does anyone have any advise on getting our loved ones to realise that the help is there for their benefit and that by digging their heals in is only making things more difficult for us?
 

Helena

Registered User
May 24, 2006
715
Sorry but there is nothing you can do in trying to reason with someone with AD or VD

The effect of the illness on their brain means they cling on to independance for dear life and any effort we make to help is effectively met with stubborn refusal/pride

Personally I think we are wrong to interfere at all even for their safety
I have regretably come to the conclusion we should simply let nature take its course

If we went back 50 years we would not have antibiotics to treat this that or the other infection

If they had not tried to treat my Mothers pneumonia she would have slipped away peacefully ........ instead she was forced to endure 5 weeks of extreme confusion, incontinance, C Diff and all that goes with renal failure

I know what death at 90 years old she would have insisted upon
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dear Poppet

I realise that a lot of this depends on the prior relationship you had with the person in question. In my case, my mother was always prepared to go along with whatever I decided, which made it a great deal easier. I'm not saying she didn't have periods where she wouldn't argue the toss about it, because she did, but in the final analysis, she understood that whatever I had planned was for her own benefit, even if she didn't much like it, because having known me for 51 years, she knew that I would do my best for her. Well trained, my mum :D Of course, you can't go back and do it over again: if the relationship isn't like that I described it is going to be infinitely more difficult.

One thing I did find (and this might back fire with some people, so think about it) was that it was inadvisable to give choices, unless both choices were equally acceptable. For example, a choice between assisted living facility A and assisted living facility B was fine, but no choice as to whether there was an assisted living facility in the future. If I left any wriggle room then wriggle she would. It's a little (well a lot, sometimes) like managing a recalcitrant 3 year old.

Best wishes
 

poppet

Registered User
Aug 3, 2007
70
thank you, yes i think if it were totally up to me i would be quite direct about it by kind of saying 'you need this because of ...and ...will benefit you and make things easier for you and us'. but unfortunately although it is affecting me directly i have no control over her destiny. so my problem is to try to get my bil to see that this needs to be put into place. she seems to take note of what he says and not my husband. her relationship with all of us has been good but she is a fiercly independant woman and will defend that till the end i have no doubt. i feel i have a long and difficult task which might result in a 'crisis' before a move can or will be initiated.
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Poppet,

Firstly, I have a lot of sympathy for Helena, because her situation with her Mum was a terribly sad one, but I cannot agree with her. Just letting nature take its course, when someone has reached the stage your MIL has, is tantamount to neglect and certainly would not be taking "duty of care".

As for your BIL, it is very hard when one member of the family does not see things as others do. I have no doubt you and your hubby have the true picture because you do most of the "hands on" caring.

In my family, my brother acted like a "tragedy queen" when M&D were first going into a NH - carrying on about us "abandoning" our parents!! :mad: Fortunately my 2 sisters and I knew our parents were in agreement about the situation, so we were able to stand up to him. Your situation is much more difficult.

Could you sit down with hubby and write a list (quite a long one I suspect!) of reasons that your MIL is not safe in her own home and then present it to BIL for discussion?? If he is still of the opinion that MIL is OK, perhaps you need to say you will withdraw entirely from her care so he can see the true picture. . . ? Sounds very hard and is truly "tough love", but there may be no alternative if BIL is stubborn and MIL is too! :)

I believe family members cling to the belief that things are "not too bad" long after they are at crisis point in some cases. My sisters are the salt of the earth and there is NO way I could cope if I didn't have their support (and Mum is in a NH!), but even one of my sisters took a VERY long time to recognise the true nature of Mum's illness.

Like your BIL she kept coming up with "solutions" to problems. The trouble is, people with dementia cannot learn new ways to do things. Even simpe things (like the pillbox) are beyond them. They don't admit this of course. They just say "Oh, I can't be bothered with that!" or something similar!

It seems your BIL does not yet realise that such behaviour is part and parcel of the disease. "Solutions", sadly, just DON'T work.

I'm thinking of you and wishing you success in sorting out this most difficult phase. Believe it or not, altho' they don't get better, it does get easier in some ways. In many ways I think the phase you are at just now is the hardest.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Nell said:
Like your BIL she kept coming up with "solutions" to problems. The trouble is, people with dementia cannot learn new ways to do things. Even simpe things (like the pillbox) are beyond them. They don't admit this of course. They just say "Oh, I can't be bothered with that!" or something similar!
My goodness, that rings a (very loud) bell. If there was anything that my mother couldn't do for herself (mostly because she had forgotten how) it would be "too much bother". I'm sure it WAS too much bother, becasue she couldn't remember the rationale for doing whatever it was OR how to do it, but it's very indicative.

Ditto to Nell's comments about "solutions" as well: there is no solution to the actual problem, which is that the person in question has dementia, and no amount of well-meaning solutions are going to solve that problem. It is a learning curve though: for a while there I thought that there might be "things" that could help my mother, and even when I came to recognise that there weren't, it didn't stop me backsliding on occasion. Radios, clocks, pillboxes (all of which speak) were absolutely no use whatsoever.
 

alfjess

Registered User
Jul 10, 2006
1,213
south lanarkshire
Nell said:
like your BIL she kept coming up with "solutions" to problems. The trouble is, people with dementia cannot learn new ways to do things. Even simpe things (like the pillbox) are beyond them. They don't admit this of course. They just say "Oh, I can't be bothered with that!" or something similar!

It seems your BIL does not yet realise that such behaviour is part and parcel of the disease. "Solutions", sadly, just DON'T work.

Hi Poppet
I am one of those people who kept looking for and trying solutions. (read earlier posts)
Unfortunately, just as soon as we found a solution to one problem, there was a new problem to deal with. eg. heating, food, bathing, toilet, stimulation etc. until we ran out of solutions.

Now my parents are in a care home, maybe not happy, it is still quite early days, but safe

Take care
Alfjess
 

Forum statistics

Threads
116,112
Messages
1,698,194
Members
66,930
Latest member
TTA69