Stopping By.... Feeling Very Angry

[BeverleyY]

Hi All

Not been on a while as everything is pretty much the same with Dad.

Got a visit from Social Services today - they haven't shown their faces in about 18 months.

One of my wonderful neighbours has phoned anonymously to tell them they are concerned because my Dad goes to the cemetery too many times a day (they think sometimes 10..) which is ridiculous, but he does go 3 or maybe 4 times.

They also said they had heard me and my daughter raise our voice to him (he is deaf as well as having Alzeimers).

What do these people think it is like living with someone with this disease?

Do they think we should cage them up and not let them out? Dad has a GPS tracker and he hasn't (thankfully) ever got lost.

Do they think it is possible to ask someone to do something 20 times with them looking at you blankely without ever raising your voice?

Whoever they are (and it can only be one of about 6 houses) doesn't know anything about the measures in place (trackers, carers, day centres, me/husband working from home on various days a week).

I am so fuming. I feel like I want to write a long letter describing what life is like, and how it is so important to try keep Dad out of the care system until the point where we no longer can cope and shove it in every door.

Grrrrrrrrrrrrr they obviously think that he needs locking up and shouldn't be on the streets... walking to the cemetery to visit my dead Mum who we lost 3 years ago (Dad thinks she died about 8 weeks ago, hence him still locked in grief visiting the grave so much).

What would you do... write a letter and shove it in all doors entitled 'if you were the one that rang social services'... or just leave it?

Social services have no issue and think we are doing as sterling job with Dad.

Thanks.

Beverley

 

[Canadian Joanne]

Social services have no issue and think we are doing as sterling job with Dad.

It would be nice if social services said as much to the neighbours. You might suggest that to them. I realize they aren't allowed to say anything but if only....

 

[Christin]

Social services have no issue and think we are doing as sterling job with Dad.

Hello Beverley, I do remember reading some of your previous posts. I think the quote says it all I agree it is hard when the person you are caring for is also deaf. FIL once told us we didn't have to shout when we had told him something a dozen times and he hadn't heard. I do understand how difficult it it.

To be honest I would not put anything through anyone's door. If social services are happy then try not to let it bother you. Whoever made a complaint will no doubt be watching tomorrow and will see they have taken no action.

It is so sad for your father to go round in this continual grief though. I don't what the answer is there. We did go through a period where FIL grieved for a relative but thankfully it passed like so many other replays we have had.

Very best wishes to you all

 

[Jancis]

I am so glad for you that SS are understanding about this and think you are doing a great job. I'd like to bet it is an elderly neighbour who is watching, listening and misunderstanding.

 

[lin1]

Whoever they are (and it can only be one of about 6 houses) doesn't know anything about the measures in place (trackers, carers, day centres, me/husband working from home on various days a week).

I am so fuming. I feel like I want to write a long letter describing what life is like, and how it is so important to try keep Dad out of the care system until the point where we no longer can cope and shove it in every door.

Grrrrrrrrrrrrr they obviously think that he needs locking up and shouldn't be on the streets... walking to the cemetery to visit my dead Mum who we lost 3 years ago (Dad thinks she died about 8 weeks ago, hence him still locked in grief visiting the grave so much).

What would you do... write a letter and shove it in all doors entitled 'if you were the one that rang social services'... or just leave it?

Social services have no issue and think we are doing as sterling job wi

Beverly
Whoever they are the obviously dont know much about dementia ,
But (and I know this will hurt you somewhat n I dont wish to dothat )
Coz they dont know about dementia and all the measures you have in place , they were concerned and did what they thought right,

In reality they weretrying to be good neighbours ,

I do understand how hurtful this is for you , I would have been as angry and upset itif it had happened to me, as it so easily could have, in the days when mum used to shout and scream it must have siunded as tho I was trying to murder mum,when I doing things to mum like ,cutting nails , washing mum or doing her bad hand .

You , social services and we know the truth and reaally thats all that matters isnt it .
You are doing a sterling job . xxxx

 

[sistermillicent]

Hi Beverley,
I would say that it is best to maintain your dignity, and I think you might lose it if you start putting things through letter boxes.

Your feelings are completely what I would feel, and I would want to get one of those election cars with a loudspeaker on top, drive round the neighbourhood an shout out to everyone exactly what life is like.

But you have to think, does that make me the kind of person who would appear on the Jeremy Kyle show, and if the answer is yes, then don't do it.


It sounds as if you are very lovely and caring.

with love
Pippa

 

[BeverleyY]

Thanks everyone.

Am a bit calmer now - despite having a really traumatic evening.

Ironically, this morning we took in a parcel... for a neighbour. She came to collect it when I popped out. Only Dad was here, and there she was saying can you give me that parcel. Of course, he had no idea who she was or what she was asking for.

When I got in (I'd only been out 15 mins picking my daugther up) he started to go on about this woman coming for a box. So, I took it across to her. Oh, I think I confused your Dad terribly... uhm.. yes! Why did you come when our cars were not there?

He then spent the next hour solid saying every 2-3 minutes that a strange woman had come for a parcel made of wood and she shouldn't have taken it... etc. etc... he was so distressed!

I won't be shoving anything through doors..... and that includes Xmas cards now. I feel very bitter.

Thanks everyone.

x

 

[Tender Face]

Hello Beverly. Seen all sorts of sides to this (in child protection rather than adult protection) but it is a very difficult one ..... it’s a very personal view, of course, but anonymous referrals tell me something about the referrer (unless they really do believe they are in immediate danger themselves from being known to have raised concerns and possible repercussions in some terrible situations).

And before I say anything more I will tell you we have some ROTTEN neighbours and you have my every sympathy .... quite the opposite to those around mum who were my saviours ‘keeping an eye out’ for mum when she lived on her own ... it’s getting that balance between ‘keeping an eye out’ and being an ‘interfering busy-body’ which I guess is key? So yes, I can agree concern can be borne out of ignorance and someone having nothing better to do than twitching curtains (how do they know dad is visiting the cemetery 10 times a day – coz they have some problem of their own if they have nothing better to do than to keep count all day?????)

I would be inclined to ‘sit tight and say nowt’ and be proud you have made your decisions and they are validated by SS – then again I would also be very tempted to seize the opportunity at this time of year to pop a Christmas card through the doors of every neighbour (‘From Our house to yours’ might be a good sentiment?) with a little ‘round robin note’ about how thrilled you are dad is still living with you in the neighbour hood and how much you appreciate the concern of neighbours - and how it highlights the very season of goodwill that people care to look out for others – (you should spot which ones are quaking by then!) ...... and despite his deafness and needing to talk very loudly to him at times he still has his communication skills, and mobility to get himself out and about a lot throughout the day and more importantly to find his way home ... which given the difficulty presented by his illness are quite remarkable ...... oh, and should anyone wish to call in for a sherry and a mince pie, our door is always open ...... Wishing you a very Merry and peaceful Christmas blah blah“

Sarcastic, moi? You get the drift .....

Just so sad, if someone was concerned they couldn’t knock on your door first and discuss it with you? And only then get social services involved if they weren’t happy with your direct response? Goodness gracious – perhaps even see what they might be able to do to help in anyway?

Take care, love Karen, x

 

[Onlyme]

I agree with Karen about the round robin. That is just what I would do. Only the guilty would read between the lines and understand the barb. They wouldn't be able to prove it though without exposing their part in the issue.

 

[Margaret W]

The round robin is a good idea. It would be better if you could find the confidence to actually knock on doors, but if you don't know the people, then maybe not.

Y'know most people are reasonable, they aren't critical, the aren 't accusatory, they are most supportive, if they know what they are dealing with. Maybe your dad's neighbours need a bit of education. As do most people who've never experienced dementia. So I'd amend that letter slightly to explain that dad has dementia and maybe explain that one of the manifestations is that he doesn't recall how long ago your mum died (the neighbours will), and how he doesn't realise that 4 times a day isn't necessary. In other words, I give them quite a lot of information about his condition (course, I'd write an essay!) cos most of them won't have a clue. Thank them for their care and concern so far (never mind that none of them have shown any, but they will each think that someone else has), and yes, invite them for a mince pie if you think dad will cope with it.

People are mostly well-meaning. They just don't understand this illness.

Good luck.

Magaret

 

[trakand01]

Hi Beverley,

I just wrote out a long post but deleted it because I think I was about as wound up as you were!!

The basic points I was making are: I'm sorry you have neighbours like this, every road has them , but ultimately you owe them nothing (and they owe you an apology). I wouldnt put anything through their doors at all as I think you could easily accidentally come across in all manner of ways which don't actually represent you or how you feel.

How long has your father been living with you?

As you say it can only be one of 6 or so households - someone who's in all day, and (I am making a big assumption here) probably someone of an older generation (no offence meant to anyone) as the understanding of illness in the older generation is often quite poor (dating back 50 or 60 years when medical understanding was very poor).

I'm cynical by nature, but what I would probably be so so tempted to do would be to take a day off work, move the car and then return to the house, insisting Dad carries out his normal activity, and keep an eye out for twitching curtains

 

[DeborahBlythe]

Devils advocate here. Ignore if it will pain you.

Hi Beverley, I'm really sorry you are feeling so wound up. I would be speechless and very hurt and wanting to go and thump someone, if it was me.

You have nothing to fear and nothing to worry about whilst SS are so supportive. And we all know you love your dad to bits and understand what you are going through..

I think, hard though this will sound, that Lin1 has made a very good point. They thought they were being good neighbours to your dad. If this was someone else's dad, if it was some other elderly gentleman or lady, you might think slightly differently.

Wrongheaded though they obviously are in your case, I can't help thinking that it is better for neighbours to be wrongheaded and concerned a few times than to risk ignoring something that might have resulted in neglect or abuse of a person with dementia.

When things go wrong for elderly people, it isn't just the relatives who come under a spotlight, it is neighbours too. I can think of several sad stories in the press where elderly or vulnerable people have come to grief in shocking ways and the press always ask 'Why didn't the neighbours take an interest in X or Y? How did we, as a community/society allow this to happen?'

One day, those same neighbours may spot something about your dad which will help you. Don't ask me what.. maybe someone approaches him in the street, maybe he drops something, maybe .. oh, you know, the ordinary stuff that can trip us up.. Having a watchful pair of eyes on your side would be such a boon to you.

If you can dig deep and befriend them, I can't help thinking you might do yourself and your dad a favour in the long run even if right now you would rather poke their eyes out. Take a deep breath and relax for the moment. You are a very special daughter to your dad and I hope I haven't written anything that upsets you. I wish you every success and strength in caring for your dad and for yourself too.
Love Deborah x

 

[christine_batch]

Hi Beverley,

From the very beginning of loosing your Mum and caring for you Dad, you have put into place so much that your Dad had some form of life.

Whilst you were doing all everything for your Dad, you were still mourning for you Mum.

Raising young children as well, I have always admired what you have done.

I know it is hard but your neighbours are not worth it. If one came to your door to borrow a cup of sugar fill it with salt.

Take care of yourself.

Love from
Christine xx

 

[Christin]

Hello Beverley, I really do feel that's its not worth falling out with all your neighbours. As others have said, the call may have been made with the best intentions. It could be good to have neighbours who watch out for each other, especially in this very cold icy weather. Please don't spoil what could be a very relationship with them because you are angry with one.

 

[JackMac]

crikey, deaf or not...........I am sure we all raise our voices!!!!! I raise my voice at my 3 year old!

Maybe pick out one of the most 'gossiping' neighbours who you know will repeat it and tell her whats going on and how devastated you are at someone saying this when you are caring for your dad. This is all hard enough without people making accusations.

 

[BeverleyY]

Goodness.. so many replies. Thank you all so much.

I like the idea of the round robin actually... hint of sarcasm, just up my street!

Dad has lived with us approaching 8 years now...!!! So, a long old time now.

I did bite the head off a neighbour yesterday - crossed my mind it was her. She'd come to collect a parcel that we had taken in - when neither of our cars were here!!! Did she confuse my Dad... oh yes, he ranted on and on and on for about 2 hours solid about a strange woman coming to the door to ask for parcels!

I suggested maybe it was her that called SS after I mentioned it and she then asked about 20 questions, when, how, why, what, what did they say etc...etc...! This is the woman who when her Mum got MS when she was late 40s early 50s was put into a home swiftly and remained there until she died. She told me... it would have been too much for her Dad or her and her sister to attempt to care for her.

Hmmm... people eh!

Thanks again for all your comments and replies.

What I hadn't mentioned, is in the last 9 months I have moved into a different role at work and am now travelling extensively for my job (I did before, but this is now weekly). It's all a new juggle and despite me not being here one or two nights every week my beautiful, wonderful husband takes the burden on his own. My girls are now 10 and 16 and help so much. Quite remarkable really when you see people that say they can't do this, can't do that because of jobs, kids etc.

Rant over.. again.

xx

 

[jimbo 111]

Your first post was so full of anger and frustration that readers could understandably feel it ( know I could)
If only your message was public so that people who are not aware of problems that carers face looking after people with AD would be more understanding I know you have already been given good advice by other members ,but would you consider writing a letter (using an alias) to your local paper ????
Ifeel for you and all the other carers who are under constant stress trying to do your best for those you love so much
God bless
jimbo111