Why does everything take so long?

ems80

Registered User
Jun 4, 2013
16
0
Hi

I suspected that my mother may have a mental illness nearly 2 years ago now, it was hard to be sure as there has been so much going on in that time with both an uncle and my grandmother passing away in that time period. So some things were put down to grief/stress until I found out last November that she was days away from being repossessed (on her 60th birthday) due to a mix up with the jobcentre and her being confused about payments and going into arrears. She never appeared at the court hearing so repossession was granted, luckily the solicitors for the lenders were really good and I paid off the arrears and sorted direct debit for future. I'm still waiting on the LPA registration to come back.

Now since then it's taken me 3 trips to the GP to get her refereed to a consultant who took 2 months to sort a scan, the scan showed obvious frontal brain cell loss that was on 8th April and told that she would need further cognitive tests to get a better diagnosis. Only after complaining last week and using the 'formal complaint' line have they arranged this next test for 15th July. How on earth can it take this long?
My biggest worry is that I live a 100 miles away from my mother and I'm self employed with a family and mortgage. She seems utterly fine around me and family, but neighbours have been contacting me for months saying she's verbally abusive (sometimes to nobody), aggressive and sometimes moves bins outside their homes and has been seen 3am in the garden. Neighbours have been very understanding, but not sure how long it will last. She won't allow any nurses or doctors into the house, so I really don't know what to do as we don't have enough room to bring her to our house and I can't live with her. I spoke to social services but seen as she can take full care of herself and she won't consent to visits they can't do anything.
Any suggestions would be appreciated as I feel totally lost as what to do, even the diagnosis won't change anything I doubt.
 

Jess26

Registered User
Jan 5, 2011
970
0
Kent
I'm very sorry, I don't have any advice to help you. I just didn't want you to feel ignored.
Sorry you find yourself in need of TP but welcome. There is usually someone amongst us who can help/advise
 
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ems80

Registered User
Jun 4, 2013
16
0
Hi jess and Peggy, thanks for the bump and sorry about the rant just such a frustrating situation. Maybe it's time more guides were published as I have found lots of good info on TP which has been good. Also speaking to a friends mother who her mother has been diagnosed with dementia for several years has been a great help.
 

ems80

Registered User
Jun 4, 2013
16
0
Mini breakthrough yesterday, managed to get her to allow a nurse in to visit her!
She's been on risperidone for the past 2 weeks and it seems to have really relaxed her. The visit went well and also managed to arrange a follow up before her diagnosis in July too without me being there, obviously not counting chickens yet though but it's a big result.
She has filled in a questionnaire for the DWP and returned it without me seeing it, so I'm not sure what may be on that, hopefully she hasn't said she feels completely fine as its been a pain getting her on the right benefit.
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Hi ems80

Welcome to TP

Just found your post! Good that she has finally agreed to a nurse visit. Its a nightmare when they live so far away. Have you called Alz society, Carers support UK, Age UK, Crossroads, some do a befriending service. Often the person with dementia comes to feel this person is their friend (which they do become) and will allow them to take them to GP's etc

You may have thought of that or it may not work in your situation but just a thought

:(
 

ems80

Registered User
Jun 4, 2013
16
0
Hi 1954, thanks for the info I actually spoke to my local Alzheimer's society yesterday who was very nice and assured me that I have done all the right steps so far and that I haven't missed anything blatant.
I will contact the others you've suggested and see what help I may be able to get as I have had arguments with nearby uncle (to my mother) who doesn't understand how long things take and thinks you can make 1 phone call to social services and sort entire thing!
It's definitely tough long distance but I'm just happy she's plateaued and seems much happier and relaxed.
 

Donbon79

Registered User
May 26, 2011
48
0
Blackpool, Lancashire
I have to say that you seem to be in a similar position to me 2 years ago. It is a long and rocky road and you will feel like you're banging your head against a brick wall at times but with time it'll all work out. My advice would be to always keep in contact with the services involved with your mum and keep at them. They're all short of staff and have huge workloads and there will be those you come across that are as much use as a chocolate teapot but equally there'll be some who are great. Good luck.
 

ems80

Registered User
Jun 4, 2013
16
0
Well that was a strange weekend! My mother seems to have relaxed much more on the risperidone and is so much more engaging reading books in the car to my daughter when we went out Saturday looking at areas for us to move to.
Only thing was that we were walking through the high st and I stopped near a cafe to tie my laces and a man sitting eating shouts "what the f you looking at?" my family and mother all thinking he's not speaking to us is he? Then we realised he is, he said my mother was staring at him, I managed to diffuse it and we walked on, surprised my mother didn't hit him especially after what neighbours have said with aggression and verbal abuse they've seen recently. My wife and I didn't notice her staring or doing anything but I was surprised at how intolerant and agitated the man was, maybe he has some issues and it's just a coincidence I hope...
She seems to hide it so well when I'm around I just don't understand it.
 

ems80

Registered User
Jun 4, 2013
16
0
Thanks donbon, how is your situation now?
I make sure I speak to as many people as possible as there does seem to be some conflicting help and as you say some are hopeless.
My next issue to tackle is what to do with the small mortgage left on my mothers home as I want her to stay there as long as possible, but not sure whether to take it over or even if I can? She has hardly no savings and is on ESA from jobcentre at the moment until diagnosis.
 

Donbon79

Registered User
May 26, 2011
48
0
Blackpool, Lancashire
Thanks donbon, how is your situation now?
I make sure I speak to as many people as possible as there does seem to be some conflicting help and as you say some are hopeless.
My next issue to tackle is what to do with the small mortgage left on my mothers home as I want her to stay there as long as possible, but not sure whether to take it over or even if I can? She has hardly no savings and is on ESA from jobcentre at the moment until diagnosis.

Sadly not so good for us at the moment (have just posted a new thread). I hope things have gotten better for you all. If you've not already claimed Disability Living Allowance or Personal Independence Payment after 8th April for her then you should. Start the ball rolling as quickly as possible as you don't want to be hanging around waiting for things to be done. If your mum doesn't have Power of Attorney in place make a start on applying to be a deputy through the Court of Protection now as it takes months to sort out. Then you can help with her property and finances and have a legal right to do so. Contact the council ask about a carers package to help her stay at home for as long as possible although if you're in contact with the mental health team now they should be sorting all that out. Hope it helps.