Thanks Kazzy,
I know you're right,I'm learning that the only way to get some help is to dig my heels in and shout for it.
My mum went through this with her own mum-that's a different story and truly horrible treatment in hosp and ended up dying from a brain haemorrhage because some ******* didn't put cot rails up on the bed hence her smashing her head which led to her death..This was back in 1994,a while ago,but still fresh enough to make me hesitant.
I guess that's why I'm or have been holding back,I'm shattered,skint and scared,but I know for my daughters sakes I've got to look at this option now..
Can I ask,how long did it take finally for the doctors to make a diagnosis for your mum? And did this help with you getting her a good care home?
And thanks so much for your reply,I don't know where I would be without TP now,can't get no answers in the real world much,that's for sure.
Jane, x
Well where to start??? Mum lived on her own and miles from me, over the years she has alienated most of her remaining family so I am it really (and a nephew who is even further away) She is prone to strokes and (luckily?) had a small stroke one day and ended up in hospital. We found evidence of hoarding and other stuff in the house when we went to collect things for her, by this point she was acting very strangely and after talking to my Nephew, her Neighbours etc I realised that she had been "odd" for some time. She was covering up memory losses etc but the stories were all very consistent. (Burning Xmas Dinner for 5 hours for example)
She has always been "difficult" but now she was losing her temper all the time over nothing and being very aggressive. I mentioned it to the Consultant (she was in the Stroke rehab unit then) and things started to add up. Luckily in Stoke there is a Dementia assessment place (sadly to close) so she got access to the right assessments. They gave her the short test and I looked at care homes as the Social Workers (who are based at the assessment unit) and carers agreed she was not able to look after herself safely. (she had to be stopped twice from walking straight into a road - and threw her mobility frame at someone in a shop!) That was all that was needed ref putting her into care not the full Diagnosis. All that she needed was the Social Workers and the Mental Health nurse to state their case in an assessment - and for me to reiterate time and time again that I could in no way look after her and that I was already extremely stressed - I even asked them what would happen if they let her go home, even with a complete 4 times a day package, if she got on a bus and fell/walked into a road etc. I think I even mentioned that they had a Duty of Care several times!
I found somewhere nice which was not easy!!! There are so many truly vile places I was shocked!! I looked at about 15 places and to be honest you get the feel of the place straight away (and whether the "carers" are caring at all!). I did this over a few weeks when it was becoming clear that Mum was worse than we had thought.
I got the full diagnosis due to my interfering cousin to be truthful (who thinks my Mother is fine based on her 3 times a year visits!) and to make sure that I had done the right thing (puts your mind at rest), also I needed it to start applying for the Court of Protection in the absence of Power of Attorney. The Cousin even had her Brother go to see my Mum which caused all sorts of issues as he has not seen her since the last family funeral and he told her they were going to "spring her" out of the Care Home!! Apparently he was going to do her shopping - yeah right! I called a meeting with the chief SW, Mum's SW, the CPN who assessed, the Head of Care me & my Cousin. Turns out she felt let down by the system cos her FIL had been allowed to get to the point where he was climbing out of windows and disappearing at 85!!! She has not been seen since. Poss gone back to Oz?
I understand the feeling of being the "evil witch" as my Mother has been far from nice to me for ages!! But reading the comments here and talking to others at the Care Home I realised that they all had similar experiences and guilt trips to deal with. Life is not how it used to be. Women now are not necessarily married to a supportive bloke if at all, they look after the children for longer and in most cases work on top of it all. Add the fact that most families no longer live n the same street and you have a recipe for disaster. We can no longer look after our own easily.
The full diagnosis took a few months but the test was done and the consultant was lovely. He was a God send really. He sat me down with a cup of tea and said that they were all concerned about me (I was getting divorced, working, looking after my 3 kids and driving 1.5 hours each way to see Mum twice a week!) he effectively gave me permission to take a break and now I only visit fortnightly. He had been tipped off by the Assessment staff that I had a lot on my plate.
I think it was the whole team approach that helped. Although it seemed chaotic at times, they all seemed to know what was going on. I spent a lot of time on the phone though and did make a lot of noise.
I think the Dementia Assessment was great - but I am sure there is an equivalent team in most Councils??? It might be worth starting to speak to people higher up the chain. Don't speak to Nurses unless they are senior - apart from telling them about your stress levels, lack of sleep etc. Ask to speak to the Consultant, call the Memory clinic and question them, then get hold of the SW to remind them that your opinion matters. Remind them that you have children and that all of this is affecting them too!! Remind the Carers and Social Workers that the Duty of Care remains with them ultimately and that you will not be happy if she is "released" and then suffers a fall etc because you cannot do this on your own. I would then go and look at Care Homes. Ask the SW for a list.
Things are slowly settling down with my Mum thank goodness, although I am still waiting on the Mad Cousin reappearing!!! I am 99% happy with where she is and intend to try to find a Care Home that does gardening etc, she is though OK where she is to be fair and the Carers are lovely in the main.
Good luck and contact me any time
Hope you get a few nights good sleep.
Oh and the other tip - Keep a notebook of all of the contacts, conversations etc so you don't forget stuff.
Thinking of you
Karen XXXX
