OT great, but need some help , what the right way of geting it

[Margarita]

The OT came around this morning , mum showing her how she could do the stars up to bathroom [ mum was very unsteady on her feet ] going up then had to show OT how mum can't coordinate herself to sit on bath life chair needing my help, but she got on it to show OT with out screaming .

OT was really good she could see that mum was also really unsteady going down stairs and told her mum won' t use stair lift . so conclusion to my relief is to make toilet room into a shower without pulling down a wall , as its a small room and she seen smaller one that they still put in shower they put shower unit over toilet seat, toilet seat stays they been also use as seat to shower mum. tile all over walls and do something on floor so water run free down into a drain .

its going to take around 6 mouths, before it all starts , but at lest now we got the ball rolling .

told OT that they should of given us a house adapted , before we moved to new house , but no one would listen to me, because the rules are if someone with a disability with AZ can walk in the hear now of they assessment , they don' t get disability adapted housing as in with walk in shower as they think like in my case when it happen they adapt it

where I see that wrong they know AZ is progressive , but they don' t take that into account when assessing what housing they need for the future

also am taking mum to doctor about her blood results aslo they want to do a diabetic screening on her , have not taken mum to doctor since last year so he also going to see how mum got worse in walking and her un co operation when he does her screening,that should be fun [ not ]

Have been stressing since yesterday when they phone saying the medical team have decided they wants mum to come in for diabetic screening.
am stressing , because its so hard to get mum around with Zimmer frame , she does not get on in new places and wont use wheelchair

she really need NHS nursing care , with her diabetic not district nurses that never come out to check her unless I get my doctor on they case they visit do a full blood test and then just leave me to it .

DOSE NHS continuing care come under the distract nursers if I ask push for NHS continuing care at home would I get more support,

then just social care ,....as now mum social worker leaving and I am going to be left with duty social worker its getting worse with the support and don't know where to start in asking for right help

 

[jenniferpa]

Maggie, as far as I know, yes if you get NHS continuing care at home for things that occur regularly but aren't especially time consuming, then that is provided by district nurses (or whatever they're called now). Have you been in touch with the PALS department of your PCT? They may either know specifics or be able to direct you to the right place. In order to make a determination about NHS care, your PCT should have a team of nurse evaluators - they (if you can find them) might also be able to give you a definitive answer. Gernerally they would be working with nurses in homes, but ifanyone in your area is receiving this care, they would know. You are looking (when you call) for the evalutor for Registered Nursing Care Contribution (RNCC for short). If you want to read about it here are the links http://www.dh.gov.uk/en/Policyandgu...IntegratedCare/NHSfundednursingcare/index.htm

I'm glad to hear you've got the shower sorted (or will have). I stayed in a hotel once where the shower was sort of over the toilet and the hand basin - odd but it worked fine. The only problem I see from your point of view is that you will probably get wet as well, unless the shower head is one of those that you can remove and hold in your hand.

 

[Margarita]

You are looking (when you call) for the evalutor for Registered Nursing Care Contribution

thank you for that link going to look at it , have not rang PALS , but shall do . did ring admiral nurses , but they only open to talk on phone on Tuesdays .

unless the shower head is one of those that you can remove and hold in your hand.

that sounds like a good idea , shall make sure they put one of those on .

appointment at 5pm cant believe that I can be so worried about taking mum to the doctor , all because of her walking ,just hope she does not have a fall ....have book a Taxi

last time when I took her out , she ended up in hospital she fall backwards , it does help me type my worry out as then mum wont pick up on my vibes

 

[Grannie G]

Let us know how you get on at the doctors Maggie. I`m sorry you are so stressed out. I hope you get the help you need without too much trouble.
Love xx

 

[Margarita]

Getting they was fine and mum sat OK for around half an hour , Doctor could not stop saying the word deterioration , what a deterioration since last time he saw her all I could come up with was well she still remember me and all the children , he up her medication for diabetic , as glucose is up to 19 what that mean I don't know, but his doing referral to diabetic specialist at hospital .

also letter to check mum eyes as he said if she does not go she could became blind

he ask me what more can he do for me , so said what more can you do for mum AZ then see to her physiological needs also about PCT continuing nursing care .

the reply to physiological need was meet with , he does have a privet dementia unit, that he can send mum to but the its all in a right mess at the moment sound about right I said when it come to dementia.

continuing nursing care, only said about district nurses , he gave mum flu Jab and perception for another Jab to be given by district nurses .

getting home was a nightmare as it was dark no lighting outside doctors , so mum was screaming as she walk because she thought she was going to fall, she finally sat in cab while zimmer frame would not fit in boot so the driver put it next to mum in back seat while mum scream a scary scram that scared the driver , as he said I'M scared am calling a bigger car , so we just stood they looking at each other while mum scrammed louder , No I said my mum just got dementia AZ , getting confused in expressing herself . So told him to put Zimmer frame in front seat it fit , so of we went . with mum telling me she not having eye test leave it to god will if she go blind and remembered and recognized all the street we went by , leaving me thinking I bet she understood more then her silence she showed with doctor saying deterioration.

and god forgive me for saying before I new what I saying to mum in Spanish as it just slip out ....no wonder you've gone mad , you could not control your diabetic

 

[jenniferpa]

Don't get down on yourself - we've all (well most) of us have said things in the heat of the moment that we either didn't mean, or if we did mean, wouldn't normally say.

 

[sue38]

Oh dear Maggie, what a stress for you and your Mum.

Can you ask for a home visit from the GP as the travel to the surgery was such a trauma for you and your Mum?

 

[Grannie G]

Dear Maggie.

Is the glucose count of 19, the same as you find when you test your mother`s blood at home? 19 sounds quite high. Dhiren`s is between 10 and 12 and we consider that high. Are we talking about the same check? If so we should try to aim for between 4 and 8.

Sorry you had such a hard time. It`s even worse in the dark.

Love xx

 

[Margarita]

Is the glucose count of 19, the same as you find when you test your mother`s blood at home

I am not sure myself should of ask but he never done the finger pick blood test on mum , so can only presume it was from the years full body blood test he ask nurses to do around a mouth a go.

then they this eye test that need to be done to check her diabetic .

Sue doctor told me no to bring her they anymore, if she need to go they I can go for her , if she anything tests done or injection district nurse can come out .

Am going to the primary walk in heath centre where they are bast on monday not worth phoning soon as mum gone am going up they to talk to them warn then that am going to make a formal complain about them if they don't come out , also if they don' t send me appointment for mum eye test , because I have left message on photo, they ring me back say they send me an appointment they never do and then I get doctor saying we don't attend appointment .

they also are going to have to organize transport , because I can' t take the scramming its not like normal scramming , its like the scamming I use to hear in the old style mental home when I was younger as my uncle use to live in one he never scream like that , but the other people did when I use to visit , it was always elderly people laying in they beds or strap in chairs now I know why thinking about it , they must of had dementia AZ can' t express themselves so scream like like , because while mum was screaming she was saying sit next to me , screaming , screaming, as she scared of siting back of car by herself , only thing that make me believe it is that mum before AZ was no way like that in expressing herself .

But I understood that driver when he said he was scared because of my own childhood memories , so just had to show him they nothing to fear , or I would of been left another half hour waiting for another taxi with mum .

I sat with mum and she went back to normal also her fear of siting in back of car alone was gone , but I was left with my old memories that it was madness.


I don't know how much more I can take of this , but if someone in the NHS does not sort it out organizing transport bus I am telling social worker before she leave they going to have to find mum a care home . I know of a few option about transporting mum and zimmer frame , they dial ride buses and black taxis that give discount to the disabled shall get application form from SS she did offer it few years back but I never visualized or believed it would get this bad

 

[Grannie G]

Dear Margarita.

Your mother isn`t so distressed when she goes in the transport to day care, is she?

Do you think she was so upset going to the doctors because there were too many differences for her to cope with.

• 
  It was in a taxi
  It was dark
  It was a different journey
  It was a different destination
  She had a long wait
  It was early evening, was she tired?

It will be interesting to see how she accepts the transport when she next goes to day care.

You sound distraught. I hope things will calm down for you.

Love xx

 

[Skye]

Dear Maggie, I'm so sorry you've had such a bad time with your mum. I hope you manage to get something sorted out regarding transport, it's not fair on either of you, having to cope with that.

Maggie, is it all getting too much for you? You're a different person when your mum is in respite, bright and bubbly, and cheering us all up.

You have the right to a life, you know, and you have so much to cope with, with your brother as well.

Should you be seriously considering permanent care for your mum? She seems to be quite happy in respite, and enjoy the company. I know you want to keep her at home, but please consider yourself as well.

You matter too -- especially to us!

Love,

 

[Margarita]

It will be interesting to see how she accepts the transport when she next goes to day care

she just gone now SS day centre , as I told manger of day centre as he took her arm as long as she sit in front of bus she fine, he said yes we notices that ,

[ they left her alone in middle of bus on seat before very bumpy ..... screams]


So he told mum I am sitting in front seat with driver , as long as you don't scream in my eye , Oh no said my mother , she like the manger . must say did not notice before , but he is good looking . Now know why mum keep going on about him she thinks he may take her on a date ,because he so nice to her , not that his doing a paid job

Thanks for writing it out like that your right , as I get older can' t take stress so had to have glass of southern confront last night

 

[sue38]

Maggie just a thought about the clinic not sending you appointments and the doctor saying you have missed them, haven't you moved recently? Have all the relevant departments got the new address? It may be worth checking that they have updated your records.

 

[Margarita]

Never saw your posting hazel , I have been considering that as I also am releasing the difference in myself

I thought mum going to day center more would help me more in a way it has , but it theirs appointment out of mum environment that I can't handle

1 As its my mother I cant detach my emotion when she scramming in distress

2 The attitude of the system, mum look just like a normal elderly walking person , so why does she need extra help with transport .

3 She not house bound , because she can walk , [ but mentally can' t walk ]

4 As she not house bound district nurses don' t give her priority .

5 if mum just go to day centre , come home she fine

6 if mum was in care home , she be on a level no movement to different environment all needs seen in care home

going to print that out or may email it to social worker with a few more things

Sue I was thinking that , but the primary heath trust wrote to me at new address to ring them for appointment which I did . only thing I can think of as its happen before my post keep going a same number block of flats as my street name .

so the flat say for ex sample 10 Jackson block, smith road ....... same new post code as mine

then mine is only 10 smith road ........ so post post person puts my post in to 10 Jackson block, smith road.

I have complained to main post office , but they such a high turn over in different post people .

lady of of flat got fed up of bring my post , she tell me they No post, then I get post with this is not 10 smith road written on envelope in big black felt pen.

To add to my stress my contract chip that I lost re order week ago and a bank card not arrived , both telling me they sent it over a week a go

 

[Skye]

I thought mum going to day center more would help me more in a way it has , but it theirs appointment out of mum environment that I can't handle

Maggie, I found the same with the day centre. Although it good for John, it was quite stressful for me. Having to get him up, showered and dressed in time, and convince him that he would enjoy it, had me would up before he went. Then I couldn't really relax while he was there, because I was worried about him, and having to watch the clock so that I'd be there to pick him up.

I really think you should be getting more help with appointments. It's not realistic to expect you to get your mum to them without transport.

Love,

 

[Margarita]

I feel all that also with day center , that now I look forward to the days she dose not go to day centre , they no worrying that carer turn up late or to early waking mum up early , carer in a rush because she got appointment and has to fit all clients in, when I complain , she tell me mum book in for 6 30 am ....lol as if no way I told her it was meant to be at 8 am so tell her if she can't make it shall ring office get someone else , that when she told me about appointment at doctor .

Now have another carer for weekend that washes her hands in my kitchen sink, does not like using my towel wants paper towel to dry hands .

she use to come around 11 am on weekends now mum go day centre on saturdays she also says she cant make it early on saturday so I tell her also , will need someone that can , shall hone office get someone that can so following week she turn up at 9 am telling she also come early on sunday so turn up at 7 am on sunday where mum does not go anywhere .

and if I got in to a mood told them both don't want your help do it all myself I would run myself ragged . so have to stop myself from saying that .

am not being negative about the carer as I am lucky to get help with washing mum , just I feel don' t no to cry or laugh about it all the stress I get myself in to , laughing feel better

 

[Margarita]

On a lighter note


Mum did make me laugh when she got back from day centre .

I ask her did she scream on bus she said '' oh no , I held it in all''

she remembered what I said early this morning I said '' if she screams like that again they tell that man she like , so he wont ask you out for a date

all helps ...so all
I need to do now is hire him out to help me take mum to appointments , oh if only life was that easy

 

[sue38]

On a lighter note


Mum did make me laugh when she got back from day centre .

I ask her did she scream on bus she said '' oh no , I held it in all''

she remembered what I said early this morning I said '' if she screams like that again they tell that man she like , so he wont ask you out for a date

all helps ...so all
I need to do now is hire him out to help me take mum to appointments , oh if only life was that easy

Maggie,

How is it you still manage to make me smile even though you're having such a hard time and we haven't had the best day either?

Where would we and TP be without you?

My mum is involved with the local Hockey club and she was going to watch them this afternoon. I suggested to my Dad that he go with her. He preferred to watch the Rugby on TV. 'But there's lots of women running around in short skirts' I suggested. It made him laugh (which today was quite an achievement!)

 

[Margaret W]

Maggie, we have chatted before about my mum, but now it is about your mum. I really do think you are a star carer. Your situation is very difficult, I am surprised and pleased that you have sense of humour. I wish you all my love. I hope the screaming calms down, it is just your mum's frustration at what she cannot do.

Much love, and not much help I know.

Margaret

 

[Margarita]

Thank - you both .

I am sure my mum got selective memory , as my friend from gibraltar called pillie , that upset me a lot few mouth back when mum said she could not remember her , then when she came over saw her , pillie jog her memory and all memories came back about her time with her in Gibraltar .

then today she ring me telling me she coming over on friday i tell mum its pillie on the phone , its been few year since mum spoken to anyone on the phone , so mum take the phone and says '' thank - you for the Spanish omelet it was lovely '' where i take the phone back and pillie says '' you did tell her we left it in the fridge '' yes I said mum just been sarcastic joking about .

that why I say mum has selective memory also it seem my sense of humor my come from mum.

we never left Spanish omelet in fridge we never had the time to do it , we both thought mum would forget about it ...NOT

told mum pillie doing you omelet on next saturday , the smile on mum face just lite up , leaving me thinking mum join into my life now , how the hell came I take that away from her and put her in a home .

married for 55 years always live with someone my father then lived with me after his death 5 years now , how she cope alone with out my crazy family friends around her keeping her simulated is something don't want to inmagine, but I know its got to be done what sorrow life like giving us


famous last words for me , not this side of the year am doing it, next year got to be done lol