Christmas was cancelled :(

[Suzanna]

hi everybody,

i hope everyone has had a good christmas and is looking forward to the start of a new year!

I have come back from University to spent the christmas period helping out my Dad who is looking after my Mum (59) who has genetic early onset alzheimers. Because i study so far away (i'm in Manchester and 'home' is Surrey) this is the first time i have been back in about 3 months and Mum has shown considerable decline. I think people who see her more often are less aware of the changes but each time i come back i am hit by how much less she can do and how much more anxious she is. Anyway, in order to prevent this spiraling into ramble i will get to some specifics...

Mum's posture has got very very bad, to the point now that she is continually walking around bent over facing the floor. I was wondering if this has been the case for other people, my Dad says Mum's Mum was like this at one stage but i can't remember it. We have asked for advice from Physiotherapy, who apparently popped in for 10 minutes, asked Dad what he was already doing (which he showed her) and she just said that was fine and left.... am i being naive in thinking that more could be done? it just seems that as the condition is degeneretive people aren't bothered with trying??

Secondly, her mobility is much worse and she can no longer climb stairs without a great deal of support and often trips and gets nasty bruises and she cannot walk for more than 3 or 4 minutes now. As we have a dog to walk.... the carer will take mum in a manual wheelchair and my Dad has dug out his Mums old 'shop mobility' electric thing which he takes her out on (Dad doing the controls of course...!). He also uses a board of wood at the top of the stairs when they are up there in case she tries to get down the stairs when he isn't there to help, and similarly we place a little table at the bottom of the stairs when we are down there in case she tries to climb them (you get the idea...!?). I have a friend who works as an Occupational Therapist and i spoke to her for advice on adaptations etc. She honestly told me that the lack of funding and resources for the profession meant that there would be a long waiting list etc so i'm not hopefull. Apparently there is a grant of up to £1000 which can be awarded for equipment, but for things of a greater cost (eg a stair lift) the process can take up to a year. Well. we all know that in a years time Mum's needs will have changed dramatically and so i'm not really sure where to go with it all next. Anyone been here, done it and got the t-shirt? any advice!?
on a similar note, my Dad applied for a disabled parking badge so that when taking Mum out they have less distances for her to travel, but never heard back (which we are assuming means rejection!!?) has anyone been successful in securing such a permit for a person with dementia?

Finally... (i think there is lots more i am forgetting but hey ho) my Dad, who currently has support from a carer mon-fri for 12 hours so he can continue to work is finding things increasingly -and understandably- more difficult. Mum doesn't sleep well at night (up down up down...) which means that though the carer comes so he can go to work, he is so tired the next day that he is as good as useless (he works self-employed doing building plumbing etc). I could write a whole essay alone on this area, but in a nutshell i'm worried about him. He does a great job with Mum, but is quick to anger and often talks about how he can't 'go on like this'. The real trouble is - he refuses to talk to a counsillor, or helplines etc. He is so obsessed with the stigma surrounding "therapy" etc that even though i have begged him to try it he refuses! He will talk to me, but i really feel that i am not the 'person for the job' as i struggle myself and so don't feel that i can be as strong for him as he needs. I have a Sister, but they don't get on (that's a massive understatement actually!) and he is an only child with no other family. My Mum has a brother and sister in law who try, but they don't have the kind of relationship in which Dad could confide in them. I would love for him to have access to the TP forum but he has no internet, can't really even type and is quite dyslexic.... hmmmm...! i have copied a few threads for him to read, so that he can see that he is not alone but it isn't really the same!!

anyway, if anyone has any advice on the above...?

actually there is one more thing aswell... mum has Lorezepam prescribed to help her sleep at night, but we are finding that on the nights we give it to her (which we try not to do) the next day she is really 'out of it' and grumpy (constantly saying 'oh shut up' 'just shut up' while we are trying to wash and dress her)and also that she seems to have more difficulties with saliva management the morning after too. Has anyone else found this, or come across a better tablet which helps with sleeping without the side effects?

right. promise i'm going this time.
hope everyone managed to have some form of christmas celebration!

Suzanna

PS: Christmas was cancelled as Mums one brother who had invited us over became ill and we just couldnt be doing with the additional stress of cooking something elaborate!
PPS: Thanking the forum once again for being a place of respite and in advance for any responses this may recieve!

 

[alfjess]

hi everybody,

Mum's posture has got very very bad, to the point now that she is continually walking around bent over facing the floor. I was wondering if this has been the case for other people, my Dad says Mum's Mum was like this at one stage but i can't remember it.
her mobility is much worse and she can no longer climb stairs without a great deal of support and often

Hi Suzanna

My Mum's posture has been very bad this week also. She is stooping forward to face the floor, but my Mum is 83 and she is in an assessment ward in the local hospital and the only explanation the nurses have given me is she is consitpated, so they have given her senna.

I don't know if this is the answer, because in the past Mum has been listing badly to the left side or sometimes leaning backwards, but has then recovered and straighened up. I would also like to know the answer to this.

Since being in hospital Mum was prescribed Lorazepam benzodiazapam?), when required, that I think was often, but she was prescribed mirtrasipine (sp) at night, I was told it was an anti-depressant with a sedative.

Your Dad shouldn't worry about being dyslexic, both my Daughter's are and they have university degrees. Also both of my grandchildren are dyslexic and I hope they will go on to university as well. If truth be told, I am probably dyslexic too, but when I was at school the condition wasn't widely known.

Would your Mum go to respite for a couple of weeks to give your Dad a break? Never know, she might enjoy it

Take care
Alfjess

 

[christine_batch]

Dear Suzanna,
I am so sorry that you have all this to deal with but in't there always a but ? Your parents need more help.
Are you able to compile a letter to the G.P. stressing all the things you have mentioned here.
Does your Mother has a Social Worker?
Social Worker and Occupational Therapist assessed my disability and I had a stair light fitted which the Council had it as top pririty.
My husband is in the last stage of A.D. and yes they do tend to walk bent over quite a lot, which I saw for myself the first time Peter was placed in Care Home.
When he was at home, the Doctor prescribed sleeping tablet for him. If Peter was "outof it" next morning I only gave him half a tablet. This I did will keeping the Doctor informed.
As for the Blue Badge system - although I have one in my own right, I applied to the local Council for one for Peter, which if I can remember correctly cost £2. This enabled Peter to go out with his Carer and not use my badge which would have been illegal.
What I do find worrying is that your Dad must understand that there is help for you all.
I do admire you for what you are doing.
Have you read through any of the fact sheets on our main page.
I hope this is of any help.
Someone will come on line at some point and offer advice, so just remeber we are all in the same boat and we are here to help and support each other.
I wish you all the best. Christine

 

[Margaret W]

Dear Suzanna,

How distressing to see your mum getting worse on each visit home.

First of all, tell your dad that we will accept his dyslexia very well on this site, there are lots of people who post regularly whose first language is not English, and I don't think we have any problem in undertstanding their mis-spelt words or poor grammar - we get the message! Some are Care Workers or Nurses with lots of experience, so well worth listening to. There are lots of other people who don't type very well, make mistakes in spelling, whatever, but it isn't a problem. We are all here to help. If he has no internet access, he can give you a message to post and we will reply to you. It means a delay of course, but he might see that as an acceptable alternative to counselling.

A stair lift is a great idea, and in the meantime a couple of baby-gates top and bottom, some don't need any fixing, they just tighten up with knobs. You might find some in second hand charity shops, or on ebay, though to be honest Social Services should sort that out for you.

Don't know about the Disabled Badge, the GP apparently needs to certify that she can't manage to walk, so I suggest you contact him.

I hope you/your dad have got council tax rebate sorted, and your dad is claiming Carer's allowance, and your mum probably Attendance Allowance, and anything else that is going.

As a self-employed person, paying his Class 2 NI contribution, he IS entitled to some state sickness benefits, something which lots of self-employed people are unaware about. It isn't much, but it all helps.

What a star daughter you are, sorry about your sister not being involved, you don't say why. Perhaps we don't need to know.

Oh, and well done for recognising that you are not as strong as your dad needs you to be. We all have limitations, and most of the people on the site will know how it feels when we are stretched beyond them, so try not to get there, if you can.

Don't know if this has been of any help, but keep us posted.

Love

Margaret

 

[Margarita]

Your father can get speech and spell check for his dyslexic.


I have a eMac that has Text Edit with speech .

so after spell check I put on speech , it reads it all back to me .

It does take longer doing post , so sometimes I do not use it, but then people will notice more mistakes when I don't use speech .

 

[Margarita]

He also uses a board of wood at the top of the stairs when they are up there in case she tries to get down the stairs when he isn't there to help, and similarly we place a little table at the bottom of the stairs when we are down there in case she tries to climb them (you get the idea...!?).

you could get 2 baby gates for bottom top of stairs , they quite complicated to use , so may be your mother may not figure out how to unlock it .

I have a friend who works as an Occupational Therapist and i spoke to her for advice on adaptations etc. She honestly told me that the lack of funding and resources for the profession meant that there would be a long waiting list etc so i'm not hopefull. Apparently there is a grant of up to £1000 which can be awarded for equipment, but for things of a greater cost (eg a stair lift) the process can take up to a year. Well. we all know that in a years time Mum's needs will have changed dramatically and so i'm not really sure where to go with it all next. Anyone been here, done it and got the t-shirt? any advice!?

Long waiting list yes up to 6 months , so stay hopeful . Lack of funding has got nothing to do with it , that's there issue , its against the law for them to tell you that its down to luck of funding .

your father has to keep ringing them if its longer then 6 months , asking how his case is coming along in getting the adaptations , empersizeing your mother dramatic changes , that how I got shower put in for my mother .

As my friend mother told me to do it like that keep ringing , every month .


My mother would not use stair lift , as she got scared of it . they where going to give her one and I would of had to supervise her on it , but after my mother use one in respite, I new she never get on with one if we had one put in at home.

He does a great job with Mum, but is quick to anger and often talks about how he can't 'go on like this'. The real trouble is - he refuses to talk to a , or helplines etc

talking to counselor, is all well and good . But if your father quick to anger that mean his over tired , need a respite.

No amount of talking to someone on a help lines is going to stop him from feeling over tried unless he take a respite.

 

[Margarita]

Ps

Am going on about it a bit , Just thinking of my own father as his reading was not good , but would never admit it , just keep asking me to read it for him as he sight was not good .

You could get a program that has speech in it , install it for him on computer show him how to do cut paste

so he can paste the whole post he wants to read into the program so it reads it out to him .

then when his confidence grows , he can post . if he does not want to, then at lest he can just have it read out to him , from the comfort of his own home .

His reading may be fine , but if other people out they reading not they can do it that way .

 

[Norman]

Suzanna
I did get a blue badge for my wife.
You should get some answer ,has it gone astray or has the GP not responded?
I would persue the matter with Social Services
Also ask about a Rada key to use in disabled toilets,there is a small charge for this,but it saves a great deal of stress wnen both can enter together.
Hope this helps
Norman

PS is Dad ex service?
The Royal British Legion can help with finance

 

[Nell]

You would have to check this with your Mum's doctor, but my Mum has found Valerian (a natural sedative available from a health food store) to be effective as a sleeping tablet.

It is quite mild (although you can buy Valerian Forte - a stronger mix) but it seems to work for Mum. Perhaps it would be worth a try. . . . .??

Is there any way your Mum could stay in the lower part of the house? I realise this might be impossib;le - no bathroom, for example. But some people have adapted a room as a bedroom (eg. dining room) and kept the person on ground floor level. I realise this may not be possible, and even if it is, your Dad may not like the idea. Really, I'm just offering ideas . . . .

Your Dad is very lucky to have such a loving and caring daughter. Just don't let yourself get used up by others' needs, no matter how much you love them. (Easier said than done, I know!)

 

[Suzanna]

thanks

thanks for peoples responses.
i know dad shouldn't be put off using the forum because of his difficulties with spelling, but to be honest i think it is a complete technophobia issue as well (he's not even on the net) but i will of course pass on all your messages, have been copying them into word for him to read later.
i have decided that once my january exams are done i will go on a funding/equipment finding mission which may be difficult from up in Manchester but not impossible!
i'm not sure what financial support is going on at the minute as it keeps changing... i kind of feel like we are lucky to have the carer monday-friday? i know so many people are out there 24 hour caring on their own... should/can we expect more than the 12 hours mon-fri we are getting? - i somehow doubt it!
we are in the process of appealing to for the independant living fund to go directly to my father to be carer (apparently it only normally funds carers outside of family)as Mum is so so much more relaxed when he is around that no matter how much training an outside carer may have... it just isn't going to be as fair to her as having Dad. We are told that if we are successful the payment will be less... how much less i don't know. Is anyone else recieveing this payment? Also, has anyone first hand experience with continuing NHS healthcare either in a residential or home setting?
Respite for Dad would be great, but Mum is just so distressed when he is not around, that he can't bring himself to do it. he said he would only be happy leaving Mum if either myself or my sister were to take over, but my next break from uni isn't until easter and my sister works full-time. i think we are going to set something up for easter between us, i just hope Dad can hold out that long.
We tried the half a sleeping tablet which was great for the first two nights (in fact when i told dad of the suggestion he remembered that the doctor had also mentioned it) though last night we were back to square one... i will try valerian!

thanks again for everyones advice. i just want for both Mum and Dad to be happy- whatever that means!!

Suzanna

 

[Lucille]

Hi Suzanna

Have sent you a PM.

 

[rhallacroz]

Understanding. We are all mostly in the same boat so know what it feels

Hi Suzanne
Life is so difficult at times. You must be demented coming home and seeing your poor young mum going through this and watching your dad suffering too . It has been said many times on this forum that it is like bereavement in slow motion and how true that is. It sounds like your dad needs some help at the weekend because he works all week he does need a day to himself at the weekend. Do you have a local carers society they often will provide someone to sit with your mum volunteers they are ussually excellen.t
The blue badge I would get on to them straight away and ask to speak to the OT they are usually the people who assess you for these badges.
As for the stair lift yes the grant etc takes about 3 months and then about 3 months for the lift to be installed my advice would be to get the OT round and get the ball rolling. ASAP. I know just where your coming from. I am looking after my Dad with Vascular Dementia who has deteriorated dramatically since Feb my cousin is staying with my mum and together we look after dad with Social Services input he also goes to a day centre. Would it be possible to get Mum into day care maybe that would free up some hours that your dad could use at the weekend. Thats what I do and this enables us to get help with dad in the morning and then at night to get him to bed. I know your mum maybe reluctant to go day care but in my experience it is a good thing. And in a way it gets them used to a caring enviroment and possibly long term if they do need to go into respite it is a bit of a slow progression. It is also gives them social stimulation and also support for your dad. In this situation all we are tryng to do is keep our loved ones at home for as long as possible. Iknow your dad wont want to see it that way and if I am honest neither do I but I am afraid that sometimes we can;t look after them till the end as much as we would wantto do. I hope that doesn;t sound depressing but I think it has to be reality.
Suzanne I do feel so bad for you and know that your dad is really lucky to have you keep smiling and know that we are always here for each other and are all travelling in the same direction.
Take care
ANgelaxx

 

[gerrie ley]

to Suzanne

Hi goodmorning I may be able to help you on two counts.My wife Mollie is almost five years down the line with alzheimers she was causing me all sorts of trouble during the night ie every quarter of an hour waking me to tell me the time going to the toilet every half hour. One night it got me down so much I went down stairs to our medication cupboard and there I found some pills I had used some years ago for a nervous breakdown and I gave her two they worked she calmed down a treat. I have been giving her two every night for the past six months and they are still working. I must stress that that any additional medication must be approved by a doctor.I dont give her any during the day as I dont want her system to get used to them.I cannot give you the name of these pills on this thread as it would be advertising I can say they are herbal and quite well known.Please PM me for the name.

With regards to the blue badge they always send a reply to your application so I think it must have got lost somewhere. I got one for Mollie she has the alzheimers shuffle and her joints are bad. We were asked to see an independant doctor for assessment and he then sent in his report. I hope I may have been some help to you keep batting on we have no choice and good luck we all need it regards gerrie from bradford