Hi All, I think it all boils down to a lack of understanding about A/D, in the begining i knew nothing about it only that people forgot things!there is so much more and if you take the time and trouble to find these things out it makes things so much easier. I have spoke to some so called profesionals and mentioned differant things i have learnt from this site and caring 24/7 and they had no idea of even the simplest things,if we can learn how to speak and do A/D why cant they? storm
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- Thread starter angela.robinson
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Brucie, you are so right, to give compassionate care is not just a job, it is an art. Some paid carers have it, some sadly do not. The pay is as you say ridiculous for the job they do. I also think the rules on abuse are very wrong in this instance. Touch and nearness are two of the remaining things that you can share with someone with advanced dementia. To have them denied this is in my eyes very wrong. After all, as you say, they become a child, you would not withhold touch and nearness from a baby now would you? Love She. XX
hi all ,to day has been very upsetting,JIM as been in assesment 1 week now ,he is ten times worst than he was at home ,on the second day there his dose of larazapam was halved ,and the nexed day was the best for a long time ,i had hoped that this was the answer ,but the nexed day he was taken of this and given diazepami know i have already told you this ,but i dont know how to use the quote,anyway he has gone proggressivly worst over the last 3 days which had me up in arms again ,the nurse said they could do nothing ,it was up to the consultant ,i could not bare to watch him like this and told them to get a doctor there now ,they tried to contact her but she was on house call but another doctor was sent for ,i am afraid ,i let them know just what i thought ,they did give him an extra dose of the tablet he is on ,istill have to wait till fri for the ward round ,i phoned back this evening ,and could still hear him shouting ,in the ward.i know your advise will be that it all takes time ,i can understand that ,but when something apeared to be working ,why change ,ANGELA
Hello Angela
You say "when something appeared to be working ,why change"
....that's the main question you need to ask the consultant when you see them.
Don't be afraid to be firm with them in the meantime. It is the most horrible time, I know [and remember], but for the moment you are really in their hands. That doesn't mean you don't have a say however so make it clear you are concerned about what is going on and need to be notified of anything they do that is new, and why.
Best wishes
You say "when something appeared to be working ,why change"
....that's the main question you need to ask the consultant when you see them.
Don't be afraid to be firm with them in the meantime. It is the most horrible time, I know [and remember], but for the moment you are really in their hands. That doesn't mean you don't have a say however so make it clear you are concerned about what is going on and need to be notified of anything they do that is new, and why.
Best wishes
Hi, I think Norman says it all. However the situation is different, once again, between those of us who care at home, and those of us who still care, but have to let others do the 'hands on' routine. When I listen to Bruce I realise there is not much 'hands on' these days anyway.
There is no majic solution, no right way, wrong way. We can only do our best, shout to be heard if our loved ones are in care, to try to get things right. When you are at home, alone, although you know the right way to go about things, sometimes it is not that simple.
Bless you all, keep trying, Con.
There is no majic solution, no right way, wrong way. We can only do our best, shout to be heard if our loved ones are in care, to try to get things right. When you are at home, alone, although you know the right way to go about things, sometimes it is not that simple.
Bless you all, keep trying, Con.
hi all JIM now seems worse than ever,not as aggressive ,but ,slumped over the arm of the chair like a rag doll ,awake ,and babbling, i spent over 3 hours trying to get him to sit up so he could see me ,there was only one recliner ,which they eventualy put him on ,this was slightly better ,but then i was worried to death because a few patents had sores on there legs ,and all the patents were having a turn on this chair another infection to worry about ,as i was about to leave they came to take JIM to the toilet ,he had not had a bowel movement all week and they was about to try a suppositary ,well as i said in earlier post ,they will have a fight on there hands there ,they know about his stay in hospital last week ,but its taken a full week to try something else , the one good thing i noticed ,after my heated comments to the doctor about the TV blaring away ,it has not been on as much and when it was ,it was very low (.small mercys)ANGELA
Hi Angela, you must be so worried, wish things would improve for your Jim. Do you think it is the fact he is so constipated that could be adding to his worsened condition? I know it can affect it sometimes as can a UTI, chest infection etc. If they managed the suppositories, hopefully that will sort the constipation at least. I can fully appreciate your concern over the risk of infection if several patients with sore legs are using that chair. I used to take dettol wipes in with me and was continually wiping any surfaces Mum was likely to come into contact with. I know its not the answer, but it might help a bit. How are you in yourself, are you managing to sleep? Are you eating? You must make sure you don't let yourself miss out on meals to get to see Jim, you will not be able to help him if you too become ill. Be kind to yourself, he would want that wouldn't he. Thinking of you, with love, She. XX
hi she ,if you remember from my post ,payback time ,JIM is not constipated in the true sense he just refuses to go he seems to have a phobia and swears and says its dirty ,thats why he is on movecol to stimulate him ,but they should not have left it a week knowing he had just come out of hospital ,i told them to try and walk him to the toilet instead of using a wheelchair ,that would help well see what they have to say tomorrow,i think it is messing about with the tablets that is causing the problems ,ANGELA
Hi Angela, yes, sorry, I remember now. You are probably right and its the change that is upsetting him. Either way, lets hope the sups get it moving for him or he will be uncomfortable. Hope you are OK, carers matter too! Thinking of you, love She. XX
Hi Angela, sorry to read of Jim's situation. It must be really hard for you. Please though try to look after yourself and your needs (re sleeping and eating) it will not help Jim's situation if you suddenly go under. Thingking of you, love Connie
Hi She And Connie Thanks For Your Replys,i Am Very Tearfull Just ,having Just Returned From Hospital ,all The Questiones I Was Going To Ask At The Ward Meeting ,got Blasted Away ,as I Was Told In No Uncertain,way ,that Jim Was Unable To Return Home As Afull Team Of Trained Nurses Found Him To Hard To Deal With Easily ,and Even With Full Care Package They Would Not Be There When I Needed Them ,they Thought He Was To Difficult At The Moment Even For An Emi Nursing Unit ,and Was To Be Transfered Back To The Hospital Ward That He Has Had Respite In , Deep Down I Know They Are Right ,but I Know I Would Look After Him Better ,and I Know It Would Be At My Cost .i Asked If I Was In My Rights Just To Take Him Home ,she Said She Would Not Stop Me But Would Do Nothing To Aid Me And Strongly Appossed It Well I Would Not Go That Far ; But Would Go Along With It And See How Things Went .its Hard When Thing Are Taken Out Of Your Controle,even Though Acouple Of Weeks Back I New I Was Not Going To Manage Much Longer, Angela
keep trying
hi trish ,i have sent you a PM if you click on the box at the top of this page it will bring the message up ,good luck ANGELA
hi trish ,i have sent you a PM if you click on the box at the top of this page it will bring the message up ,good luck ANGELA
Oh Angela, I am so very sorry. You have worked so hard, it must be awful to have them tell you like that. What to do now then? Well like you said, you were having it hard at home, so make the best of a difficult situation I suppose. When you go to see Jim, make the time really special, take treats to share, (I even took my Mum in a candy floss one day, she loved it!) photos, mementos, books to read out loud, poems, things to touch, smell, hear, CDs are great. (I have several of the war years onwards, if you send me a PM, I will send them to you if you want.) Live by the day, the hour, the moment, treasure them and remember the good times before this awful illness. Love and hugs, She. XX
Hi Angela
So sorry to hear of these developments, which are very close to what happened with Jan nearly four years ago now. Spookily close.
Am I to assume that they will automatically provide a Continuing Care package then? That would be a glimmer of light in an otherwise [at present] sad story.
Even four years being away from my personal care, Jan and I have times together that appear good for her and therefore are good for me.
Very best wishes, and hang on in there - your story with Jim continues, just the setting will have changed.
PS one sometimes wonders whether some medics were dropouts and people thrown out of the charm school?
So sorry to hear of these developments, which are very close to what happened with Jan nearly four years ago now. Spookily close.
Am I to assume that they will automatically provide a Continuing Care package then? That would be a glimmer of light in an otherwise [at present] sad story.
Even four years being away from my personal care, Jan and I have times together that appear good for her and therefore are good for me.
Very best wishes, and hang on in there - your story with Jim continues, just the setting will have changed.
PS one sometimes wonders whether some medics were dropouts and people thrown out of the charm school?
Oh Angela dear, what can I say. You know it is for the best, if not for Jim, for yourself. Now make this time really count. Do all the things She advises, sounds sensible to me. I know it will not be easy. Thinking of you, Connie
Hi All Tomorrow My Jim Is On The Move Again ,to The Psychiatric Hospital Where I Think It May Be A Long Stay ,there Has Been No Abatement In His Aggitation,and Has Been In A Dreadfull State ,sheila,i Think Jim Is To Far Down The Line For Any Of You Suggestions To Work ,even Just Loving And Stroking His Arms Is Only Distracting Him For Minuits ,i Am Just Not Able To Bring Him Any Comfort ,this Was Happening At Home For Some Periods But Since He Has Been In Hospital It Is Continuess,they Dont Seem To Be Doing Any More With His Medication ,i Feel More Stressed Now Than When He Was At Home .angela
Dear Angela, I really hope things will change for the better once Jim is moved. This is so hard for you to bear having given your all at home. Thinking of you, love She. XX
alone now
hi all . yesterday ,i lost my wonderfull husband JIM,after 4 weeks on the assesment ward.it seems he had sufferd some mini strokes after the first 2 weeks there .i spent 10 days there sleeping by his side ,i am releived that it was not necessary to takehim into a nursing home ,and that i was able to keep my promise to care for him till the end .ANGELA
hi all . yesterday ,i lost my wonderfull husband JIM,after 4 weeks on the assesment ward.it seems he had sufferd some mini strokes after the first 2 weeks there .i spent 10 days there sleeping by his side ,i am releived that it was not necessary to takehim into a nursing home ,and that i was able to keep my promise to care for him till the end .ANGELA
My dearest Angela, I am so very sorry to hear of the loss of your beloved Jim. Rest assured, you did fulfil all your promises to him. Angela my love, he is free now, he is once again, he man you loved, not the one racked with dementia. He is his old self again and will watch over you from above now with love, just as you did him while you cared for him here. Love and a big, big hug, She. XX
