Rest-bite Advice

[lynz]

Not as good today

saw Dad today wasnt as good as the last visit, but I understand they are trying to find a balance in his medication .He seemed totally out of it today!
but was smiling and laughing I dont think he knew it was us there, I just hope him being there and the lac of interaction causes him to deteriorate
they told us everything was fine but alot had changed today. his bed, doors taken off, the window had perspects over it, and light switches covered they said he was fallen so it was to stop him hurting himself. I dont know if he has been trying to do his braking free thing and this is to try and provent it but it just looked totaly different today. I was shocked to see him on the floor when we got there we where told that he is fallen so although they dont sit him down on the floor if he gets down then they leave him I dont know if I like it but Iam scared to say anything incase he cops it.
I think when he comes home alot will have to change this last week has been a real eye opener for me and alot will have to change at home.
I dont know if mum can get any help with buying Dad an ajustable bed I think this would really help.

(If anyone knows of a grant or anything could they plz let me know TYVM)

Tonight I think I will end up having a cry........Silly mooo
thanks

 

[Brucie]

Hi Lynz

well, crying is a safety valve so please don't be afraid to do it - we all have at one stage or another in this area.

My wife Jan has been crawling for over three years now. Awful at first, but you do get used to it, if it becomes the norm. Jan was damaged at the hospital so she couldn't walk again, but I expect your Dad will soon be on his feet again. Continued crawling is something I have only seen with my wife, all other residents at her home are not so affected.

Best to check the walking thing though, because when walking and standing become compromised [that is, the person is so unsteady they are in danger of falling], I found that we needed to buy a very special bed for Jan - not a normal one at all. Otherwise she would have fallen out and done even more damage to herself.

The time when they are trying to stabilise a person is difficult because they have not yet adjusted medication sensible. Once they have those things sorted, your Dad will be in better condition.

But take things slowly, and don't get alarmed at present. Things will change as they find the regime that suits him best.

Best wishes

 

[Sheila]

Dear Lynz, it is bound to be upsetting to see your Dad like this, but Brucie is right, it will take time to get the medication right. If he is stumbling about, then yes he is safer sat on the floor really isn't he. It's the indignity of it that gets to you, at least that's how these things got to me. Part of us still holds frantically on to the past, when our loved one acted as we expected and things didn't change in the batting of an eyelid. Sadly the illness prevents this now, so we are stuck with our need for normality and the need to do our best for this person who is now more just a shell of the one we love so much. there are no easy answers, just hold him, talk to him of times past, share pictures, flowers, music, most of all share love. Thinking of you, love She. XX

 

[angela.robinson]

hi lynze ,dont be afraid to open your mouth if you dont like or understand what is going on at the so called place of safety there may well be good reasons for what you are finding ,but i have found that the more i have questioned ,and let them know i am not satisfied with things thebetter things have been ,the only thing i have got no where with ,BRUCE,is with the problem of JIM falling ,at home he cannot walk acouple of steps now without his legs giving way even with the care help ,that i have just this week taken on ,two of us are strggling to get him across the room ,on week ends,when i have no help i have to drag him across the room in a computer chair (this is easier than messing getting him into the wheelchair) despite all this ,in respite at the hospital they are still letting him walk about unaided,on his first of 3 stays they rung me most days to say he had fallen ,when i blasted them ,for allowing this ,i was told they could not stop him if he wanted to get up ,could not restrain him,and could not break his falls incase the staff got hurt ,this was backed up by every one i complained to ,social services and his consultant ,all this was relayed back to the hospital so they know i wont let them get away with anything i have since found the staff to be quite supportive ,but still can not get round the falling problem ,JIM his due in again nexed week and i am petrifyed of him getting badlly hurt ,if i was not desperate for a break a would notlet him go but as a 24/7 carer of a large strong man who is becoming increasingly aggressive ,i dont have much choice,so ask away LYNZ,it will do no harm.ANGELA

 

[Sheila]

Dear Angela, I can sympathise totally. As you know my Mum had three falls in five days in hospital. What I did was got on to the PALS rep. do you have one? (They are obliged to follow up any worries you have or point you in the right direction to make an official complaint.) I chose to take the PALS rep with me to meet with those concerned with my Mums care. It made them sit up and think a bit more. Although it was too late for my Mum, because of my creating and another person on similar grounds, they have introduced new safety measures at our local hospital. Perhaps this could help you and your Jim? Love She. XX

 

[angela.robinson]

she ,what does this stand for?WHO WOULD I ASK ABOUT THIS. ANGELA

 

[Sheila]

Sorry Angela, it stands for Patients Liason Officer, every hospital is supposed to have one. You could ask at reception, they should know. There may also be notices and leaflets in the public areas. Thats what the've done down here. There has been a bit about it in some of the carers mags etc lately too. If you can't find anything let me know and I will try to get ours to tell me how to get in touch with someone in your area. Love She. XX

 

[Doreen]

Hi Lynz,

My husband has been in hospital now for two weeks and will be there for many more, he too is having his medication sorted out! I am told this is a slow process as they have to wait until it gets fully into the system, unfortunately, this is taking longer for him because they have to keep tranqualising him and they are not getting a proper assessment. Jims walking has deteriated so much that it now takes 3 people to take him to the toilet and inevitably he gets out of his chair somehow and falls, the other morning he fell out of bed while the nurse was getting his clothes out of his wardrobe, he is full of bruises and there are times I wonder what is happening but I keep my mouth shut, but my youngest daughter just goes in like a bull in a China Shop and comes out with all the right results and explanations for the bruises, one being that he sits and pinches his arms, I was a bit dubious about this one until I walked in today and he was just sat there doing exactly that. My husband also looks awful, but I am hoping that there will be some improvement in time.


Best Wishes Doreen

 

[Doreen]

Hi Angela,

I really feel as if I am in your shoes, your Jim and my Jim are going down the same road of that there is no doubt. You know the old saying "if you dont laugh you will cry". Please do not be offended but I laughed at the picture of you pushing a computer chair, talk about "wheres theres a will theres a way". Tell me do you live in a bungalow or a house, if it is a house I would like to pick your brains on how you get your Jim upstairs, I have rails everywhere but it still takes me at the front guiding and my daughter pushing from the behind, what is your ingenious method please tell!!!!!

Keep your chin up

Doreen

 

[angela.robinson]

hi doreen
i live in a house ,but there is no mystery ,when jim came of aricept 6 month ago ,ijust could not get him up or down the stairs ,this affect was rapid ,thats when i was forced to take a respite break ,to give me time to have the bed brought downstairs ,and to order a commode,i have a through lounge, wich is helpfull i made the most of it ,and dressed the bed up really nice ,i kept the bedding plain cream to match the curtains right through ,then piled on lots of pretty cushions, it looks good and i think of it as a bungalow ,however i have lost its use as a dining room but as jim has to be fed now ,and will not let me out of his sight long enough to go dine at a table it does not really matter ,it is all a pity really as i had just had a wet room put in last feb ,so he just got 4 month out of it , now the computer chair serves its perpose so far ,but since he started on the sedatives ,the last few weeks his walking has gone much worst i can not get the chair right round to his side of the bed so i am still struggling ,tomorrow i am trying to get a cammode on wheels ,i think that may do it ,its true where theres awill theres a way ,ANGELA

 

[storm]

Hi Doreen,I too have my mums bed downstairs we are lucky enough to have 2 rooms so she as one as a bed/sitting room it is very cosy i have a low divan bed with drawers under for night clothes pads etc and with a throw on in the day it doesent look to much like a bed.The funny thing is she still thinks she goes upstairs to bed!Luck as it that the bathroom is down stairs we also have a commode but a throw again works its magic.storm

 

[lynz]

Just Checking in

Hello everyone just want to say hello to everyone.
Dad is doing ok not Seen him since monday but we are trying to get mum to rest we are going up tomorrow (Friday) to see him,see whats new as they are changing the medicine he is on and has been since he was 11 for his Epilepsy as they have taken the one he was on off the market (makes you wounder why) it is mums birthday as well as mothers day on sunday
(Happy mothers Day to all the Mothers out There)
she has spent 1 birthday away from dad in there 28 yr long marriage so this will be hard but we are going to take her out for dinner and keep her mind ticking over as much as possible, I feel so sad and Cheated for my mum but we will make good (excellent) of what we have because we are a close loving family hopefully my sister will be out of hospital by then so we can all be with her (Gauld bladder stones have made her very ill she has been in the last 4 days)
Anyway hope everyone is ok thanks for all your posts speak soon
Luv Lynz

 

[lynz]

Storm

Thank good for throws thats all I can say!
Mums house is full of bedding and them and today she was looking at more.
keep smiling

 

[connie]

THANKS - CAN I, on behalf of all the mums out there say'thank yuou'. What ever is going on out there we are still MUMS and appreciatve of your good wishes. So many families are divided. trying to be everything from carars, to supporters, to whatever else it takes it takes to keep families together. so thanks for special wishes to us MUMS.......God bless, Connie

 

[Norman]

Sunday is Mother's day .
The grand kids are coming and I will be k*******d by the end of the day.That is more k*******d than usual!
I will be relieved of my duties because Imogen will be looking after Nany,she always does.
She is 7 years old,one of the twins,she fusses round her Nan like an old hen.
At least I will have a happy day----day by day
Norman

 

[Sheila]

Heres to everyone having a lovely day on Sunday. Love She. XX

 

[lynz]

Not been online

Hello everyone sorry I have not been online my other half has been off work and once he gets on this thing there is no moving him...Time stands still.....

Anyway things could be better Dad Went to the Hareald kidd unit in chichester over two weeks ago the staff there where excellent, but he got a chest infection and ended up being moved to the Hospital, given all kinds of things/tube for this and that and oxygen last night they phoned to say they are going to do a ct scan to see if he has had a stroke. due to like I said in a past post....
when he left my mums care he could walk, talk, eat but was just very confused..
now he is having everything trough a tube can not sit up talk anything....
and the doctors are very worried that he has deteariated so very very fast.

Nt been to see him because my other half has been back to work and i have two young daughters and one has been ill and I dont want to risk taking any bugs up there that could cause futher problems been phoning eveyday mum is still going most days so much for rest she is leaving the house at 9 and not getting in till 9 at night but she is worried and he is her eveything.
well will let you all know what happens with the ct scan...

 

[Sheila]

Dear Lynz, thinking of you all, hope things improve soon. Your poor Mum must be so exhausted, but of course she wants to be with him, it's only natural. Sorry to hear things are so difficult right now, love She. XX