hi all ,feel devastated to day JIM was taken into A/E last night with stomach pains ,after lots of test and exrays they did not think it was serious but did find a lung infection ,so put him on antibioticswe stayed till4 this morning ,they wanted to keep him in for observation i thought it just for the night but they want to do a full assesment ,and was astonished that i was struggling to care for him at homeand how i could not use outside help as he got aggresive if i tried to leave him with anyone else ,everone i spoke to said it was time to let go ,the consultant called this morning she did notknow about this but had also come to suggest that things were to difficult now and wanted to take him on her unit for 3 or 4 weeks while i got my head round the idea of him going in anEMI UNIT EVERY ONE CAN SEE I AM NOW STRUGGLING TO COPE AFTER 7 YEARS SINGLE HANDED iknow in my heart i cannot go on much longer,and i can not pacifye him for very long ,as only i could do the time has come for the nexT step ,it feels so final i almost feel bereaved ANGELA
Next Step
- Thread starter angela.robinson
- Start date
Hello Angela
This is one of the steps in the process we most fear, isn't it - losing our loved one to someone else's care? But as often as not, it happens.
Our caring doesn't end when they leave home.
Jan has been in her home for -blimey - nearly four years now. It seems like yesterday we were in the garden together, at our family home.
We still have that link between us, and I am no longer as exhausted as I was when caring for her 24 hours each day. I can give her my best [such as it is] when I visit.
Yes, bereavement is just the word for what we all feel at this time.
Best wishes
P.S. I was talking to the vicar about Jan's funeral today - trying to plan ahead. Now that is really depressing! Every time my mobile rings in the evening or overnight I think it is bad news from the home, so am always on tenterhooks. But it may not happen for years yet. How DO we all manage?
This is one of the steps in the process we most fear, isn't it - losing our loved one to someone else's care? But as often as not, it happens.
Our caring doesn't end when they leave home.
Jan has been in her home for -blimey - nearly four years now. It seems like yesterday we were in the garden together, at our family home.
We still have that link between us, and I am no longer as exhausted as I was when caring for her 24 hours each day. I can give her my best [such as it is] when I visit.
Yes, bereavement is just the word for what we all feel at this time.
Best wishes
P.S. I was talking to the vicar about Jan's funeral today - trying to plan ahead. Now that is really depressing! Every time my mobile rings in the evening or overnight I think it is bad news from the home, so am always on tenterhooks. But it may not happen for years yet. How DO we all manage?
YES BRUCIE ,I THINK I WILL STILL BE CARING AS MUCH AS I CAN ,AS I DID AT THE HOSPITAL TODAY ,i WILL TRY TO GET A LITTLE OF MY LIFE BACK SOON BUT EVEN NOW AFTER 1 DAY THE HOUSE IS SO EMPTY I DONT WANT TO TIDY ANY OFF HIS BITS AWAY ,EVEN THOUGH I HAD A COUPLE OF RESPITES THIS FEELS VERY DIFFERENT BUT I SUPPOSE IT WILL GET BETTER ,AND I WILL STILL BE KEPT VERY BUSY VISITING HIM.ANGELA.
Dear Angela, like you so rightly say, you feel bereaved. After caring so long and working at it so hard, to have the house so quiet and still, you must feel totally lost. But Angela, there is a silver lining to that dark cloud, if you let it come out. When you go to visit Jim, you can have good times, there will be pleasant things to share and do again. You will not be as exhausted as you have been, so you will be able to pour some time and energy into finding Jim little treats and things to take when you go to see him. There will also be time for you, this illness has robbed you both of your lives, now you can take a bit of time to recharge your batteries. Try to look on the positive side, I know thats easier said than done. Things were getting difficult, as the specialist team say, it is getting too much of a load for you to carry now. Don't feel guilty, you have done much more than most for seven years now. This illness is a battle none of us can win. Try to enjoy the quality time you and Jim will now be able to have together when you visit and be gentle on yourself. With love, She. XX
Dear Angela, my heart goes out to you, my Mum (81) looked after Dad (who died last Nov, at 85) at home for a long time and only had support from social services after showing signs of extreme strain - we both 'gave in' (that's easy for me to say as I wasn't the full-time carer) to Dad moving to a specialist unit when his physical health was obviously starting to deteriorate (he wasn't really able to walk unsupported, Dad had lung cancer on top of his vascular dementia) and he needed full personal care - Mum was also almost on her 'last legs' as it sounds you are, and would have surely suffered badly if Dad hadn't been able to go into the unit. It was a terrible, awful wrench - but it did give us time with Dad which wasn't overshadowed by having to cope with all the physical/emotional demands of caring and enable us to do whatever we could to communicate and comfort when we were there. And it is good that Jim will be somewhere where they understand about dementia if you take up the specialist's suggestion.
You are probably alot better informed than I was but I felt there was alot of information to take on board and give etc. soon, in the unit where Dad was I went to an initial meeting with Mum which I was just expecting to be the specialist, but actually involved 5 people (social worker, physio etc.). Don't ever forget how valuable and important your input is! I felt it was one way we could still make a difference for Dad by trying to make sure all the staff knew as much as possible about him and that any changes in his care needs were registered.
This is all just from my experience, I hope it might be some help.
Take lots of care of yourself
Claire xxx
You are probably alot better informed than I was but I felt there was alot of information to take on board and give etc. soon, in the unit where Dad was I went to an initial meeting with Mum which I was just expecting to be the specialist, but actually involved 5 people (social worker, physio etc.). Don't ever forget how valuable and important your input is! I felt it was one way we could still make a difference for Dad by trying to make sure all the staff knew as much as possible about him and that any changes in his care needs were registered.
This is all just from my experience, I hope it might be some help.
Take lots of care of yourself
Claire xxx
thanks CLAIRE/SHE ,was at the hospital 6 hours to day JIMwas a lot calmer than i expectedthey ruled out any thing serious with the stomach pains , and i found myself making myself heard ,once again ,he was in pads which felt quite dry ,but the sheet felt very damp under his back ,i thought at first it may have been sweat ,when i asked the young nurse ,to check it ,she said they had tried to change it earlier but could not get him to roll over,?2 of them then changed the bed with my help to calm him ,yes he was very frightend at being rolled about ,they would not hear of getting him out of bed to do this ,they also was supposed to check all fluids going in and urine coming out ,i realized he wanted to use the bottle and asked for one ,i gave it back to the nurse after use but nothing was noted down ,they were all very nice to JIM but i felt i had to speak to the higher staff ,who took note ,he was then checked and sheet changed again before i left ,without me having to ask ,So yes the care from me will still go on ANGELA
Hi Angela, yes, too right it will. You will be Jim's voice now, in his corner to ensure he gets what he needs. At times it will frustrate, worry and exhaust you. But if you can do it with a smile and an offer of help rather than a moan you will slowly endear yourself to the staff who will see you as helping rather than interfering. It is a very fine line, but worth doing if you can. Glad to hear Jim was not so distressed today. With regard to the sheet, I can remember Mum being like that at times, I don't know if perhaps they feel giddy or disorientated somehow, what do you think? She always settled afterwards though, both in hospital and when I had her back home and of ccourse if she was dry, there was less chance of her getting sore. Thinking of you, love She. XX
Hi Angela,
I know just how you feel it is now 6 weeks since Jim was admitted and I still miss him at home, I try to keep busy and believe me visiting Homes with EMI units and visiting at the hospital is a full time job, to begin with I was just going home for a snack until my family found out and now I make sure I have a cooked meal every day, because Jim needs me as much in hospital as he did at home, it is a different type of caring and it is true what the previous posts say you have more time to sit and hold his hand and talk to him even if like my Jim he has lost his speech. Going round the homes is heartbreaking, but somehow I just detached myself as if it was not for my Jim, and I am really dreading the day when he is ready to be discharged from Hospital and he will not be coming home to me, since joining this forum, I read every post and one of the most important notes I have taken on board is Norman's Day by Day and that is what get me through.
Best Wishes Doreen
I know just how you feel it is now 6 weeks since Jim was admitted and I still miss him at home, I try to keep busy and believe me visiting Homes with EMI units and visiting at the hospital is a full time job, to begin with I was just going home for a snack until my family found out and now I make sure I have a cooked meal every day, because Jim needs me as much in hospital as he did at home, it is a different type of caring and it is true what the previous posts say you have more time to sit and hold his hand and talk to him even if like my Jim he has lost his speech. Going round the homes is heartbreaking, but somehow I just detached myself as if it was not for my Jim, and I am really dreading the day when he is ready to be discharged from Hospital and he will not be coming home to me, since joining this forum, I read every post and one of the most important notes I have taken on board is Norman's Day by Day and that is what get me through.
Best Wishes Doreen
Doreen
so glad that the day by day helps you.
I live by it and dread the future when I will go down the road where you are now.
Thinking of you
Norman
so glad that the day by day helps you.
I live by it and dread the future when I will go down the road where you are now.
Thinking of you
Norman
Hi Angela,
I can only speak of my Mum's experience, who (like you) cared for my Dad until he had to go into a Home. She was very resistant to letting Dad go, even for respite. I watched her going through all the feelings you describe and so I can feel for you too. Glad to hear you family are watching out for you.
Dad has been in a Home several months now (after a 5 week spell in hospital being assessed) and Mum visits every day, doing those special things for him which no one else could do. She has got to know all the staff (who are lovely) and the residents too. I just wanted to let you know that you're not alone.
All the best,
I can only speak of my Mum's experience, who (like you) cared for my Dad until he had to go into a Home. She was very resistant to letting Dad go, even for respite. I watched her going through all the feelings you describe and so I can feel for you too. Glad to hear you family are watching out for you.
Dad has been in a Home several months now (after a 5 week spell in hospital being assessed) and Mum visits every day, doing those special things for him which no one else could do. She has got to know all the staff (who are lovely) and the residents too. I just wanted to let you know that you're not alone.
All the best,
hi everyone ,just got through the most stressfull week ,watching JIM supposedly being cared for ,they were just not geared up on A/E to deal witH A/D ,he was put on a side ward and left almost flat with nothing to look at but the ceiling ,they tried to sit him up but he was so distressed he kept sliding down ,they still continued to roll him around to change the sheets i wont go on too much about all the things that upset me ,but to day after me being at the ward for 6 hours they discharged him on to the assesment psyciatric block ,i thought things would be much better there ,in someways it is ,but now they are putting the fear of god in him by using a hoist ,and the other patents are so severly demented some are screaming all the time ,i have never seen him so upset ,it is making me have second thoughts about having him in a nursing home ,i am trying to be sensible ,and have looked at a place ,and have put his name on the waiting list .but after the ward meeting ,next week i may suggest having a last shot at home ,taking advantage of ALL the care package i am entitled to ,and if that does not help ,I AM STILL ON THE LIST angela
Hello Angela
There isn't much worse is there, than a health facility that doesn't understand and can't cope with people who are unwell!
Assessment places are also hell. One of my worst experiences was going to the one Jan was going to have to attend, and first being shown the secure ward. It completely broke me up.
[she didn't actually go in there until they trashed her on her third assessment visit].
Both the secure ward and the other open assessment wards contained people who alarmed both Jan and me. She hated the place and I felt massively guilty for having taken her there. The first time I drove her there, we were halfway to the hospital and Jan turned to me and said "is this far enough away from me for you to dump me now?" If there'd been a cliff nearby I'd have driven us both off it.
Assessments are, however, necessary and [hopefully, for a while] ultimately beneficial.
The home Jan is now in is - as I've said many times on TP - excellent, so it is worth being aware that good facilities DO exist. Doesn't make up for Jan not being at home for me to care for, but makes me feel less bad about the whole thing, and she IS better cared for there, if I'm honest with myself.
Final point: YES YES YES, try caring for him at home again and make sure you are comfortable in your own mind that you are not able to cope with his being at home before you take the step of using a care home. This is as much for your own benefit as for his. You will know when you have reached the critical point where other arrangements need to be made.
Wish you all the luck in the world,
There isn't much worse is there, than a health facility that doesn't understand and can't cope with people who are unwell!
Assessment places are also hell. One of my worst experiences was going to the one Jan was going to have to attend, and first being shown the secure ward. It completely broke me up.
[she didn't actually go in there until they trashed her on her third assessment visit].
Both the secure ward and the other open assessment wards contained people who alarmed both Jan and me. She hated the place and I felt massively guilty for having taken her there. The first time I drove her there, we were halfway to the hospital and Jan turned to me and said "is this far enough away from me for you to dump me now?" If there'd been a cliff nearby I'd have driven us both off it.
Assessments are, however, necessary and [hopefully, for a while] ultimately beneficial.
The home Jan is now in is - as I've said many times on TP - excellent, so it is worth being aware that good facilities DO exist. Doesn't make up for Jan not being at home for me to care for, but makes me feel less bad about the whole thing, and she IS better cared for there, if I'm honest with myself.
Final point: YES YES YES, try caring for him at home again and make sure you are comfortable in your own mind that you are not able to cope with his being at home before you take the step of using a care home. This is as much for your own benefit as for his. You will know when you have reached the critical point where other arrangements need to be made.
Wish you all the luck in the world,
thank you Bruce i needed to hear someone say ,its alright to try again even if the odds are stacked against us ,you always see both sides of the argument ,and i value your replys .to day jim was knocked out from the larazapam he was given late last night ,he was just coming round after it was time for me to leave ,i voiced my concerns ,that if he was given another one tonight he would not be getting much fluids down him ,they said if he realy needed it they would give him a lower dose ,as far as i knew he was on the lowest dose ,and maybe if i had been using that i might have managed him better ,the consultant and CPN new the problems of him being a dead weight for me to move after taking the tablet and never suggested a different dose ,something to bring up at the ward meeting ,ANGELA
Dear Angela, if you want to give it another try with the help of a suitable care package, my advice would be to do so. If they are using a hoist in hospital, you are entitled to one at home, I know because they had to get one for my Mum. You may also be entitled to a hospital bed with sides, we had one of those as well. Find out what you can get to help. Do you already have any help at home? I ask this because the managers of both the care agency and our Crossroads branch came to a discharge meeting with me the week before we got Mum home. They were brilliant, saying what was needed etc. Mum's SW also came, have you one of those? Any help you can get to ensure the care package is adequate will be of great use to you. Having said that, they would also have to feel confident that you knew what you were taking on etc. because it is not easy as you know. What ever you decide, my thoughts are with you and your Jim, love She. XX
Hi Angela
regarding the hoist, yes, if you can get one and it works for you, then do that.
At Jan's home they use a hoist....sometimes [when there is just one care worker to move her, though it generally takes 2 of them to get her into it!]
Other times, two of them move her together, by hand.
When I'm there, I move her myself - though admittedly only to resettle her wherever she is.
The point is that staff at these places generally have instructions to use the hoists, whatever the situation, because of health and safety regulations. Often the hoist is much more time-consuming and difficult [and unsettling for Jan] than having a person at each elbow.
regarding the hoist, yes, if you can get one and it works for you, then do that.
At Jan's home they use a hoist....sometimes [when there is just one care worker to move her, though it generally takes 2 of them to get her into it!]
Other times, two of them move her together, by hand.
When I'm there, I move her myself - though admittedly only to resettle her wherever she is.
The point is that staff at these places generally have instructions to use the hoists, whatever the situation, because of health and safety regulations. Often the hoist is much more time-consuming and difficult [and unsettling for Jan] than having a person at each elbow.
hi she /bruce ,the point is i dont want to use a hoist ,this would frighten him and would /and did set off his aggression ,though it is difficult to get him in and out of bed if he is not cooperating ,he is still capable of getting out and then i am on my own trying to get him back in,so i will try a grab belt ? and slide sheet and maybe an adjustable bed ,wich will sit him up and lots of will power,well thats my intentionsANGELA
Hi Angela
I understand entirely.
You have to work according to your perception of your joint needs here. He may well be able to get to bed with your help without any aids, which would be the best thing at present.
The grab belts seem to work best if there is someone each side of the person to grab each strap - at least, that's what I have observed when they used one for Jan for some period a while ago.
Slide sheet, adjustable bed, yes anything you think may help.
Main thing is not to cripple yourself, or his care will need to be taken out of your hands, which is the last thing you would want. It doesn't help that the strain of getting someone into bed happens at the end of a day when we are most tired ourselves. Also, getting them out happens when we may be a bit dozy from sleep/lack of sleep, another time to watch.
Go for it!
Best wishes
I understand entirely.
You have to work according to your perception of your joint needs here. He may well be able to get to bed with your help without any aids, which would be the best thing at present.
The grab belts seem to work best if there is someone each side of the person to grab each strap - at least, that's what I have observed when they used one for Jan for some period a while ago.
Slide sheet, adjustable bed, yes anything you think may help.
Main thing is not to cripple yourself, or his care will need to be taken out of your hands, which is the last thing you would want. It doesn't help that the strain of getting someone into bed happens at the end of a day when we are most tired ourselves. Also, getting them out happens when we may be a bit dozy from sleep/lack of sleep, another time to watch.
Go for it!
Best wishes
Hi Angela, yes, I found the hoist a pain, but the paid carers have safety guide lines and lifting weight limits they have to comply with. Now, the glide sheet, thats another matter, they are absolutely brilliant, they should provide you with one of those no problem. We used one with Mum a lot, you can use them alone but with two, one each side I found them fantastic. The grab belt, thats a bit more tricky and you will either get on with it or not, personally I felt I had less control although obvoiusly I had a firmer grip. Make sure you are given instruction in all thes things before you decide. If you are not comfortable with something, its a waste of time having it as you wont use it, (we hardly used the hoist although the carers did.) My son who is in a wheelchair, thru hip amputee, could easily move Mum on the glide sheet and between us to change or reposition her or the bed, it was a Godsend. Do try to get the adjustable bed, with sides, they too save a lot of back ache. Good luck, love She. XX
hi all ,after the trauma of the last 7 days ,i was suprised to find JIM quite calm to daythey said he had had no medication i asked what he had been given last night ,when it was checked out it was as i thought ,he had been given half the dose now i had spoken to the consultant ,and theGP and theCPN allin the last week and explained that i needed the tablets to calm him but then could not manage him so sedated ,WHY WHY WHY as none of them suggested a lower dose on the packet it only mentions 1 and 2 mg doses so i though i was using the lowest ,i dont know if they are cutting them in half ,but it could make a big difference to me managing things ,hope today is not a one off ANGELA
I'll keep my fingers crossed for you both that it is not a one-off!
There are devices available to successfully cut pills in two - rather than render them to dust as I do when I try using a knife. Nina does it all the time for her thyroid pills - the doctor seemed surprised that this was possible.
We seem to spend an inordinate amount of time teaching the medics their own business, don't we? But then we have more hands-on experience of our own situations, I suppose.....
There are devices available to successfully cut pills in two - rather than render them to dust as I do when I try using a knife. Nina does it all the time for her thyroid pills - the doctor seemed surprised that this was possible.
We seem to spend an inordinate amount of time teaching the medics their own business, don't we? But then we have more hands-on experience of our own situations, I suppose.....
