General Chat

I don’t often post on here but wanted to say how sorry I am to read of your plight Joan. Of course, hubby wants to come home and I’m very sure that you want him to be with you but it doesn’t sound very practical. You have said you are not good at speaking up for yourself and clearly feel bullied but I’ve noticed you write fluently on here. Could you put your feelings down in writing in the form of a letter with copies to both the care people and your GP? I would be very polite, no point in getting their backs up. Explain that your concern is for the safety and wellbeing of your husband but your own circumstances (age, medical needs etc) mean you are not sure that you can guarantee this. Ask who will be with hubby when you have to leave the house. There will be times you need to visit the doctor or dentist or do some shopping. If the only option is for him to come home, will there be regular respite care for you to have a break?

I don’t know if the idea of writing it all down is helpful or not but it’s something for you to consider. Try and see your GP as well. If he says you won’t be able to cope it will probably carry more weight than anything you say.

And explain the whole situation to your GP as soon as possible - and don't hold back!

Unfiotunately, harsh as it is,they are only looking at your husbands needs. It is almost as though you don’t count except for what you can do to help.

I’m surprised a hoist wasn’t on your list of things to fit in the room, and they take up a lot of space.

Was the OT happy with the state of the electrics? Always people you.can call at night - presume that is the ambulance because they can’t send care staff out in an emergency if they haven’t got one available.

As Florence says, come and rant anytime.

Oh my Joan, what a dreadful situation.

I cant believe the care manager was going to have a meeting without you there??? I mean, your daughter doesn't live with you and has a young family so she isnt going to be involved with his care, is she?

I would urge you to go & see your GP before the next meeting. Go in on your own so you can explain exactly your worries & concerns and how it is affecting you.

They will have to create a Care plan for hubby before he can be discharged anyway.

You say hubby doesnt want carers 4 times a day but you simply cant manage his needs. Does he not realise that? You cannot lift him onto the commode and back into bed. The carers have to be trained to do that. Its called manual handling.

I'm so sorry this whole situation is stressing you out, just so awful but please see you GP and tell him everything that has happened and what is happening by yourself.

Sorry I've not been terribly helpful but on here you can rant and rave and we will listen and try and help if we can.

Florence in the hebrides

Hello Linda & everyone else looking in.
Not the best of days for me re talking to folk, had a sudden meeting with a care manager which was hard going, for me at least.
Daughter & I had just got back from doing my weekly shop when this person phoned daughter to ask if she would meet up this morning, I wasn't mentioned until daughter said that I would want to be included in the meeting & the care manager agreed !

We had to go back to town to meet up with her only to find that she was already talking to hubby about things, & she went on to say that hubby was saying he wants to go home, & as a result of that she proceeded to suggest what equipment he would require & how often he would need daily carers.

I wasn't happy about that because MY needs were just ignored, no other options were discussed with him should going home not be an option, they just decided as he wanted home then that was that !
Another meeting has been arranged for next week..

This afternooon the 2nd OT arrived to view the house & decided that the dining room was the best option for hubby to use, he would be provided with a hospital bed, a steady, a commode & an over bed table, & carers 4 times a day.
Hubby wasn't happy about the 4 times a day & neither was I, there would be NO carers during the night but there are lots of people we could contact who would come out to him in an emergency !

I was told the bed would have to be situated in the centre of the floor leaving very little room to get round the bed with all the other equipment in the same room, & where & am supposed to put the dining room furniture & how I am supposed to keep the room clean with such clutter, GOD only knows.

I am sooo upset at the pressure that is being put on me & have shed a lot of tears today.
I am concerned about his safety & for that matter I am also concerned for MY wellbeing as hubby would rather I care for him as much as possible as he doesn't want carers coming too often, but in saying that even though hubby is a priotity case carers are thin on the ground so who knows what might happen if none turn up !!
We would also have the District nurses coming.

The proffessionals don't seem at all concerned about ME !
Not a good day.

Rant over, Thanks for reading & listening.

Joan.

I keep looking in to see if there is any news from Joan <3

AG, hope that site helps Joan. I couldn’t quite understand the one I looked at.

Joan, I also agree, you need to go and see your GP and explain how you are feeling and how it is upsetting you because you will find it too difficult to manage say through the night etc and also you cant afford the adaptations.
Let him see how upsetting it is for you.

As you said, all very well daughter wanting her dad back home with you but....what if you are snowed in and she cant get to to help? There is an awful lot she needs to consider which I as you said don't think she is looking at the bigger picture.

Also what if the carers couldnt get to you, what then?

See how quick you can get an appointment tomorrow.

Hoping for a solution to suit you as well as hubby.

Florence in the hebrides

In principle, yes, but it depends on the level of risk assessed, and it can vary from one local council to another.

It also doesn't include the cost of any adaptations to the person's home.

https://www.gov.scot/publications/free-personal-nursing-care-qa/

It also depends on the availability of carers, who are thin on the ground in some places.

I,m on my iPad so can’t send the links. I found it confusing but it looks as though personal and nursing care is free in Scotland.

Hello Linda & Florence, thankyou.

The money side for carers hasn't been mentioned, but I will bring that subject up tomorrow, I am really stressing now & hubby isn't home yet.
I am more than capable to make his & my meals we don't need carers to do that & I will put my foot down about that.

I was told the carers would be there to wash him, & help him re the commode, but what if he doesn't "perform" (sorry to be graphic) when they are here, I won't be able to hold him up to get him on to it, he has next to no mobility, & at the moment requires the use of a contraption called a steady(sp) which goes right upto the edge of the bed & all he does is (with help) step onto the seated item, a brilliant thing but no use in my house, they don't run over carpeting, & I'm damned if I'm going to take up the carpets to accommodate one.

Joan.

Perhaps you could ask your GP for his/her opinion, taking into account your health, age, etc.
Perhaps he/she would write a letter to say you are physically unfit to be your husband's main carer?
Let him/her see how stressed you are already. Don't try to be brave!

With a bit of luck, when the OT actually sees the house, they may realise it 's not suitable in any case.

I agree with Linda - you must put your foot down.

Oh dear Joan, It is all very well saying that he will get carers during the day, but I have been through this twice with my parents and it can be a nightmare. For a start, they only come at a time to suit their routine not yours. They have to go to diabetics for “ normal “ mealtimes, so would be turning up at ten am to give him breakfast and coming at four pm to put him to bed. My mum had given him breakfast hours before they turned up.
If your husband has a catheter, how is he supposed to get out of bed to use a commode? It sounds like he can’t get in and out by himself, so you would need to help him.
Sadly your daughter doesn’t seem to be supporting you and is wanting to get her dad home as if that will magically make him better. My sister was totally unrealistic about my parents care as well, she had scales on her eyes, but then she didn’t live nearby so wasn’t the one shouldering the every day care
You must really put your foot down with your daughter and not let her ignore you

Life gets so difficult doesn't it. Of course you'd all like him to be home but maybe you need to be tough with your daughter and ask her what happens when you are snowed in or you have fallen in the dark during a power cut. Or the carer can't get in because the tanker has blocked the road again?

If you can't afford changes to the house how will you pay for his home care after the free weeks are over?

Thankyou names & Argyllgran for your input.

Yes Argyll I think you could be correct about hubby being there today, I did find it difficult to say what I wanted to say especially about MY needs which doesn't seem to be on the agenda !.
Our daughter will be here tomorrow, however she agrees with todays OT person & sees no problem with her dad coming home, but even though she has been a good help to me she isn't going to be here on hand 24/7 & things will fall to me in between the nurses & carers visits !

If it is decided that part of the dining room can house the hospital bed etc, night times are going to be hard for me, the D room is downstairs & my bedroom is upstairs, not ideal if hubby needs me during the early ours perhaps having to go up & down them more than once !

Both hubby & daughter agree with each other about him coming home, but they are not seeing the bigger picture, hubby isn't going to get better,we know that, therefore things are going to get more difficult as time goes on, I'm dreading not being able to do all the things I want to do for him & hubby then having to move out of the house at some point because I am ill.

With regards to any adaptations within the house, that's not an option, we just don't have the money.
I am already stressed what with hubbys illness & now this latest issue & I am left wondering how I will cope & for how long.

Thankyou for listening, I don't know what I would do without being able to talk to you all.

Joan.

Afternoon all.
Oh dear Joan, that's not helpful when people don't listen.

Surely to goodness they realise how old you are!! Yes what happens when the power goes off or during the night? Are you supposed to be the equivalent of a "night carer/nurse?"

I hope your daughter can be with you for the home visit tomorrow. Stand your ground and make them realise how old your house is and that really it's not suitable. Maybe your daughter can get some advice from Social Services as well.

Will be thinking of you tomorrow <3

I had a quiet day except for a basket of ironing. I had the xmas table cloths to iron and put away for another year(3 in total).

Been working on a friends family tree this afternoon and made a little progress!

Shall be speaking to dad later and find out about repairing his conservatory roof, no doubt there will be a long saga there as nothing ever straight forward with him bless him!

Think my tea tonight will be a tuna sandwich with the home made bread as not very hungry today.

Was heavy frost again today but did melt away.Very damp and no wind and feels cold so heating on full blast. Mums boiler was getting a service today so hopefully all went ok as not heard anything to the contrary.

Right need to do some more tree work before teatime.

Florence in the hebrides

I think that's dreadful, Joan.

Of course they are primarily concerned with your husband's welfare - but your own health and wellbeing have a big effect on that.

Do tell tomorrow's OT all your concerns.
It may be easier than it would have been today, when your husband was listening, and when you might not have wanted to sound as if you didn't want him to be at home.

Will your daughter be able to be there too, to reinforce what you say?

If they still think your house is suitable - and it certainly doesn't sound so to me - I fear you will be expected to fund the adaptations.

However, you may be able to get a grant from your local council.
Your local Social Services Dept may also be able to help, or at least advise.

There's quite a lot of info in this link:

https://www.gov.scot/publications/funding-adaptations-home-guide-homeowners/pages/0/

It always seems strange that the 2nd person in the house doesn’t count. Carers are not even allowed to give the 2nd person any help at all. So it is one cup of tea, one sandwich etc.

I’m so glad you’ve got an OT coming out. Hopefully a different one. They will see the state of your rooms and, just as important, hoe easy it is, or not, to actually get to your home.

I think in England, others will confirm, that not all the changes needed are out of your own purse.

Good luck tomorrow.

Hi to all, First of all thankyou so much for all the kind words & thoughts re the meeting this morning.
Hmm, the meeting ! not at all what I was expecting, only "official" person there was the Occupational Therapist, then our daghter me & hubby !
I wasn't impressed & actually end up in tears, as the chat was all about hubbys needs, My needs didn't come into it !

I know full well that hubby has to be catered for but I am the one who will at the end of the day be doing most of the caring.
Hubby would get carer/s for his daily needs, a District nurse to deal with his illness, dressings for his cancer wound, & the changing of his Supra Pubic Cathetar, no carers through the night, that's down to me though I would have to call on our daughter if I needed her help in the early hours !

We will need extra sockets fitted for the hospital bed, & space to accomodate the bed, over bed table, commode, bedside unit.
We would have to have extra sockets installed as there are not many in any of the rooms, I find that worrying as our supply is very old, never been re-wired in our time ( 39yrs) & I would be concerned about overload ! & I am left worrying about that & of any cost that we might have to pay for !
All the rooms are short of sockets but I have managed over the years.

Not at all sure what the position would be re hubby if the power goes off, which happens often here.
The OT didn't want to hear my side of things at all, which is when the tears came !
I have asked for someone to come to the house to check out the prperty as the OT didn't seem to take on board what I was pointing out re the room sizes !

So that's where we left it, hubby wants to come home but as I say no-one is thinking about how I will manage, I'm 77yrs old not 17yrs, & not 100% healthwise.
All this makes me seem very selfish but I am thinking about hubby in all of this, he could end up back in hospital or elsewhere if I become ill or find it all too difficult to cope with !

Someone is coming to see the house tomorrow, another OT, should be interesting to hear what she has to say.

Joan.

Well, the estate agent just rang to say that the young couple who also saw the house on Saturday made us an offer as well. They are in rented, so would have been a good bet, if the second couple hadn’t already offered us 10k more. Having been told that we had accepted a higher offer, they insisted that the estate agent contact us to see if we would change our minds if they beat that offer. The estate agent wasn’t keen, but he had to ask us We aren’t taking part in gazumping, in any case the older couple have already contacted our previous buyers who have agreed to sell them the searches and survey which should really speed things up.

I hope Joan is coping with her meeting today <3