What happens when the main carer is ill............?

[Grannie G]

For the past week I have been in agony.

It began with a pain in my hip, and no amount of Heat Rub and massage, eased the pain.

Day by day the pain increased until I was thinking `hip replacement`. But not really, because the pain was only weight bearing. I had no pain or discomfort sitting or lying.

When I could only walk with the aid of 2 walking sticks, I decided this pain wasn`t going to go and necessitated a trip to the GP.

Return journey by taxi, there was no way I could walk.

The GP diagnosed a strained muscle. [Must have been that gardening]

He prescribed strong pain killers, [rubbish] and said if the pain doesn`t go in 2 weeks, to go back.

I`m OK, no temperature, don`t feel ill, etc. I just can`t walk properly and am extrememly slow, hobbling along holding onto walls inside, and using my 2 sticks outside.

But it has frightened me. What happens when/if 24/7 carers become ill.

Yesterday someone rang the doorbell. Of course Dhiren was there first, he opened the door, it was the man to read the gas meter. Whilst I was still hobbling to the door, he was in a panic, shouting at the top of his voice `WHERE`S THE GAS METER?`

When the phone rings, if I`m not sitting by it, it takes me a while to get there. Dhiren runs to get it and hands me the TV remote.

He always vacs, but I always watch him and go round with him. This time I watched from a chair, and my heart was in my mouth as the flex became entangled round his feet.

How have other members coped? And how have they coped if they have been really poorly, even bedridden. Do you have contingency plans?

 

[DeborahBlythe]

Sylvia, really sorry that you are in pain. Nothing worse than trying to keep going when your body is rebelling. Might it be a case of getting in some extra help for Dhiren? If only for an hour or so? Just so you can recreate somewhere? Karen posted an interesting message about buddies elsewhere on TP. Any chance you could call in a buddy for an hour or so, to give you extra space for yourself?
Really hope you feel better soon. I hate anti inflammatories too and have decided not to use them except the ones you rub in. The others do funny things to my tum. The one thing I would say, is that exercise can help with aches and pains a bit, if it's gentle. Just a short walk often helps to straighten out my back. Take very good care of yourself, we don't like it when you are under the weather. We don't like it at all! Love Deborah xxx

 

[Skye]

Dear Sylvia

I'm so sorry you're feeling so bad. The pain on its own is bad enough, but when you also have to worry about the person you're caring for, it's unbearable. I know how you feel about watching Dhiren trying to do things for you. Very trying on the patience!

Should you perhaps go back to the GP? If it's only a strained muscle, I'd have thought it would have been getting better by now. I would reckon an x-ray is called for. But I'm no medic. I'll PM you the name of the painkillers I take for my neck -- they're better than anything I've had from a doc.

The support issue is always a worry. I was rushed into hospital with internal bleeding three years ago (caused by the doc's painkillers!) I was in for a week, and fortunately it was in August. One of John's sons is a teacher,so was able to come and stay with him. Since then I always have the dread that it will happen again. I'm very careful what I eat! Garlic, onions and spices are a no-no. Boring, but safe!

I know Dhiren doesn't want anyone in the house, but might this be a way in for you? If you ask for a carers assessment, it will be for you, not for him. At least if you can get that, you will be on the books, so that if you need help in an emergency they will be able to cover it. You might even persuade Dhiren that your health depends on you having regular breaks. It's worth a try, anyway.

I do hope you feel better soon, and your worst fears aren't confirmed.

Love,

 

[jenniferpa]

Dear Sylvia,

This must be exceptionally difficult for you. I know Dhiren is totally resistent to having others coming in, but it's this sort of situation where having someone else to take the load off would make a lot of difference. I suppose what happens if the situation was worse (i.e. you were carted off to hospital) you would have to call emegency social services and they'd have to arrange for emergency respite, but I can't even imagine how that would affect both of you. I know you don't like to call on your children too much, but what about them coming to help?

Love

Jennifer

 

[Skye]

Forgot to say, you could ring AS or PRT local office first thing on Monday. They'll be able to arrange emergency assessment, and can probably send a rep with SS to support you. This is what happened with me.

Love,

 

[Grannie G]

Thanks everyone.

I`ve slept a bit this afternoon and the pain is easier. It`s fine unless I walk.

As I was feeling more and more dozy, I felt Dhiren becoming more and more depressed. He just doesn`t know what to do if I`m not well and is frightened.

If the worst came to the worst. our son would have him, his employers know the situation and are very good. But I don`t want it to come to that.

I`ll have to try to find out what`s available in this area and go for it. We see the consultant on Thursday, so I`ll ask then.

Trouble is I`m much better online, as face to face, I`m likely to burst into tears.

Anyway crisis over for now, so thank you.

Love xx

 

[Tender Face]

Do you have contingency plans?

Sylvia, just read your update and pleased the immediate crisis has passed, of course. But you have raised a hugely valid point here - for carers on many levels ...... (from one who feels they have gaffed just on EPA level and too late now to do anything about it .....) ......

Contingency planning sounds horrid .... (in whatever circumstance) not least it means facing our own demise in some way - temporarily or otherwise - when we think as carers we are determined to be able to 'see through' whatever is thrown at us ....... but we're none of us infallible either ..... and putting stress on ourselves to pretend we are ... (well, that's one of my failings I know )

Those of us who have little support from any family or close network would be wise to think of those plans ........ I have a couple of phone numbers to alert should I have a problem in meeting mum's needs ... but if I weren't able to access those numbers for myself for some reason ........ who else would know to ......????? ..

Thanks for the prompt!!!!

Look after YOURSELF,

Much love, Karen

 

[janetruth]

Hi Sylvia

I have been SO busy today and just catching up, i'm so sorry you are in such pain.
You sound like you are JUST about coping.

When you are a 24/7 'lone carer' it's your worst nightmare to be ILL yourself.
I hope you get well soon.
I wish I had some advice but I can only offer you a few words of comfort.

Take Care Bye for now
Janetruth x

 

[alfjess]

Hi Slyvia

You have helped me so much in the past and I am sorry to hear you are in pain.

It maybe only muscular from gardening, but it does make you think. What would happen if ??

This could be a blessing in disguise. Could you use the fact that you are in pain to get help? Would Dhiren accept carers for you?

I really hope you are feeling better soon.

Alfjess

 

[Grannie G]

Hi Alfjess, Thank you.

The situation is hopeless.

I really had so little patience today, and must admit Dhiren was sympathetic and tried to help.

But this evening, when I was feeling a bit better, I offered to find him something to watch, and he hit the roof.

`I don`t need you to choose for me`
`I am not an invalid`
`I haven`t got Alzheimers`
`You make me worse`etc.

There are a lot of chanels he likes, Discovery, National Geographic, Science, Sport and New Delhi TV, as well as stations that play Indian Music, but he forgets. I need to remind him. But that was the response.

Can you imagine bringing a carer in?

I think I`ll have a day out tomorrow, by myself. [If I can walk]

 

[Nell]

Dear Sylvia,
I am so sorry for your predicament. I have no suggestions for you about Dhiren, but I am wondering if you have sciatica??

I am not qualified in any medical area, so am just basing my idea on personal experience. I had similar pain which was eventually accurately diagnosed by a masseur after doctors and physios had failed to do so.

She told me that about 10% of sciatica sufferers get the sciatic nerve "trapped" in the muscles of the bum (sorry to be so inelegant!) and it is very difficult to get relief. She massaged me and altho' the massage itself was painful, the relief was HUGE!! I needed about 3 sessions to "fix" it. It has come back a couple of times, but each time just one session of massage has fixed it up.

I hope that someone on TP with more medical training and knowledge can comment. They might be able to suggest another diagnosis or treatment.
I do hope you can feel better and stronger in yourself quickly. Pain is such a debilitating thing.

 

[Grannie G]

Thank you Nell, you describe it to a T.

Now why wouldn`t the doctor have thought of that? Each time I put my weight on my leg, to walk, it feels like a nerve pain more than a muscular pain.

I had a trapped nerve with a slipped disc, years ago. The pain is nearly as bad as it was, but doesn`t travel down my leg, as it did, and isn`t painful when there`s no wieght on it, as it was.

If it`s not better by Monday, I`ll definitely find out about massage.

Thank you so much. I feel better already.

 

[DeborahBlythe]

Thanks everyone.

Trouble is I`m much better online, as face to face, I`m likely to burst into tears.

Love xx

Sylvia, I know it might be embarrassing, but would it be the end of the world if you burst into tears? Tears can be quite eloquent. I hope that you have a good day tomorrow, and that you feel better very soon, Love Deborah

 

[connie]

Sylvia.......not what you need to know, but

A few years ago I had to have a foot operation. Basically I lost a 'toe'

Lionel was fine until I asked him to 'do' anything. Then that became "a problem"

That taught me a lesson..........Life goes on, so just plan as if 'life was normal'. You can never take every contingency into consideration.

Do hope you feel a 'tad' better tomorrow

 

[Tina]

Dear Sylvia,

hope you're feeling a bit better today. I can only begin to imagine how difficult it must be for you not to be feeling 100% and also having to look after your husband.

I know this was what my gramps and also my uncle always dreaded when they were carers to my nan and aunt, respectively. In both cases, there weren't really any contingency plans, but gramps and my uncle always had their children to call on in emergencies as everybody lived relatively locally and visited regularly, helped out, took over to give them a break as well. We are very lucky in this way.

My uncle had terrible trouble with arthritis at one stage, about a year before my aunt died and he was terrified even to go to the docs with it because he thought he might have to go into hospital. And it was always his greatest worry something would happen to him and who would look after my aunt.

Take care, hope things are looking a bit better now and you'll be back up and running, maybe with the help of the massage or another treatment.

Best wishes
Tina

 

[noelphobic]

I'm so sorry to hear you are not well Sylvia. As you know, I have been rather wrapped up in my own problems of late so sorry for not responding sooner.

My back has 'gone' a few times and I think it is sciatica. In my case it has taken a week and then been almost back to normal. However, I went away at the beginning of May and the friend I was with put her back out at the end of our stay. I told her that if it was like mine it would take week to heal, but unfortunately hers is only just healing. She has seen a chiropractor (sp?) which she says has helped. My friend has a daughter with serious medical problems and she is the only one who is able to care for her complex needs properly. Obviously if things had been worse she wouldn't have been able to continue to care for her and this would have caused serious problems and risk to the health of her daughter.

I have told my friend that she needs to get someone trained up but I know it is hard for her.

Hope you are feeling much better soon.

 

[Lonestray]

Snap

Sylvia, you seem to be going down the same road as me. With disk problems and now trapped nerve.

Nell, what a God sent you are, you have confirmed what I guessed my problem is!

Between eight to ten years ago I injured my back, I could not get up off the floor.
As look would have it, I'd employed one of our G'daughters to clean the house once a week (£30). She was present then and phoned the Doctor, who gave me a pain killing injection. Over a period the muscles on my leg began to waste, I was sent for an MRI scan and told I required an operation and told I'd never run again!.

After a six month wait I'd had an appointment with the Surgeon who sent me to have tests on my leg, shocks to test the nerves, they were OK. While waiting for the operation (long waiting lists then) I devised a number of exercises for my back ond leg. At my next meeting with the Surgeon, he decided not to operate and asked what I'd been doing and advised me to continue. He granted my request for an injection to my knee which was painful and with fluid.

I still carry out these same exercises daily. During that period Jean was at the 'wanting to go home stage'.

Nowadays I get a twinge of the same from time to time pain as you discribe it.

It first hit me about three years ago and my GP gave me pain killers and arranged for two carers to attend Jean's cleaning needs. Painful though it was, I kept moving ie walking. It cleared up in a short while.

To avoid a recurance of the problem I ensure that area is kept supple by flection, extension and rotation of the trunk. It works for me. I'm aware your situation is different as Jean is incapable of any movement or speech, no chance of her taking off down the road or throwing tantrums (I should be so lucky).

Don't know if this is of any help, long winded I know. Good luck. Padraig
I only required the carers for the one day

 

[Grannie G]

Thank you once again, everyone.

The pain is easier now, without painkillers. I`m still moving slowly, but not frightened to put my foot down.

I did try walking, but it seemed to make it worse. Because of previous back problems, I am very conscious of eneven surfaces, and the downwards slope of the pavement, towards the kerb, always gives me problems.

Padraig, I will take note of your advice. Your exercise movements sound just what I might need.

This incident has brought home to me just how important it is for a full time carer to stay healthy. I feel a bit of a wimp, as so many of you have done it for so much longer than I have, and in more demanding situations too.

Take care everyone.

Love xx

 

[Lonestray]

No wimp

Sylvia,
One thing your not is a wimp. I have the greatest admiristration for the women who care for their loved ones.

It must feel to some they've been there before. They've completed all the caring for their children, now they start all over again with an overgrown child.

I wonder about the wifes who land up caring for their man who had the "Get Me" syndrome: as they sit watching the TV, Get me a beer, cuppa, fag etc and sometimes when feeling amorous, will add the word, love.

It must feel like heaven and easier for them both, when she put the hubby in a NH where all his needs are met? Padraig

 

[Margarita]

Sorry to read about leg .

I have sciatica really bad last year , I did go to physiotherapy , but what has happen now is the pain is all below my left knee running in to foot/ toes .

Now I have also hurt the foot of my other leg at the side , feeling it going up to my hip my right hip . so now when I walk place both feet on floor it really hurts.

with physiotherapy in hospital refereed by my doctor , I went to a swimming pool they had with warm water , with the physiotherapy in water with me they show me some slow excuses to do in water felt lovely , I was taking strong pain killer while doing those slow excuse other wise it would of been to painful trying to ease that sciatic nerve into place and I miss the last to appointments

I know now way it come back , because of pushing , bending in the wrong way . also I have put on weight , that is putting more weight on to my back joints

hope the pain eases of soon for you