hypothetical question

[nellbelles]

Many of you who are sole carers must have asked yourselves this question..

If you as a carer have a health issue, IE hospital stay, operation etc..

Would you put the person you are caring for, before your own health?

How long would you think it was safe to leave them on their own, and if the answer to that is not at all what would you do? What sort of short term care, if any is available out there?

That question I think applies to many of us whose OH's will not admit to needing help in anyway..

OK.. over to you all..

 

[living in hope]

Hi Helen,
Hard question, firstly I would put my health first because if I didn't it could end up with a longer illness and longer time away from the loved one, so worst for both parties.
What to do with the loved one is a difficult one, I have a son and daughter who would have looked after my husband for a time if the need had arisen. Failing that I would have asked him if he would go into respite so I could go into hospital as I needed an operation (I used this to persuade my husband to go to daycare so I could continue to work).
That's the only things I can think of.
Love
Lorraine

 

[Grannie G]

Hello Helen

You may have read that Dhiren might need cataract surgery but is resisting it strongly. I`ve discussed this with my CPN who discussed it on our behalf with the consultant.
The conclusion is the medics can act in Dhiren`s `best interests`.

It has been established that he would be at risk without 24/7/care. So if I became ill and couldn`t look after him, short or long term he would be taken into care `in his beat interests.`

Hope this helps.

 

[christine_batch]

Hi Helen,

As a disabled person, when Peter was diagnoised age 57 I, although in pain every day looked after him. Until Peter became double incontinent and a Carer came in to wash and dress him.

Because of the nature of my health, my Doctor was still doing the monthly check on me.

When the Consultant told me Peter needed E.M.I. Unit, I refused and carried on for a further year.

During that year I had with Peter at home, my health was becoming quite serious. When my Doctor said "If you do not let Peter go into E.M.I. Unit he will outlive you".

As a mother to 4 children and 6 grandchildren, I had to think of them.

Peter did need the Professional 24/7 care and after he went into N.H. I realized just how much damaged I had done to myself.

Best wishes
Christine

 

[TinaT]

I had an accident the day I got the keys to move into my present home. I broke my wrist very badly, was taken to hospital as an emergency, with my husband and elderly mother in the ambulance with me. A social worker arranged for my husband to be admitted to emergency care and to take my mother home and make sure there was a neighbour with her.

As my husband was under the age of 65 and needed a secure dementia unit, the social worker found this hard to find. A secure home was found and the manager allowed my husband to stay but only for 5 days as he was afraid of losing his licence. The home was only licenced for aged 65 and over. It was the first time in 38 years of marriage we had not slept in the same bed together.

I had my operation and my husband came home after five days. I couldn't even dress him. I had plates, pins and stitches in my wrist and arm. The social worker managed to get a short term home carer come in for two weeks. I was sent a bill from the Local Authorrity for my husbands 5 day stay at the home which came to £140. I was receiving just £60 per week disability benefit at that time to keep my husband!

So it wasn't a hypothetical question for me as you can see. I wonder if it would have been as difficult to get help if I had a vulnerable child in my care and not a vulnerable adult when I had my accident?

xxTinaT

 

[Skye]

I would guess that everyone who reads this forum has put their physical health on hold at some point, and if considering our emotional health needs... come on now be honest!

Can anyone honestly say they haven't / wouldn't do any of these things while caring:
- perform some 'caring' activity though it caused muscle or joint pain (would you stop the activity immediately on feeling the pain?)
- delay or postpone a routing medical or dental appointment for yourself, as it is difficult to fit this into your caring schedule
- continue with a situation that causes yourself emotional pain e.g. anxiety, fear, loneliness, sadness

I think that's absolutely right, Katie.

continue with a situation that causes yourself emotional pain e.g. anxiety, fear, loneliness, sadness

I doubt if there is one member of TP who is not in that situation. Even when the person we love is in care, the stress doesn't change.

I had an emergency hospitalisation for diverticulitis when John was still at home. Fortunately it was in August, and one of John's sons is a teacher, so was able to come and stay with him.

If that hadn't been the case, John would have gone into respite care, he certainly wouldn't have been able to stay alone. That would have been terribly upsetting for both of us.

I think it's worth asking your SW though, so that you have a plan in place, as Sylvia has done. It's something you don't usually think about till it happens.

 

[suzanne]

putting yourself first

All very well in theory but in practice absolute tosh, as a lone carer the very idea of needing hospitalisation for my self is horrendous I would always put mum first,I can be ill after she has gone. She has no concept of illness in others despite having been a gp, her stock answer for everything was "have you taken an aspirin?" [she is pre paracetamol] I had a terrible cold and chest infection when all I wanted to do was lay down in a darkened room and sleep for an hour....didn't happen because she forgot I was feeling poorly. Having to put her into NHS care of any sort is also not something she is going to experience, I have NO faith in the system whatsoever so "over my dead cold body" is what it is going to have to be|!

 

[gigi]

I read this post thismorning....and have had all day to "mull it over"

I think it's a very important issue....

a) I drive away from home and leave Eric in the hands of sitters who depend on my return. God forbid...but if I didn't return what would happen to Eric? But there is a card in my car that explains our situation...

b) If I had a "major" health issue..as in life threatening....surgery or whatever...I'd call in the troops..Eric's care would be out of my hands..and I want to live...

c) Of course if I was to collapse on the floor here and unable to help myself..then I would be beyond help....because Eric wouldn't know what to do..except to call for me and try to wake me up..maybe. But I try not to think about that scenario.

I think it is inevitable that we sometimes put ourselves second. We must recognise this behaviour when it occurs. I also think that social services rely on us taking on as much as we can!

.....

Katie...I agree to a point....but,speaking personally, this our married life...and if Eric had any other illness which I felt able to cope with I would still be there to care...for as long as I felt I was able and willing to. For his sake. It's not about putting myself second....it's about looking after the man that I married and who, before this illness, was my friend and soulmate...and is still my husband. Social Services have offered varying options which don't meet our needs but I'm working with them to find suitable alternatives. Don't forget it's not just me, the carer,it's my husband too. Any solution has to work for both of us... As Eric's disease progresses things will inevitably change...I'm learning to "go with the flow"...there is no perfect solution.

Helen..to come back to your original question....

What sort of short term care, if any is available out there?

That question I think applies to many of us whose OH's will not admit to needing help in anyway..

Well..Eric doesn't "think" he needs help....but somehow "knows" that he does....and does begrudgingly accept it...

Have you had a carers' assessment and do you have any support?

There is help available..but you have to ask for it. Even if your OH denies that you need it...

Love xx

 

[Sandy]

This surprisingly relevant "Trust Me I'm a Junior Doctor" column was in the Telegraph:

http://www.telegraph.co.uk/health/healthadvice/maxpemberton/5516374/Finger-on-the-Pulse-The-importance-of-the-priceless-work-done-by-the-nations-carers.html

Take care,

 

[BeckyJan]

Hello Sandy:
That article touches a very vital nerve! I hope it can be used when discussing 'what carers need?'.
Jan

 

[nellbelles]

Well so far we have coped on own..
No social worker, because they would come from the local blind institute, and Tom worked for them in the early 60's so although things have changed, his mindset is of the bosses playing golf and being told to let sleeping dogs lie..
Now I know that the social workers are a joint venture between the council and the blind institute but Tom will not listen.
My last hospital stay involved carers twice a day, meals on wheels and phone calls from me and family..I was lucky I think, I made contact with the local social services and after a visit all this clicked into place.
But that was two years ago and things have changed and I wonder what the future could bring.
The only thing is that Toms daughter is now retired, and I should not say this but is money oriented so I suppose could be payed to visit her Dad, but that would still leave him in the house for a long time on his own.. not a good idea

 

[Grannie G]

Dear Helen

Hypothetical question it may be. I hope it is. I hope you are well.

 

[nellbelles]

Well reading the posts, it seems that most of you think that medical intervention for the carer should come first, so they can continue to be the best carers for their respective relatives, OH's or parents.

Having to put her into NHS care of any sort is also not something she is going to experience, I have NO faith in the system whatsoever so "over my dead cold body" is what it is going to have to be|!

Well so far I would be with you Suzanne on this but sometimes 'over my dead body' can be true, and while you are getting to that stage you may need more nursing care than your Mum, if that happened, what would happen to your Mum then?

This is still a hypothetical question.. But I am to go back for another biopsy within the next couple of weeks..Doc at hospital thinks it is OK, but with my previous history needs to be sure..

So the hypothetical question is still available for discussion.

 

[Grannie G]

Please let us know the results of your biopsy Helen.
There is often more to hypothetical questions than appear at first glance and I`m sure I can speak for everyone when I say we`ll all be hoping for the best news for you. xx

 

[wendyviv]

Hi I do hope all goes well for you, but I have the same problem, I need a hip op. rather badly, but my husband has alz and relies on me for everything I have been told he would have to go into a nursing home for 2 weeks. 1. I may not be able to get him into the place I want if it is not available at the time. 2. I would be afraid that if he went somewhere else he may not know me when he comes out. At the moment I find it hard dealing with the pain as we have heard from previous members, but when I did eventually go to hospital to arrange the op. my blood pressure went up so high I have trouble with that now. I am afraid I will hang on as long as possible. Your answeres to the above question are all the things that go on in my mind, I have only just joined the forum but find reading the problems mean I am no alone best wishes wendy

 

[nellbelles]

Sylvia.
Thanks for your concern, the Doc says when they do the biopsy, which is under my tongue, they will try to free some of the tension on the scar tissue which if I get the all clear should help..

But, oh and it is a big but, I will not be able to eat for a few days (yes, good for the slimming group) but I will also have great difficulty in talking.. what do you think the chances of Tom remembering for more than I minute at a time..Have done this before so I know it will be difficult to say the least..

[/QUOTE

I am afraid I will hang on as long as possible. Your answers to the above question are all the things that go on in my mind,

Wendy only you will know when the time is right, but remember you are important in this situation as well. Is it not possible to arrange your first couple of weeks after your op at the same place as your OH. Just a thought..

 

[milly123]

best of luck helen hope every thing goes well for you im sure your hubby will be ok milly123

 

[Skye]

Helen, I missed yesterday's post, I'm sorry.

I too would like to wish you all the best. You are a fantastic lady.

Love,

 

[Margaret W]

It is easy. You put the other person first. On the assumption that your own illness will be sorted and theirs will not be so.

Margaret

 

[nellbelles]

Well

I have spent the last two days prompting Tom to remember that I am going for my op Tomorrow (YES I KNOW IT IS SATURDAY) and that it is possible I will not be able to talk much, will he remember I doubt it

So a local anesthetic, but I think this time I may go by taxi, don't need to drive with wobbly legs syndrome..

Going for 1-30 so hopefully Tom can go for a nap, sorry but this time he ain't coming, I cannot deal with him needing to find a toilet every 10 minutes..

So here we go again