HOW TO BE A CARER WHILST HAVING RADIOTHERAPY?

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Hello - Newbie here, so sorry if this subject is an old one.

I am seventy four, and I’m about to start radiotherapy, but I’ve read, in those useful booklets, that tiredness can become a problem.

Now- I’m  very worried about becoming too tired to care for my eighty-eight year old husband. 

He has dementia, and can only walk a few yards; which means that I need to do, literally, everything for him.  From dressing him in the morning to putting him to bed at night. 

I have managed to get him a daily place at a day-care centre until 2.30 in the afternoon; but most of my treatments are around lunchtime, so I’ll have to rush back on the bus to be home in time for his return.  I have asked for earlier treatments, but none are available.

My problem is that I’ll have a two hour bus journey each way for the treatment.

If anyone else, ‘out there’ is also a carer, I would be very grateful for tips on energy conservation… I am, of course,hoping I’ll be one of the lucky ones who remain pretty fit throughout - but who knows?

 

 

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Hi Leonora47800,

 

I’m not sure how helpful my reply will be … but thought I’d leave it with you nevertheless. You have obviously already planned ahead to make  your treatment time easier for both yourself and  your husband. The possibility of fatigue from radiotherapy is obviously a real one, but we all react differently, and I understand your concern. I am not a carer, but after a rocky few months on chemo was keen to get on with radiotherapy (not delay it further) as planned. I also faced a 5-6 hour round trip on the bus.

 

I decided in the end to look into volunteer transport services. The Macmillan information centre at the hospital where I was being treated gave me details. It’s not a cheap option, but it did mean that I was there and back in 3 hours or less and I didn’t have to worry about additional tiredness / missing buses because of delays etc… No idea of your personal cirmcumstances, but Macmillan can also help financially if your income is low. I used the Red Cross service in this area and some of the drivers were pleasant company too.

 

Wishing  you as easy a time as possible on radiotherapy - in all respects,

 

Gill

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Hi!

It sounds like you are trying to plan ahead but being hampered by the logistics of it all.
Forgive me if I am repeating things you have already considered . I am also a carer and found timing of appointments problematic as my son also has a day centre place and needs to be collected.

Is the treatment centre aware you have caring responsibilities? They may be more likely to help you adjust times if they know this is the reason for asking.
Could Social Work or another organisation take over looking after your husband after his day centre or could his time there be extended somehow? On days when my treatment time was later our son’s day centre agreed to keep him there an extra half hour, not a lot in the grand scheme of things but it was enough for me to get back without a panic.
Consider transport options, a taxi or volunteer driver would be quicker than the bus journey and also less stressful for you. 2 hours by bus could be very tiring too. having a shorter journey time and a more comfortable journey would help with energy conservation.

I hope you do remain well but being realistic you may need to have a contingency plan in case you don’t. I know I could not have done everything I normally do as not only was I very tired by the end of my 6 weeks but I also had quite severe burns which have limited me physically for many weeks afterwards.

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I am a carer for my mother who has dementia.  It really is the pits, far worse than the cancer.  That may sound harsh to others but I have found caring for someone who has dementia far worse than having breast cancer.  It sounds like your husband is a bit worse than my mother but it isn’t easy.  I had my first rads today.  I’m juggling her appointments as well as mine, but I live close to the hospital.  I would ask about volunteer transport as others have suggested on here.  I’ve found you have to ask for everything, nothing is volunteered.  My mother goes to daycare one day a week.  It isn’t daycare it is 4 and half hours but I know if I was stuck they would keep her longer but I would have to pay extra probably.  I’m dreading the ‘accidents’.  I have bought some disposable gloves but can’t buy disposable masks locally.  I’m bothered about picking up an infection and wondering how tired I might get as when you’re a carer in the midst of a dementia tantrum or ‘accident’ you’ve just to get on with it.

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Hello again, and thank you to everyone who answered my rather desperate cry of help.

All your suggestions helped me enormously to pick a path through the unfamiliar jungle of Social Services and care providers.

In the end, I had thirty sessions of radiotherapy, which finished last week. (Hooray!)

I am beginning to peel and split under my breasts – but so far it is just great to be home every day again. I’ll be searching the Forum for tips on coping with side effects next!

 

Amazingly enough, all my problems with looking after my 88 year old husband, (who has Dementia) at the same time as having radiography, were sorted out quite efficiently, but as Claireglen warned, one has to ask – nothing was volunteered.

 

I managed to get my husband accepted by the local day-care service, between 9.00 and 2.30 An excellent and very caring service.

I explained to the radiotherapy booking department that I could only attend sessions between 11.00 and 12.00, because I had a two hour bus journey each way, and needed to be home when my husband was returned.

 They were very helpful, and most of my appointments fell between those times.

On the three occasions when they didn’t, I used the local volunteer driving service for the early or late appointments.  Once again, as Gill said, it is not a cheap option, but the bliss of being whisked home in comfort instead of hanging around at bus-stops  was well worth it.

 

 My bus has to pass through the centre of Oxford, which is frequently very congested. So the buses often run late.

My worry was that my husband could be returned home before I arrived back from the hospital.

 So, with the help of, ‘Carers UK’, I found a care company who could provide someone to be there to welcome my husband home, make him a warm drink, and stay with him until I returned.   I haven’t yet had the bill, but peace of mind is priceless!

 

The Breast Care Forum has been extremely helpful with advice and info. So bless you all for your help.

 

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Hello again, and thank you to everyone who answered my rather desperate cry of help.

All your suggestions helped me enormously to pick a path through the unfamiliar jungle of Social Services and care providers.

In the end, I had thirty sessions of radiotherapy, which finished last week. (Hooray!)

I am beginning to peel and split under my breasts – but so far it is just great to be home every day again. I’ll be searching the Forum for tips on coping with side effects next!

 

Amazingly enough, all my problems with looking after my 88 year old husband, (who has Dementia) at the same time as having radiography, were sorted out quite efficiently, but as Claireglen warned, one has to ask – nothing was volunteered.

 

I managed to get my husband accepted by the local day-care service, between 9.00 and 2.30 An excellent and very caring service.

I explained to the radiotherapy booking department that I could only attend sessions between 11.00 and 12.00, because I had a two hour bus journey each way, and needed to be home when my husband was returned.

 They were very helpful, and most of my appointments fell between those times.

When they didn’t, I used the local volunteer driving service for the very few early or late appointments.  Once again, as Gill said, it is not a cheap option, but for the bliss of being whisked home in comfort instead of hanging around at bus-stops it was well worth it.

 

Because my buses had to pass through the centre of Oxford, which is frequently very congested, buses are often late.

I was worried that my husband could be returned home before I arrived back from the hospital.

 So, with the help of, ‘Carers UK’, I found a care company who could provide someone to be there to welcome my husband home, make him a warm drink, and stay with him until I returned.   

I haven’t yet had the bill, but peace of mind is priceless!

 

The Breast Care Forum has been extremely helpful with advice and info. So bless you all for your help.

 

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Hi Newby - I’m not a carer, but I am 82 years old and want to tell you not to listen to anybody but your own body.  After recovering from my mastectomy and thyroid surgery two weeks later, my energy level came back extremely well.  Of course, I do not have a husband to care for, but I help my daughter with her laundry and do all the cooking that’s done.  I have not experienced being tired, but I’m experiencing pain in my rib cage (with 2 more weeks to go).

 

You do have a lot on your plate with your husband and transportation, but take of yourself every chance you get, and the Lord will take care of you.

                                                                   Unknown

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Hi, I am a carer to 3 children with disabilities and will be starting radio in March. You are entitled to a carer’s assessment which is carried out by social work. The assessment identifies areas where help is required and on this basis support is put in place. I will be allocated a key worker to pick my children up from school etc. It’s such a shame that on top of your treatment, you have the additional worry of transport and caring for your husband. If you haven’t already done so please contact social service, they have a legal obligation to carry out a carer’s assessment and hopefully you will get some much needed help. I hope that your treatment is going well and send you my very best wishes. Debs-mae xxx