A bit of moral support

I am so sorry to hear your news and whilst my hubby has a different cancer I do understand your fears and worries. My plan as we try to cope with the increased pain  and a very quiet Christmas is just to get through it and then go back to worrying about the future. I can get him downstairs thanks to our stair lift which might be something for you to think about in the new year. 
Look I don’t know your circumstances or indeed anything about you at all but I do care that you feel as you do. We can get through this drama queen so please feel free to message me if you need a friend.

Best   wishes for tomorrow. 
June

Hi Drama Queen,

I am sorry you are in the middle of all this and to be honest I would call 111 to get a doctor to come out and check all is ok and nothing untoward is happening with his leg.  Obviously you cannot get him to a and e to get checked out so if 111 says you need to go you will have to get an ambulance. My heart goes out to you both and you need to know you are not alone. This forum helped me a lot when I was on a caring journey so keep coming on here for support as although your husband has the cancer, you are affected as much if not more so you do need support.

I hope you can get some help and hope you can then enjoy your day as much as you can.

Gentle hugs to you both

Julie x 

hello drama queen, 

Its great that you have reached out and posted on here, but sounds like you need a bit more than moral support. You need some actual support! 

It sounds really distressing to see your husband go from asymptomatic to having mobility problems, and especially traumatic that he has recently had some falls.  

I would really reccommend to call the McMillan support line who will offer advice for your specific situation.  Generally speaking from my own experience (of looking after my dad) it is good to think ahead and anticipate problems with mobility, and that these could possibly worsen and what care options are possible. 

You don’t mention if you are in touch with a palliative care team who are in place to manage the symptoms (rather than the condition itself) ? There are are assessments that can be done of your husbands needs and it is good to know what aid is available now or later if needed. 

Above all -remember to look after yourself in all of this. Continue to reach out here, and in real life to get some support network for yourself. 

Hello drama_queen

When I read your post I thought this could be me writing. This is the first time I've ever posted anything on a group. My partner of 26 years was diagnosed with stage 4 bowel cancer in April 2018 and like your husband was asymptomatic. He has had four different chemotherapy treatments none of which have done the job and although he has experienced some neuropathy, his mobility has deteriorated over the past few weeks. We live in an apartment but have a few steps to access outside and really feel his quality of life will go down hill if he can't get out. We have had a visit from a palliative care nurse to look at pain management, but not sure where to go with this.

Sorry I cant offer advice, but just wanted to let you know you're not on your own and any help from the group would be appreciated 

Georgiez

Thank you to Georgiez and everyone else who responded to me. I got some helpful advice from all of your comments. In the end we had a nice quiet Christmas Day with the two of us and a lovely Boxing Day with daughter and family. I managed to put my worries about the future on a back burner. Each day brings its own challenges so I have taken on board the advice about not worrying about the future - just deal with the now. He had a meeting with his oncologist yesterday and asked for an approximate timescale and was told that 6 months was likely. It's hard to hear, but I know that as a pragmatic man, he will want to think of the details eg how he will cope when things get even less mobile, and he has talked about getting a stair lift put in. It was something that previously he didn't want to do because it would spoil the house for me (we have an old one with original features), but if it means that he can get upstairs and down more easily and without risk to himself and me, then I am all for it.  On Monday he has a treatment session and I will use the opportunity to call into the Macmillan office to speak to someone there about what support they can offer us.

Thanks again to everyone.  It was good to know that there is someone out there to whom I can offload now and then.

drama_queen

Hi drama queen. When I realised we needed the stair lift I asked our local council adaptations team for advice as I didn’t want to get the wrong thing. They supplied and fitted a brand new stair lift even though we are in our own home. Apparently our council provide such help to private homes as the lift can be removed when it’s no longer  needed. Might be worth trying your council or ring the Social Care Direct team in your area for an assessment. Hope that helps. 
june x

Thanks, that is really helpful to know. Especially as I would be concerned about getting the wrong one as well.

drama_queen x

Hi, I am sorry to read that your husband has gone down hill but pleased to see that you both realise that you need some support.

If you have not already done so you should contact your local councils Adult Social Care Team without further delay and get both your husband and yourself on their radar, and yes you did read the last part correctly you also need to be on the radar to ensure that you have the support and help that you need to continue to look after your husband, being an informal carer is a very difficult and demanding job which can leave you tired and exhausted.

Getting help

What is a needs assessment

Your husband should have a needs assessment

Needs assessment  - patient

You should have a  Carers assessment 

Both of the above are carried out by your council's Adult Social Team and can be done at the same time or independently.

At the assessment you will have the opportunity to ask what equipment your local council are able to supply and any adaptations that are needed to your home, the notes above do make reference to stair lifts being supplied so I would ask if one could be made available.

There are various ways of obtaining the free needs assessment.

You could ask your GP to do a referral.

But I would suggest that you contact your local council yourself and ask to speak to the Adult Social Care Team and get the both of yourselves on their radar, referring yourself gets the ball rolling quicker.

CONTACTING YOUR  LOCAL COUNCIL 

In England and Wales, Find my council

In Scotland, Info Scotland  Find my Council

In Northern Ireland,Find my social care 

You cannot predict the level of care that your husband will need and when and this why you should have the needs assessments as soon as possible.

When you have your date for the assessment I would suggest that sit down and make up two lists

List 1 what help, support and equipment you need now

List 2 what help, support and equipment you will need in the future.

Both needs lists should be discussed at the assessment and noted on the form.

You should also have available a note of all your husbands ailments, hospital attendances and medication and if you have any medical problems tell the social work worker, don't hold anything back, the purpose of the assessment is get you as much help as you need.

Equipment and adaptions can range from hand rail, toilet seats, bath and perching stools, aids to help getting on and out of chairs and bed, commodes, stair lifts, walk in showers plus more, I was even offered a trolley to help me walk about the house and to carry things.

Remember to think it's not a matter of what you need today but what you might need tomorrow.

If you're above pension age your husband should be receiving attendance allowance and probably at the higher rate if he needs help throughout the day and night..

I hope the above has been of help, if I can be of further assistance I can be found in the Carers only group every day, if you need any more help, just give me a shout out at any time, my name is The BODACH. 

Ian

By clicking on any of the green text above will open up new pages for you.

Sorry I didn't reply earlier; sometimes life gets on top. You've given some really useful advice. We've had various community services from the NHS - district nurse, physio and OT assessments and that has resulted in useful equipment. We've had a stairlift installed and hubby now received attendance allowance which we use to pay for the lift. We hadn't thought of getting the adult social care team involved. Hubby is currently in hospital but with declining mobility we are concerned that he may be bed-ridden when he comes out. 

Many thanks