Help me please

[Caroline]

Sorry this is not diabetes related, so please feel free to move it if necessary.

At the end of 2013 hubby and I were diagnosed with different types of cancer. Mine went away, but I developed other diabetes related problems because my control was terrible during that period.

Hubby didn't get better and now he is really poorly. Because he is ill we all get blamed for everything that goes wrong, and even when we are being quiet get told we are too noisy. Our special needs youngster is expected to sit in a corner and be quiet, when I cook I am commanded to not cook because the smell makes him feel sick, he wont take his medication or even have a light meal (like soup or scrambled eggs or some fruit).

He is really getting me down because I am being blamed for everything, he moans and groans all the time and makes demands all the time then moans when we give or do what he wants.

At the moment because I have a special dressing on my foot to help it heal I am limited to what I can do and that is wrong. The foot is a result of diabetic complications and me neglecting myself to make life feel better for him.

Fortunately our youngster is back at school so he is spared things during the week. Our grown up son and hubby's brothers work full time so I get little help there.

I am getting tot he end of my tether with the demands and some of the selfishness. I know he is very ill, but I could really do with some support. I can't afford to pay for anything as I took early retirement and no one seems to want to be there even part time to give me a break.

 

[Northerner]

I'm really sorry to hear this Caroline, especially after all you have been through, and continue to suffer due to the complications I'm afraid I don't know much about these things, but was wondering if something like the Macmillan Nurses, or Cancer UK could point you in the direction of some relief and respite from your situation? Clearly, it is a very difficult time for him, but making your life harder is not going to make his any easier

Big {{{{HUGS}}}} my friend, I hope that someone can help you out soon, take care.

 

[Pumper_Sue]

Hi Caroline, I am so sorry about your problems life isn't fair is it?

Please please talk to your GP and insist that help is put in place for you. Things like sending hubby off for respite care whilst you have a well deserved break.
Involve social services to arrange this and a sitting service if hubby needs someone with him. Make sure you have time to yourself every day. It's called Me time.
As a family when my dad was so ill we all made sure mum had her time, it stopped her breaking.
Sounds mean but might help write hubby a letter and ask him to read whilst you and the little one are out of the house. Tell him exactly how you feel and what he is doing to you. Perhaps he just doesn't realise what he is doing?

My very best wishes to you in this difficult time.

 

[AlisonM]

How awful for you Caroline, it must be a real nightmare. As Northe says, I'd get in touch with MacMillan's and/or Cancer Research. You might also consider talking to your local CAB, they would be able to tell you what resources are available in your area.

On the food front, you probably know already, cancer and cancer treatments can drastically change the way things smell and taste. A friend of mine found the only thing she could tolerate was plain yoghurt and she ended up living on the stuff (and multivitamins) for months. With my mum it was different, everything made her feel sick and she would only take very small amounts of pea soup, made with nothing but the peas and water, she couldn't bear the smell of cooking either. Do try contacting the folk we've mentioned, I'm sure some of them will be able to help and I hope you get something sorted soon.

 

[Bessiemay]

Hi Caroline I can only sympathise with you. It is disheartening when you do your best to help but then made to feel you have made things worse. It seems to be the nature of the illness especially their lack of appetite and dislike of smells. Please take the advice already offered as there must be help for you. If your health gets worse you wouldn't be able to do anything like as much as you do now. Be assured that the contribution you are making, though not appreciated, is a sign of your caring. Take care of yourself, God bless and many hugs.

 

[Worcester_Matt]

Dear Caroline,

I'm incredibly sorry to read what you've been through and what you're all going through. I certainly recommend speaking to either MacMillan or Marie Curie about getting some nursing support/care for your husband. I'd also suggest going to your GP yourself and speaking to them about what support you and your husband can be offered. I've never had cancer, although I've known people who have. I can imagine that it is very likely to lead to depression in some form, and your husband does sound as if he is depressed. Obviously only you know your marriage and relationship, but it might be worth taking a direct approach and finding the time to explain to your husband how this is affecting you and your relationship, and trying to support him and each other in getting more help.

Good luck in whatever you decide to do. It cannot be an easy situation for any of you.

 

[JimD]

Hi Caroline,
Sorry to hear about your situation. As previously said, McMillan nurses and Cancer UK should help you by giving advice and possibly even arrange for home helps to visit you.
You say you took early retirement, do you get Pension Credit? If so, the pension people have visiting officers who come to gyour home and make sure you are claiming for everything you are entitled to, eg DLA/PIP for your husbamd and son, Carers Allowance for yourself. Welfare rights people do offer good advice as well.
Hope this helps

 

[Redkite]

Sorry to hear this Caroline, what a difficult situation. It's all too easy to neglect your own health but doing that won't improve anything for your husband. You need to be able to cook food and prepare meals - do what you can e.g. keep kitchen door closed and open window, but you won't be able to prevent cooking smells entirely, and your hubby needs to understand that unfortunately.

I agree with all the above comments that you need some extra help (IF your husband will accept it?). Also, have you let your son's school know how things are at home - they can be supportive also. He should be registered by the school as a Young Carer.

 

[Lindarose]

Hi Caroline I'm sorry you're having such a sad and frustrating time. I do hope you can get some much needed help and support xx

 

[Pigeon]

Hi Caroline, so sorry to hear of you situation. Lots of good advice given already, just wanted to add a few more suggestions. Have you heard of Maggie's? https://www.maggiescentres.org/how-maggies-can-help/ There might be a centre near you- we have one at the hospital I work at. They try to make it a home-from-home and either you or your husband can pop in for a chat any time, or they run sessions such as alternative therapy or relaxation that might help him unwind a bit. They have a lot of information and psychologists to talk to as well.

Another thought for helping you is have you tried contacting the carer's association? When my grandad was very poorly with dementia we were able to get an organisation called CrossRoads (local to Nottingham, but there must be similar near you) who had sitters come and sit with my grandad while my grandma could get out to see a friend or do shopping. It was means-tested but they had the discretion to make the service free, which they did for my Grandparents.

On a practical note about the noise etc have you tried things like noise-cancelling headphones for your husband, or headphones for your son so he can watch TV or listen to music without causing too much noise?

Hope you can sort something out- it sounds like a very stressful situation exactly at the time when you would like things to be peaceful and calm and be able to enjoy your time together. Sending hugs xxx

 

[AJLang]

Hi Caroline I'm so sorry to hear what you're going through. When I was married my former husband changed completely because of illness and steroids. He became physically and mentally abusive. Although i felt for him it was also a genuine living nightmare for me for several years. I lost all of my confidence and belief in myself. Please do get in touch with those that the others have suggested. Some, if not all CABs have dedicated cancer specialists. Good luck with getting the help that you really need. Please, please post here anytime that you want help, need to scream and shout etc. sending you lots of love and hugs.

 

[Worcester_Matt]

Hi Caroline,

I don't know if you listen to Radio 4, but the lunch time programme today You and Yours had an excellent interview with a married couple where both had gone through chemotherapy. I don't know if their situation is too similar to yours, but I certainly think it would be worth listening to, and it will be on the iPlayer. I hope you're able to get some help and support soon.

Matt

 

[KookyCat]

Hi Caroline
I agree with what everyone had said about Macmillan and Carers organisations, they have been amazing with my Uncle who has terminal cancer, and provided amazing support for our family. Just a couple of other things that have helped us, that might be helpful. Hospice care for respite can be very useful (although emotionally difficult potentially), depending on local services they can offer short stays in a safe environment to relieve the pressure a little. The one my uncle has used has been marvellous and not at all what you expect, very unlike a hospital and very very supportive. The other thing that helped my uncle was some psychological support (I won't go into detail but it's been a very difficult time aside from the cancer). It occurs to me that your husband may have some understandable but very difficult feelings about being the one who didn't recover and he may need help with the anger that someone not related to him might be better placed to provide (Macmillan arranged that for my Uncle). One other thing, whilst not everyone in the family is in a position to provide direct help, (eldest son and Brother in Law) it's useful to have a chat about what they can do like shopping, coming round at the weekend with a film to break up the time and relieve the pressure, help with sorting paperwork etc. that way they can participate and help, and everyone feels a bit of benefit.

I'm really sorry you're having to go through all this and support isn't more forthcoming, but it is there if you can find it and get through the bureaucracy. It is really important to relieve the pressure so I hope you get some help soon.

 

[Caroline]

Hi Everyone, thanks for all of your replies. There are lots of things to do so I have a starting point.

Sorry I didn't come back quicker, I had a gadget attached to my foot (a negative pressure therapy machine) and the district nurse got the dressing wrong, so I ended up back in hospital, and I will have to go back again for another operation.

At the moment I feel like life sucks, but things will get better.

 

[Amigo]

Hi Caroline,

You've had some wonderful and useful advice and hope you can get some support at this really difficult time. I suppose the problem may be getting your husband to accept help because it sounds as if he's spiralłed into a bit of depression himself. It could be he does feel guilty as kooky says and worried that he can't provide the level of support that he knows you and your son need. Has he ever been given the opportunity to talk this through? Cancer intensifies all the usual domestic and personal relationships and basically can screw up the dynamics of relationships.

I have cancer and diabetes and am also a carer but I don't ever want my husband to fall into the role of carer for me. Your husband might be struggling with that and it manifests itself as anger and irritation. I hope he's the type who would consider talking to someone because I think he needs to. I'm not minimising your needs but it sounds like your struggle is coming from his difficult behaviour. Cancer can make people selfish and self absorbed by the scary and unpredictable nature of it. I certainly have to give myself a talking to every so often.

Take a look at Maggie's as suggested. They helped me at diagnosis and ask for a Carer's Assessment for yourself from Social Services. You have a right for services to be put in place to support you. Check with CAB that you have all the benefits you're entitled to. Macmillan's can also sometimes help with grants. They paid towards the heating for a friend of mine undergoing chemo.

Life is undoubtedly hard at the moment and you'll need to pull reserves from places you didn't even know you were storing them. But this community is clearly behind you wishing you well x stay strong Caroline.

 

[Northerner]

Hi Everyone, thanks for all of your replies. There are lots of things to do so I have a starting point.

Sorry I didn't come back quicker, I had a gadget attached to my foot (a negative pressure therapy machine) and the district nurse got the dressing wrong, so I ended up back in hospital, and I will have to go back again for another operation.

At the moment I feel like life sucks, but things will get better.

Grr! Sorry to hear that you've had to go back in Caroline I hope the op goes well when it comes around {{{{HUGS}}}}

 

[KateR]

Macmillan are wonderful. They helped my dad when he had cancer and put him in touch with other help too.

 

[Caroline]

Thanks everyone. I feel quite well in myself, just fed up there seems so little help. Social workers at hospital can arrange help for me as I am the patient but not for hubby who is not their patient. We have been round various places and most of them are happy to talk but we need help to look after little feller when we are both getting treatment and they are not so keen.

I know my foot will get better, and while I try to stay positive I am not so optimistic about hubby who is not good at being ill. It has helped me personally being able to tell someone how I am feeling here, so thank all of you for listening.

 

[Northerner]

Any time Caroline {{{HUGS}}}

 

[Amigo]

Caroline, I understand your need for help with your son whilst you or your husband receive treatment and there's no reason why this couldn't be provided. If your son has special needs, he should have an assessment in his own right from Social Services and you should have a Carer's Assessment with a defined Care Plan spelling out how your needs can be met in caring for him. You can apply for a Direct Payment to purchase support services yourself for your son or Social Services should be providing cover.

Much depends however on your son's level of disability and whether he qualifies for support but it sounds like he would.

Please push for it. Be insistent because it's your right to be supported through this though I know from my own experience that there isn't the flexibility in the system. In fact either yourself or your husband could qualify as the carer. This link may help;

http://www.nidirect.gov.uk/direct-payments-for-children-with-disabilities