I suddenly find myself being my wife’s carer.
She was diagnosed with lung cancer a few weeks ago. She’s had 15 days of radiation therapy and is awaiting consultation with the oncologist to see what kind of chemotherapy she will need.
We are both 58. I do everything to try and make her life easier. I administer all her medications. Make sure she gets to appointments. Cook, clean.
She is in constant pain and can’t really do much at all. Neither of us sleep much because there’s pain meds needed through the night.
She has given up work now and I am still working full time. Luckily I do work from home so I’m on hand all the time.
Not sure why I am here to be honest. Suddenly you are thrust into this role and no one asks you and no one gives advice. You’re just given a bunch of meds and sent on your way.
I feel very selfish when I say (in my head) what about me. What about the things I need and want to do. I barely see anyone, talk to anyone. And it’s quite hard.
I feel like she can’t be left on her own. She can’t drive, she can barely make the stairs. And I’m whining that I can’t do the things I need to do.
I am really not sure what I expect or expected.
It’s good that you’ve joined, as you will need the support. It’s an enormous amount of stress suddenly landed on top of you, and you will need support too.
Finance wise - speak to MacMillan or a Maggies Centre benefits advisor - your wife will be entitled to claim PIP. There are extra costs with being so unwell, so you will appreciate it. They will also help with completing the paperwork (my centre did mine for me, when I was going through treatment).
Maggies centres are also a brilliant support for you as well as your wife. If you aren’t near enough one to visit, I think since covid they now offer a lot of support via telephone. If there is one close enough, I highly recommend you both try and visit, possibly do one of the supporting classes. The one I went to made a huge difference for me.
McMillan is also useful to see what other support might be available in your area. There may be local support groups for patients with a specific cancer, or for carers.
Hello @LisaP
Welcome to the forum. Sorry to hear you are going through such a traumatic time.
Others will be along with practical advice for certain. I just want to say that you are very important too and entitled to think of what you need and want. You are not selfish. Far from it,
Welcome to the forum. I’m dismayed that no one is talking to you about where to get help and support. If you have a local hospice near you, give them a ring. In my area, the New Forest, we have a wonderful hospice called Oakhaven. When dad was ill, they were amazing.
@LisaP……hi, you’ll find lots of support here. Sorry to hear of the situation you’re in. My husband has
Had serious health issues over the last year and is only 58, I’m 54 so understand exactly how you feel. Life can be tough, it’s not easy but there’s lots of support here if you need it.
Hi @LisaP My husband, Graham, suffered a stroke 5 days before his 66th birthday just at New year 2021. He’s now 68 and I am 63. We had our Civil Partnership 15 years ago after being together 11 years before that. I joke ‘you cant get rid of me that easily!’
We had to close our business and I have been full time carer ever since. He did recover then went through a series of other health issues including prostate cancer, cardiac issues, respiratory, and others. It’s been a roller coaster.
No pain like your wife but continence issues and that has often meant lack of sleep and I boast I have bed changing down to a fine art! BUT it’s draining so I know where you are coming from. Sleep depravation is dreadful and we must remember it’s used a torture!!
Interesting that this evening over a meal he asked if I BLAME him for what happened. My first thought was how the hell could you think such a thing. It’s because that’s the impression we get from one or two family members. I don’t count them as family now! It’s no-ones fault but would be nice to have a scapegoat.
Like you I look after meds, cook, clean, laundry, garden, chauffeur, PA, medical liaison. Like you I don’t see that many people - the difference is I get to walk the dog so I do bump into one or two people for a few minutes. I want my life back too - I know where you are coming from and it stinks!
It’s NOT selfish to say “what about me” and I have found out the hard way, that you DO have to be selfish to protect yourself. G gets worried if I am out for longer than I say I will be. Then I get moans about not knowing where I was and he was worried about me - WELL PHONE ME THEN - don’t try to guilt trip me when I get back!!
If you look at the CarerUK website you’ll find details of the helpline where you can get advice on benefits and what is available by way of help. Have you had a Carers Assessment? You are entitled to one. Also make sure your GP (and wife’s if different) register you as Carer - they can provide more help and advice and if something happens effecting either of you they know the other may need support. Check with your local Carers Support Centre as they can also give advice and signpost more help.
As has been mentioned MacMillan is a wonderful resource and provide LOADS of practical help as well as advice.
You are right - no-one asks you if you want this role; no-one asks if you are OK with it; no-one helps you with “training”; and none of us is prepared for what hits us like a runaway train. So often a sudden diagnosis or in our case a sudden collapse, means you are straight into it - running flat out and looking like a frightened rabbit in the headlights.
You’ll find LOADS of empathy and support right here and it’s a wonderful place as we all KNOW what you are going through. I don’t think there is one of us who has not had bad days and felt the warmth of the friendship which gushes from the words on these pages - so use the forum and don’t worry about venting if you feel the need - we all do it and this is a safe place. You can share as much or as little as YOU feel comfortable with. I regard this as my TRUE family now as most of my blood relatives have turned away from us for their own selfish reasons.
You are strong and you can deal with this - we’ll all pull with you.
Lisa - here are some links which may be of help:
https://www.carersuk.org/help-and-advice/practical-support/
https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/
https://www.carersuk.org/help-and-advice/support-where-you-live/
A lot of links but I hope some of them are of help to you.
Do NOT try to be Superwoman, start demanding help with caring, especially as you are working too. Do you have a di shwasher and tumble dryer? I call them my Mechanical Slaves!
@Chris_22081
Thank you , you so eloquently said exactly what I was trying to say.
A lot of that resonates with me. Especially family. I have 4 siblings but you wouldn’t think so.
We recently moved from the south to the north (where most of my family live) and I haven’t seen any of my siblings. People suddenly avoid us so we don’t have anyone around us really. My wife is Australian so her family are back there. My daughter in law and my wife get on really well but we’ve not seen her or heard from her since the diagnosis. The ‘I don’t know what to say’ is wearing rather thin now. I understand that some things are difficult for people to deal with. I do get that.
Thank you for the information. I will be sure to take a look.
@bowlingbun
I am not trying to be Superwoman. There just isn’t anyone to ask for help. I think people say ‘let me know if you need anything’ just because it feels like the right thing to say because when you do need something, they have suddenly become unavailable. For whatever reason, the friends I had before we moved don’t even speak to me now.
It’s suddenly a lonely place to be.
Yes I have a dishwasher.
Hi @LisaP and welcome. One of the toughest things about caring for someone in your wife’s situation is that most people are really uncomfortable around serious illness and will do pretty much anything to avoid it. It’s understandable because as a society we often avoid discussion about disability and illness, and absolutely avoid any discussion about death and dying. And the longer they avoid you, the more they feel guilty. Which makes it harder for them to approach you…and so the spiral starts.
Some years ago I saw this at work: my boss announced that she had breast cancer and the next day went into hospital for a mastectomy. All the staff were discussing it and saying things like “What will we say to her when we see her?”
I just said to talk to her as normal. Say hello. Ask how she’s feeling, like you do anyone else. If she wants to tell you she feels like sh**, she will - but most people will say “not too bad today”, but if she feels sh***y, then give her a hug, or a listening ear. Whatever. But she needs to know that she matters to you, and that she has your support.
I was amazed, at the time, that people in our line of work felt so uncomfortable about it. I realise now that it was because they cared, they didn’t know how to face it.
And then there’s us as carers. Our focus turns to the one we care for to such an extent we struggle to talk about other things. A normal coffee and a chat about other stuff doesn’t really happen - and people who are not carers just don’t understand how difficult “normal” can be.
I’ve always found that carers do better when talking to other carers. Because they understand what you’re dealing with. There are local support groups all over the UK, so take a look here: Support where you live | Carers UK - this searchable directory will help you to find what’s available in your area.
Carers UK also has some online support groups called “Care for a cuppa” - Care for a Cuppa | Carers UK - the dates for the next few are given on the link.
And, of course, we’re here. We have a social area called “Roll Call” every month where we “chat over the garden fence” - it was originally called Roll Call by an early member of the forum who sadly died a few years back. It’s a place to pop in as you feel and just join in the chat. Feel free to join in!
I would start by contacting your local hospice today and asking them for advice and help. If they can’t support you they will be able to tell you who can, and how the system works locally. Also ring the MacMillan helpline. Do you have Power of Attorney for your partner? Without it, doctors may be reluctant to discuss anything with you. My mum had been housebound for years so when dad was diagnosed with cancer I knew mum would need a lot more help from me, my mum in law had dementia and we had a son with severe learning difficulties! When dad was ill the G P was unhelpful, so I rang the MacMillan helpline. They asked me his symptoms and then gave me some very accurate information about his prognosis. With that I went back to the GP and then he was much more forthcoming saying he couldn’t talk to me specifically about dad but he could talk in general terms. He then told me everything I needed to know. I know how devastating a cancer diagnosis can be. 20 years ago, when I was 52, I had persistent indigestion, a scan showed I had a large kidney tumour, major surgery followed. Social Services should do a Needs Assessment for your partner, but it may be means tested. However support for you, after a Carers Assessment is often free, they are supposed to support carers who want to keep working. I had counselling funded after my assessment and I would always recommend counselling to anyone in your situation. Having someone to share things with who is looking after your own wellbeing, not that of the patient, is invaluable. I use someone recommended by my GP and with my permission she can share things. Like you, most friends and family avoided us. Feel free to ask here “How do you….” about anything.
Morning Lisa - hope you are doing OK this morning.
The comments about people not knowing what to say ring so true. A family friend’s daughter was killed in the school minibus crash on M40 in 1993. He told us about a friend he saw at church every Sunday who avoided them until Mike grabbed him one day and demanded to know why he was doing it. The guy burst into tears and said “I don’t know what to say to you” Mike’s reply was ‘it doesn’t matter WHAT you say, just say ANYTHING as you hurt us more by ignoring us’. I took that to heart and was glad I had written to him saying ‘nothing I can say will help but just know we are all thinking of you’. I’ve remembered that all these years and try to put it into place whenever I hear bad news. Some can’t cope with others grief and I understand, but to shut off from those who need a little love is cruel.
BB’s comment is right - HERE you can ask anything without being judged or criticised.
I hope you have the best day you possibly can.
Thanks Chris. It’s all certainty an eye opener and a huge learning curve.
We live in a 100 year old town house with quirky stairs which led to a fall this morning.
I’ve talked to the MacMillan nurse this morning who is putting lots of things in motion for us today. Practical help and emotional help ( that’s for me because I’m an emotional wreck at the best of times). It does help, I find, if I am more direct with what we need. What she needs.
Thank you for all of your responses. Sometimes you think you’re very alone and you don’t have to be.
Welcome from the “Original Emotional Wreck”… It never hurts to let go sometimes. I usually do it when out walking Buster in the fields on my own - then I can deny it to anyone else (other than Buster!). I used those words when booking an urgent online appointment with my GP a few years ago and she immediately set aside three appointments!!
Great that you are in touch with MacMillan - they can be absolutely amazing and just “get it” without need for lots of explanation.
Hope she is OK after that fall.
You are not alone.Its common to feel this way & hard work.I had a stroke 5 years ago & my hubby started getting depressed,then suicidal.He spent 7 months in Mental Health hosp & I was on my own with no help for ne.I think the breakdown was due to him being overwhelmed by having to care for me.I had always done everything.He came home,we carried on struggling each day.Then following a fall he spent 3 months in hospital.When he came home was so weak couldn,t do anything.So now,I am his Carer when I actually nèed one myself.
I understand how you feel & you have to take each day as they come.Good Luck.
Vally, welcome to the forum.
As you both have serious health issues, have you ever asked for help?
Are you both claiming disability benefits?
Hi @Vally You have a lot on your plate. Have you had a Carer’s Assessment? Hopefully you DO get some help. If not, don’t be afraid to ask for it. Even if you get the answer ‘no’ for whatever reason, it flags up a need. Is your GP supportive of you both as he/she can open doors for you to get extra support. Support is always available here so never be concerned about sharing what you are comfortable with and asking others on here for advice. I know kind supportive comments are to be found in abundance here and no-one judges and is always supportive.
@LisaP How are you doing? If your wife OK after the fall? No lasting effects I hope. Caring does make you more direct when dealing with ‘officialdom’. Often it is the only way to get the help you need and are entitled to.
@Chris_22081
Hi Chris.
She is a bit bruised. But ok. As ok as can be.
She has commandeered the living room and doesn’t want to go upstairs at the moment.
She mostly sleeps all day and is quite emotional. I’m told this is the effects of the radiation. The dexamethasone she’s on apparently causes muscle weakness. Luckily that’s coming to end soon.
She needs more blood tests and another biopsy in the next couple weeks and we have to wait for those results. We still haven’t had a consultation with the oncologist and won’t do until these results are in. So in a bit of limbo still.
Some days are really hard. I’ve had a week off work but have barely left the house.
Hi Lisa.
Good to hear back. Clearly she was scared by the fall if she doesn’t want to climb the stairs.
When Graham had his prostate cancer diagnosis, he had been due a biopsy but the doctor was off sick and someone else stood in. It was the doctor who saved hi life with an emergency prostate operation 2 years before when he nearly bled to death.
It made it so much easier for us both and he said he didn;t want to risk a biopsy because of G;s history - as he put it ‘I know your prostate intimately!’ so confirmed the cancer and ran through treatments. He did not recommend chemo or radio therapies because of what had happened previously so recommended hormone treatment. HE described it and said possible side effects are like the menopause. The atmosphere was tense and I couldn’t help it. I jumped in with "Oh great - if I’d wanted someone with mood swings and hot flushes I’d have married a woman’. After a couple of second the two nurse present burst into uncontrolled laughter and the consultant cracked up as well. He said it was the best reaction he’d ever had. It had the desired effect of making G laugh as well.
Only mentioning this because I try to find something funny in everything G goes through so there is a little lightness. Doesnt always work but we manage most of the time.
I am away next Friday for a week break thank God. A mate is staying to make sure G is OK and cook for him so I can relax for the first time since his stroke!
Hope you get some news soon. Waiting is horrible.
x