Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

How do help post treatment

BBumble1
Posted by

Hi all, well my husband has oral cancer at the very base of his tongue (the part of the tongue that is sat down part of the throat it is a large one but has completed his month and  bits worth of chemo and radiotherapy, its now 9 weeks since he has  finished and the dietitian and his doctor are keen that he start eating soft foods and mobilizing and want his in three weeks time to not be needing his N.G tube and feed any more. But I can't get him motivated he tries some yogurt once says it taste horrid then gives up trying the only time he moves off the sofa is to go to the loo he lies all day in the sitting room with the curtains pulled  under a sleeping bag watching T.V and I just can't get him going! I have tried being mean by bursting in opening up the curtains telling him to get up and go for a short walk but he just tells me off and shuts up the curtains I have tried the gentle approach and tried to tell him how he has to start trying even though I do get that he must be feeling like death warmed up but he HAS to dig deep and just do these things till they start to become automatic and he just gets angry and tells me to go away and stop nagging him. I am worried about his job, they have been very supportive so far but if he doesn't start getting back on his feet and trying to get back to work even if its just for a couple of mornings that they will let him go and although I work we are both on low wage and I need his input to help with shopping and utility bills. I have depression and this week I just had a huge melt down at work I have been signed off by my doctor and advised to contact Macmullan for support , I have been  left to cope with EVERYTHING since his treatment began because he has been unwell but its been hard although I do most of the running  of the house I have had to also taken on the few duties like going shopping and the cooking that he usual did plus he also used to help me by doing the odd little jobs for me too like filling our 13 guinea pigs water bottle or shop so of the fresh veg for me if I was working late but now I feel I am on my own and he doesn't care how this is effecting me  all he talks about is how bad he feels and makes excuses why he won't try to do more, I have tried to suggest ways to tempt him with food, I have said about feeding with the tube at night but he says the sound of the machine disturbed him which I just think is another excuse  as I find it quite quite. I am desperate and I need some support and I don't know how to help him I can't get him to move or  improve I am worried out of my mind about his job, his health the effect this all having on his body and I can't talk to him without him getting angry and telling me how I don't understand just how ill he feels, I feel I am under so much pressure the doctors and directions look to me to help with his recover to badger him to eat and mobiles and get going but I can't do it, he will not do anything for me he won't mobiles with the feed either even though he has been told he can he says the movement of the tube makes him feel sick, but it seems EVERYTHING makes him feel sick, , drained I want our sitting room back I want to wash the throw and sleeping bag I want to be able to sit in my sitting room with the curtains open watching something I want to rather than him just dominating it all and digging his heels in every times I have these chats with him about getting going, its like he just doesn't care, he wants to stay sick for as long as he can so he doesn't have to anything! PLEASE HELP ME. 

src60
Posted by

Hi , sorry to hear about your husband and the impact that it is having on you both. This conflict between patient and carer is quite common especially when the patient feels they have lost control of everything else so when challenged will fight back against the person they feel can take it.

Perhaps the best thing for you would be to speak to one of the experts on the helpline here 0808 808 0000 it is open 8am-8pm 7 days a week.

I wish there was more I could do to help, but perhaps just knowing you are not alone might help.

<<hugs>>

Steve

BBumble1
Posted by

Oh Steve,

      Thank you so, very very much I will indeed give this number a ring I really could do with talking to someone direct, thank you.

Becky

Needing friends
Posted by

I can understand the immense pressure you feel you are under, you have our virtual support, use this page to vent your feelings and as Steve suggests speak to Mcmillan, your gp, whatever support you can get, both emotionally and financially xx

Niobe
Posted by

It used to be said that despair was the sin against the Holy Ghost. it seems that your husband has despaired.

Yes, he is tired, yes he has had a terrific shock ( I don't think it is possible to understand how drastically such procedures affect the self-image)....but I think it is a downward spiral. The longer he lies on the sofa, the more tired he will become, and the more accepting of his condition.

I had a  slightly similar experience, when my husband just refused to eat , he said the tube feeding him was perfectly okay and he wasnt hungry. As he was in hospital, the ward sister and I agreed that we would just take the tube out! he started to eat ( ate very and plenty once he got started).

The only advice I have for you is to refuse to be responsible for his care and his attitude. Yes, that sounds hard, I don't mean give up caring about him, but don't let yourself be made responsible for his lack of progress. There is a tendancy ( well, more like a rule) that the  carer or nearest family member is somehow made responsible for this, when often there is nothing they can do. I have had this with both my husband and my mother, they both have a will of iron, the idea that I could somehow 'make' them do what the doctors wanted was nonsense.

So when the doctor tells you to 'make' him do something,tell him that he refuses. Ask him how you are supposed to 'make' him follow their advice. Maybe they will have some magic wand, because you haven't.

And stop badgering him. It hasn't worked, so you might as well give it up, at least that will make a better atmosphere. Take a deep breath and tell him that his future ( and yours) lies in his own hands. Then go and give the guinea pigs your undivided attention, perhaps they will be grateful.

Good luck. It is suprising how often people do suddenly come back to themselves ( especially after a gentle prod)

xxxNiobe

BBumble1
Posted by

Thank you so much for your response, all these wonderful suggestions for help and advices has really helped me to start to feel better. so thank you.

BBumble1
Posted by

Niobe, what a little start you are, I can't tell you how much reading your response has help me feel better.

I came to the same conclusion this morning that perhaps I need to just walk away and let him get on with it, if he wants to do it his way than I just need to let him and leave it at that because I am not helping helpself  by trying to think of ways to get him motivated as you say you can't 'Make' him do anything. I feel guilty as its not my nature to be hard and put myself first for once but  that is all I can do, its down to him to make the change. In some ways reading your response makes me feel like its ok to be this way and that others like yourself found this to be away to cope and deal with them as well. You are right the pressure that these doctors and dietician put on us carers, they do make you feel like we have some magic wand or some will over them that  can bend them to our will and we can't!  and its not fair to put that on us. You are right I have tried to help my help has been rejected now its time to just leave him to it and look after myself and of course my guinea pigs too.

Thank you so much you have given me a much needed lift and reassured me that it's ok not to have all the answers and that sometimes the best action is to just walk away and leave it to them to work it out. Your a total star in my books.

Many thanks

Bumble

Miss Kitty Litter
Posted by

Hello,

I feel like I have found my British twin. Although I live in the US, I have been reading  this site for almost two years. .

My husband just finished  his  second treatment therapy sessions, chemo and radiation, for small cell lung cancer.. My life has recently gotten to be very similar to yours. I can literally say I think I understand. This  time the treatments have seemed harder on him. He got weak, lost 23 pounds, mostly muscle, has been falling down and hurting himself. On top of all this his hip replacement is loose, and he needs major surgery to replace it. We cannot get a test, an aspiration, done, because it yields no fluid so we do not know if it is infected or not. For the last two weeks he has had delirium and will be tested this coming week. The doctors ordered physical therapy and nursing care. As for me, I have called every agency local to me for a caregivers group and NO ONE  has anything.

Every day has been so stressful. He is a very typical guy who is as stubborn as can be. He does not want me to regulate his meds. A terrible battle, because I know he is not taking them as ordered. He also has had episodes of delirium. We do not know why yet.

To top it off we just bought a bed he can sleep in that raises his head and feet, and he has become incontinent so I got bed covers etc, etc. I am completely overwhelmed, I do all the household chores, shopping, billing, cooking, laundry and more laundry. We have no one close who helps, but two neighbors who offer.

So, please vent I hear yo as if you are sitting on my couch with me and we are chatting.

The  tests we  are given are sometimes absolutely not understood. I do not understand why this is going on.

You are not alone.

Carolyn

BBumble1
Posted by

Carolyn, my goodness me, you put my meltdown to shame, what a terrible time you are going through at the moment, I wish I lived closer then I could come help you, It's no fun having bloody minded man for a husband, they want you there but when you reach out the slap you hand away, I truly do feel I get where you are coming from. You want to wash your hands of them but at the sametime there is a little voice that won't let you just walk away. and you are going through so much more.

I did smile about  the issue you have with him about not taking his meds correctly I found my husband was just as bad for that! he is meant to do mouthwashes but refuses and then complains about his throat is sore and how the mucus is thickening and making him feel ill, but if he did his mouth wash with the aspirin like he is meant to then this problems wouldn't be so bad but no will he listen nope! In the end I had to live his medication to him, firstly at the start of treatment they just kept giving him so may different things it was hard to keep track of what did what sometimes he would come home from the hospital with and I kid you not a shopping bag full of medications! half of which he never uses.

But in your case with your husband having episodes of Delirium I guess you don't have that luxury of leaving it to him, I have to say that must be quit ea worry for you and I am surprised your doctor hasn't referred him to hospital as the cause could be anything from not taking his meds properly to a water infection to a virus or even low white cell count. My husband  did not have a smooth time when he was going through his radio and chemo treatment and ended up being admitted on three occasions for flu, then low white cell count and he ended up having a blood transfusion on that visit and when he got himself too dehydrated from vomiting so much he ended up with low potassium. Its had to recommend  what you could do seeing as you are in the states and your health care system is so different to ours. do you not have a cancer center you can call when your husband deteriorates like this? it seem terrible that you are being left to cope all alone , have you tried speaking with doctor maybe they could help get something set up for you.  

One thing I am learning is somethings are down to my husband to do, you can only do and take so much, I must say, my lasts vent at my husband about him not trying and how I have melted down and ended up taking a few days at my mums he does seem to have perked up a bit he has start coming on short walks with me each day and today I got him to eat a small ice cube size bit of jelly! he didn't like the texture but it didn't give him any problems that yogurts were so do I dare say I may have found the food to bridge the gap to get him on the road to eating?? I don't want to get too hopeful because he wasn't very impressed so it might be the case of making him eat a cube 3 times a day till he starts doing it himself or wants to up grade to something ,or nicer!!

I know it feels like their is just not enough time in the day to deal with EVERYTHING! so don't try, just do the things that are important to you. the rest can wait, even if it means having to skimp on the house work, I have always been quite fastidious about the house work keeping the toilets and bath room thoroughly clean, but I can't do it I just do not have the energy to stay on top of it all so I have had to make do with putting a bit of bleach down the loo give it a scrub and then just wipe it over with an anti bac wipe, not my usual style but that's all I can manage and some weeks I don't even manage that gross I know but you can only do so much before you frazzle out and just need to spend some time on yourself and if that means giving yourself a day or tow or a week off from the routine then do it, also make sure you give yourself sometime out each day even if it is just sitting in the garden with a cup of tea for half an hour  or more if you need it. We are wheels that have to keep going and we cannot keep going if we don't take care of us, yes your going to feel guilty and yes that dum ass little voices in you head saying 'You know you should be doing...' and pricking your concise well tell it 'I am having a day off! so jog on!' and then blow a loud raspberry at it, if anything it will make you laugh and feel a bit happier or maybe that's just me. 

Either way Carolyn you need to chat and vent and raspberry your way through this then you go girl! and I will be right behind you doing the exact thing ;)  and of course we are all here for each other , the advice and responses I have had recently have been such a life line really helped me to stay positive and known that its ok if you brake your not meant to do this all alone, so keep going we are with you.

Bumble xx

Miss Kitty Litter
Posted by

Becky, Dear Becky,

 I am overwhelmed by your kindness. What can I say. A couple of days ago we visited the oncologist and had a down to earth heart to heart.

He ordered evaluations for physical and mental concerns.  The office has a social worker, and I asked to speak with her and I did. I told her I am angry from being so stressed and gave me some places to call for help. I had tried six places and no one has a group I can go to. The wait time in the area is a couple of months for an appointment. They are all very concerned about money and what insurance we have. We have tons of insurance, I taught school for 35 years, my husband is retired Air Force Colonel. But, what I need is a bit of sanity. We love the UK. We have spent about two months in the UK, mostly England, traveling and loving the country. we are also hooked on the British TV shows.

But, here we are. Oh, who knows why, but here we are.

Thank you for your genuine kindness. I truly appreciate it.

Carolyn

Here is a story I wrote about the trips to radiation therapy....
It is earlier then usual for us to rise, but today starts a new plan to help my husband.
Thirty treatments, thirty trips, thirty early rises for our trip to the building in the woods, 25.3 miles away.

Not quite sure it is a trip, a journey or an experience or anything else you call it, but we will go, on time when we need to. I will make sure we are ready every morning, dressed, liquids and a snack, dressed warmly, off we go.

There it is, the tan building in the woods, with no roadside sign. As we approach, you can see glimpses of the building in the woods and know thee turn will be soon.
Parked on the side, we manage to go in, anticipating his turn. There we find the kindest faces, the welcome like no other. Everyone is so understanding and truly  know what you are going through. Immediately, you become a part of an accepting family , who although you never met them, you will see again and again. The people who help you with treatment and the people there for treatment.

The chatter begins around the puzzle table. Puzzles get done quickly as the patients file in and out all day.
How many treatments are you having, what number are you on, what kind of cancer are you being treated for, if I may ask. Everyone joins in or listens attentively in the warm environment created in the waiting room. The faces vary from happy faces to sad.

How can I possibly write about radiation treatments for I am not the patient, but the caregiver.
Everyday we plan our drive, getting up by 6:30 a.m.  Dressing, coffee, car ready and warmed up if needed. Is everything off. Lights, coffee pot unplugged. House alarm set.

The traffic can be a bit challenging as the roads on 98 are being widened. Lots of out of state cars, trucks going to work, SUVS, cars, texting, people dialing and talking having breakfast in their vehicle on the way to wherever they are going. People do a lot of things during their commute.

The stores stay very still as we all whiz by. Traffic lights turn red and green. The flashing walk signs display how many seconds are left before the light will change, either hurry up or wait for the next light. You get to know the road, where are the manhole covers like potholes, where are the roller coaster dips in the construction areas, where do lanes shift left and right and back again.

The holiday decorations went up and are now all down. People who came to visit for the holidays have gone home. New families have arrived for a break from the cold up north.

Jersey barriers and hundreds of orange cones, and Acme barricades that line the roads, make the ride look like a racetrack.

It will be February soon. Just seven more treatments, and then we wait for a new PET scan.

Waiting. Nothing is like waiting for test results for any medical problem.
Some are just more difficult then others. We all have family and friends who have waited for results. No one wants to wait. Do you breathe deeply for days, or exercise if you can, or read if you can concentrate, trying a new author to be distracted. Nothing feels right looking from outside your life while you go through hell.
We only talk about when the cancer has gone away, again, and feeling stronger and healthier. There is not any discussion about "it" coming back. We never considered that prospect the first time it came.  Now it is an internal fear, for me but not discussed. I am sure my sweet husband has thought it as well. His sleep is troubled, as he talks  during garbled nightmares.


But, it is Monday once again and time to go to the building in the woods. The building where you feel safe, as you might when snuggled under a wonderful familiar comforter.