Its been an up and down couple of weeks. Grief is my main feeling right now. Loss of the man I once knew, and the loss that is in front of me. Yes, this is self indulgence, and sometimes you have to look life right in the face.
As a near-carer, I find hubbys ups and downs rather hard to live with, as does he. He continues to work from home, and gets tired easily. Is on antibiotics continually, and has had an ear infection for the second time in a couple of months, so is on another antibiotic as well.
This is going to sound cruel, and there are times when I just wish it was all over, or that he would get well. Don't want to lose him, and have to take each day as it comes I guess. Trying hard to trust that things will go as they need to, slowly, and that my kids will also be able to cope with this horrible process of losing him to a wretched disease. Sometime soon we need to have a proper family conference to talk everything through, at present we seem to be tiptoing round the subject and not facing it at all, and at the same time, we need to move forward. Off to the solicitors next week, to sort out wills though, and I want to put our bank accounts in joint names to cover all emergencies. Hubby is not happy with this prospect and it fighting it, but I have to do this.
Anyone else find ways to do this??
hugs
steph
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stephns
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I think the family conference is a good idea...its really hard to face this stuff but it makes it easier once its all been said....my mum has sencondary cancer so we have been through this dilema recently, she found it difficult to face but once all the practical stuff was sorted she found it easier to move on, she sorted her will and power of atourney etc. and we made plans about her care etc. we havent talked much about it since but we have a plan, which we have both found comforting.
we all go through times when the reality of our situation comes crashing down on us whether we are the carer or the "sufferer" its best to face it...if we continually brush it under the carpet we will be worse off in the long run. Have a good cry and grieve a little, then move on.
hope this is helpful...thinking of you all
Mrs Sx
I am so sorry to hear about your situation and can only agree with what Mrs S is saying, Take care xx
...and then I read how other people are suffering and I think...what am I worrying about...you are all so brave, you leave me speechless. Big hugs to everyone and thanks...
hi, my husband has ipf and emphysema and last week was told he had 30% lung gas transfer. this has gone down 20% over the last year, so I know exactly what you are going through. We have been married for 40 years and have been through a lot, but this beats all. He knows he has a terminal disease, he jokes about being on death row, yet he still insists on trying to do things and knocking himself sideways. I get mad at him and to be honest the neighbours must think am a right haridan, always going on at him to stop it, sit down, look at you now, etc. He doesnt seem to have the capability to pace himself and throws himself into things as if he's ok, then hes blue, and asleep for hours, not eating, and he's getting very irritable, not surprising I do understand, but after living with a placid man for nearly most of the 40 years, I understand what you mean about the man you have already lost, both for emotional and practical means. I tell him I dont mind doing all the things he considered his but he doesnt like it, his main interest was his garden and now it has to be mine, and to be honest I would be happy with pots and flags, but he tells me what he wants doing then watches me doing it wrong. gawd if we didnt laugh we'd cry. My son asked me today if it was time for a family conference but I keep putting it off. I say he has a terminal disease, I never say he's dying because thats not what I want, albeit inevitable. He had a stroke over 20 years ago, and when he improved we made a will then, and despite being totally out of date its still the only one we.ve got, so not sure about what to do there. Money has alwaysbeen in joint names but he has never known how much bills cost cos I have always sorted it, so thats a worry off his mind I suppose. Never really looked at the practical side of this illness, your post has made me do this and I think we should consider a talk about that. He has no insurance because all his ailments have made him practically uninsurable so for the last few years I have been putting into an isa, and calling it the first funeral fund, whoever goes first will get that, when its the other one, the house will have to provide the funeral money, the kids know this. So much to think about, and not what we want to think about. We just have to love them as long as we can, I still nag him, cant change the habits of a lifetime, and he still moans, cos neither can he, he still has some of his dry sense of humour, when that goes I will know hes going downhill, meanwhile, steph, keep yer chin up and we are always here for you to vent your spleen,.xxxx
Thanks all, and amagran. I was out today with a friend, and he reminded me that I actually do not need to physically "care" for him at all right now. When he is well, he gets about OK, its his breathing that sometimes gets to him. I don't have unrealistic expectations about his life, and I do want him to try to do more. At present he is very scared, having had such a ghastly encounter with near death in feb. I take him tea every morning and a bit of cake, just to boost him, and I know I still resent doing even that, because I feel he can get up and do it himself. If I don't stop, then he will start to lose the motivation to do it himself. There are plenty of folk out there in the world who have copd, and get about anyway. All alone! Having accepted their state. They just get on with it. I hate to keep telling him to do more, and am also quite scared of not "doing it", but I know I have to, because, until I need to help him to things he has to try to do it himself, or he will give up. Scary but true. So another difficult step to take....so many in this life journey. In the end this is about educating him to look after himself first and make choices to do, or not to do. I cannot stop him deciding to not do what I would like him to do, and I won't be a carer until I actually need to help out. Does that sound too cruel???? Hugs..steph
Wow sorry I just can't get around the fact that the bank accounts have not been joint all along and (you are worried about sounding too cruel ?) This in it self shows me the type of personality you have to contend with day to day. You say he is fighting going to solicitors next week.. Please make sure this happens as you have your kids and self to think about . This is about protecting your family. He seems to be about power and control. I'm just an outsider looking in. Forgive my comment if i'm off base only you know the true character of your husband. Take care xxxx
its important steph that you look after yourself too, I do meet a friend in town and we go for a coffee and have a giggle, and my kids support me too and will dad sit to allow me to have a day out to the theatre with my friend now and again, it was once a monthly outing but its diminished to once every few months now, but you need that break, that cup of tea, you are going to need your health and strength, so do take care. xx
richard starts pr next week, I would say that would do your partner good as it not only helps physically, it teaches about the illness and the can and can't dos, maybe suggest it to your gp or the hospital, let us know how you go. xx
Oh its awful to watch the person that was be someone else, but also frustrating for the person as well I can understand your hubbys frustration when he feels you are doing it wrong because what ever you do it wil be wrong , that was his, and his alone.
But in these circumstances I think fact need facing and wills and last wishes need to be set in place, and to get over that hurdle so you can all stop dancing on egg shells and get on with enjoying as much life together.
Sorry to hear you are struggling at the moment. In our partnership I am the one with the illness ( PF and pulmonary hypertension) but I am struggling to get my husband to make wills and I am 68 and he is 70! I think he just doesn't want to face reality. He panics when I have a bad day or am extra breathless. I have always been the gregarious of the two and made friends more eaily. I am worried sick that when I am gone he will be totally isolated. He doesn't go out unless it is with me or he is just popping to the shop and back - no friends and our sons do not live locally either.He already suffers with anxiety and I think is suffering a level of depression but will do nothing about it.
Like amagran we have a joint bank account but I am the only one who looks at it or takes note of how much things cost.I worry less about how he will manage financially after I am gone but worry more about if he will ever buy himself new underwear or other clothes unless I am there to nag
him into it.Where the young man has gone who I fell in love with who would only buy his 'going out' clothes from Cecil Gee or similar I cannot imagine!! Mind you he must look at me and wonder what happened to his wife - I have gone up three dress sizes since being on steroids for the last five years - don't even recognise muyself!!!
Still I am determined to make sure I am still here next August to celebrate our 50th wedding anniversary and hope to see our eldest grandson start secondary school next September.Important to have goals.
I do think that it is just as hard for the caring partner as it is for the 'patient' - there is nothing you can do to make a loved one better and you suffer from the disease as much because your life is on hold. I feel very bad because I was at work for a number of years after my husband retired - loved my job and worked rather long hours. I kept saying that once I retired we could travel and enjoy ourselves. Sadly that phase lasted for only a very short time, the illness kicked in - I feel very guilty!.I struggle not to be defined by my illness - there are times when I think that there is nothing else left of me - probably makes me a bit crabby to live with!
thanks maggie, you have more or less told me how richard is thinking, he says he feels guilty that i have to do everything now. Because he retired through ill health ( a stroke ) when he was 47, we never had the retirement thing, I started working full time when he couldnt, when I retired life wasn't much different as we never had the money for holidays anyway. thanks and take care. xx
It is very important for your husband to do as much as he physically can. I often do more than I should and do have an exercise programme that I do at least three times a week. This involved stretch exercises with seraband, lifts with little weights, swings with the same weights, and my exercise cycle. I also get out and walk around the supermarket with my wife, and go to the park with the grandchildren if the weather is nice. I stay as active as I can, and that is while carrying ten pounds of oxygen cylinder on my back when out and about. The exercise is hard, but is what keeps us fit to breathe. If your husband has not done pulmonary rehabilitation, ask the doctor to get him on the programme, or your respiratory nurse.
I understand how you feel, and while I am the sufferer realise, more so when I have an exacerbation, how frightening it is for my wife. But hey I am not ready to die yet. Where did terminal disease come from? We can live so long with copd that we are much more likely to die of something else. I have lived with copd since 1987, am now on ambulatory oxygen, expect in the end I will be on home oxygen, but intend to live another ten years. You maybe surprised to know that those on oxygen can live for more than 15 years after going on it. A positive attitude, and exercise is needed. I have spoken to my wife about death, I have to be a realist. We should talk about these things anyway. But that does not mean I am going to pop my clogs anytime soon. Life is not fair, but there are always plenty worse off than us. Terminal is being told you have cancer and only have six months to live. With copd, like I have, you can live very many years even if the going is hard and we have to be careful of, and sometimes have to deal with infections.
Please encourage your husband to be more active. He will be much better for it. Ask him to read blogs of those that fight this illness that I call the best. He can read my blog at bitz-and-bobz.co.uk/copd
A long blog with lots of entries as i have been writing it for very many months. All the best to both you and your husband.
I am in a similar position with my dad. At the end of june he was in a&e in a real state with a chest infection and a dr who has never met him before said he was in endstage of his ipf and not expectex to live more than 4 weeks. Well as you know, it's a lot more than 4 weeks since the end of june, and although it was devastating it did make us focus as a family on practical things like dad wants to stay at home, does not want 'heroic measures' to keep him alive etc and we got a very nice solicitor to come to the house and update their wills. What i find difficult is the longer this goes on, the more i think of dad how he is now, and not the man he was. Also, i am the youngest of my 2 brothers and 1 sister but i am closest
geographically and most practical in terms of doing the actual physical care with dad and although i'm 41 i feel like saying 'i'm the baby of the family i shouldn't have to be doing
this!!!' I do think making plans helped my dad move on with thingd and as a family we have gone past the tiptoeing denial stage. Keep your collective chins up everyone : )
I am in a similar position with my dad. At the end of june he was in a&e in a real state with a chest infection and a dr who has never met him before said he was in endstage of his ipf and not expectex to live more than 4 weeks. Well as you know, it's a lot more than 4 weeks since the end of june, and although it was devastating it did make us focus as a family on practical things like dad wants to stay at home, does not want 'heroic measures' to keep him alive etc and we got a very nice solicitor to come to the house and update their wills. What i find difficult is the longer this goes on, the more i think of dad how he is now, and not the man he was. Also, i am the youngest of my 2 brothers and 1 sister but i am closest
geographically and most practical in terms of doing the actual physical care with dad and although i'm 41 i feel like saying 'i'm the baby of the family i shouldn't have to be doing
this!!!' I do think making plans helped my dad move on with thingd and as a family we have gone past the tiptoeing denial stage. Keep your collective chins up everyone : )
I am in a similar position with my dad. At the end of june he was in a&e in a real state with a chest infection and a dr who has never met him before said he was in endstage of his ipf and not expected to live more than 4 weeks. Well as you know, it's a lot more than 4 weeks since the end of june, and although it was devastating it did make us focus as a family on practical things like dad wants to stay at home, does not want 'heroic measures' to keep him alive etc and we got a very nice solicitor to come to the house and update their wills. What i find difficult is the longer this goes on, the more i think of dad how he is now, and not the man he was. Also, i am the youngest of my 2 brothers and 1 sister but i am closest
geographically and most practical in terms of doing the actual physical care with dad and although i'm 41 i feel like saying 'i'm the baby of the family i shouldn't have to be doing
this!!!' I do think making plans helped my dad move on with thingd and as a family we have gone past the tiptoeing denial stage. Keep your collective chins up everyone : )
I am in a similar position with my dad. At the end of june he was in a&e in a real state with a chest infection and a dr who has never met him before said he was in endstage of his ipf and not expected to live more than 4 weeks. Well as you know, it's a lot more than 4 weeks since the end of june, and although it was devastating it did make us focus as a family on practical things like dad wants to stay at home, does not want 'heroic measures' to keep him alive etc and we got a very nice solicitor to come to the house and update their wills. What i find difficult is the longer this goes on, the more i think of dad how he is now, and not the man he was. Also, i am the youngest of my 2 brothers and 1 sister but i am closest
geographically and most practical in terms of doing the actual physical care with dad and although i'm 41 i feel like saying 'i'm the baby of the family i shouldn't have to be doing
this!!!' I do think making plans helped my dad move on with thingd and as a family we have gone past the tiptoeing denial stage. Keep your collective chins up everyone : )
I am so sorry, but I know exactly how you feel, we are going through the same thing at the moment, I had a talk with my sons and they came to our house whilst my husband was in hospital. We had both, in the past, made wills leaving everything to each other and in the event of our deaths everything went to our sons.
I showed them where all the documents etc. were and I had made a list of our pensions and direct debits that would need cancelling on both our deaths, or if I was ill or unable to do things myself if my husband died first. If I died first then my sons could sort everything out for my husband as he would not have a clue where to start.
He doesn't think he will live through the coming winter as he has had pneumonia three times through the summer and nearly died then.
I, like you, sometimes wish, when he is having a really bad day and nothing I do for him is right and I am fetching and carrying all day long (I am 70), that it would be over ,then I could get some sort of life before I die, I know it is selfish but when you are ill yourself, and waiting for a full body scan to see why you have lost 2.1/2 stone with NOT dieting and have to change your hospital appointment because he says you can't go because he is seeing a physiotherapist that day and his illness comes first, it makes you very bitter and think what the hell am I doing, he does not give a damn for my health. I have told him that if I died because of the fact I can't get to my hospital appointment my sons would put him in a home, they would not stand for his awkward, selfish ways. He says, there is nothing wrong with me, I couldn't do the things I do if there was, he is living in cloud cuckoo land.
I resent every single day I am now with him, he has oxygen, nebuliser, wheelchair, walking stock, and every disability aid known to man which I have bought for him to make his life easier but getting out from behind these four house walls is absolutely impossible, the only time we go out is to the hospital for his appointments, we are going today and we get taxis to and from the hospital.
So don't worry, you are not alone, there are many, many people in our position and to moan and groan on here makes you feel a hell of a lot better as no-one understands what is going on more than the people on this website.
Thanks for all your comments. I wake up in the morning at the moment, and with so many unknowns around, I feel worried and scared. I try to bring up the subject with hubby, and he becomes quite down about it all, so I find it difficult to broach the subject. If we don't have something organised how will we move forward? I am concerned that we won't have enough money to live on, at present he is working from home, as he always has done, which involves a lot of sitting. With this ear problem (infection) he has not felt like going for his cycle rides, so exercise has taken a back seat for a few days. I imagine he may be depressed, and he will not take any pills for that, if he is depressed, he says he is not, I am unsure of that. He sleeps Ok. No oxygen at present. It is so hard to remain positive with what feels like all the worries of the world on my shoulders and not knowing how we are going to manage or what the future is going to look like. My anxiety is pretty high, and I have to manage that and try to bring things up when we are both a little more stable methinks... its one day at a time right now.
I do get out and do other things and can leave him alone, and it is SO good to be out by myself and doing what is "normal"...it makes coming home so much easier.
I don't know about Pulmonary rehab. He was not keen on the idea, said he would "try it for himself and see" which didn't go down so well with me. Told him I thought that was a selfish thing to say. He doesn't open the post that often, its just a habit of his, so I am concerned that he will miss out on a letter from the hospital offering him rehab - do I go and interfere and open "his" post? or leave it and hope???
I salute all the carers out there, also great admiration for the honesty on this site.
you are in my thoughts ,everyone has a different approach and coping method, however "who cares for the carers" syndrome. can't you get help allowing you to get a little "me time". allowing you all to be a little more gentle with yourselves.
sending you all a big hug x
Hello
Please remember the helpline and the counselling/emotional support service we offer is here to help you and offers emotional support in a nion-judgmental and confidential manner. You can call as needed or a series of appointments can be arranged. I am a qualifed Counsellor and Cognitive Behavioural Therapist and can offer some strategies to help with any rumination (worries - chasing cars syndrome) or simply someo-one outside of the family to talk to.
Thanks for the response Helen Chinnery. I have tried the helpline, and making an appointment to be phoned back tomorrow really didn't cut it for me. I needed help at that moment, not tomorrow - so I rang the Sams..that did help. It would be so helpful if the helpline was manned and open without appointments. And I do understand the constraints on volunteer workers on helplines, as I used to work on one myself, AND was the project assistant for that charity! Never thought I would need it myself :o(
So I managed to talk through things with hubby and we are concentrating on getting him better so that we can move forward during the appointment with solicitor next week. Once he is more on a level, then we can do things towards the future. I do go to therapy anyway so I have a space to let go. Just need to get my anxiety a little more under control. :o)
Hi steph - my thoughts go out to you its so very hard being the main carer of a partner and feel like your losing the man you once knew. My first partner became ill when I was thirty and he was only 46 and like you my emotions saddness fears and worries for the future anger resentment all mixed in a whirl wind. And I too just wanted to have things sorted.
He however had a different coping method...
He was feeling guilty that he had become ill and that I was going to have to do every thing - he was also fustrated, fearful and in denial difficult to live with and having none of it!
But with careful timing one day at a time with - slowly the practical things got sorted and once you manage to get over this hurdle of wills and last wishes and dancing on egg shells.
They can be shut in a draw and you both can - enjoy the life you have one day at a time.
Remember to give yourself 'me time' carers need surport too. Thinking of you. Take carex
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Just like busses...! 
A Proper Pain in the 
Looking for guidance 
Made it home ok thanks all. Another day another saga. 
The man in his kingdom 
