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Any carers out there? Feeling overwhelmed.

IPF_Carer profile image
15 Replies

Hello community! I’m new here and hoping to pick up tips on how best to care for the one you love when they suffer from IPF.

My husband was diagnosed in late 2017 and despite meds, his condition has predictably got worse. He started ambulatory oxygen a couple of months ago which we thought would be a life-changer but he is still struggling massively.

I’m 54 and gave up work in 2020 to be with him all the time. I try to stay upbeat and optimistic for him and make sure he is as comfortable as can be whilst keeping everything running. Some days I feel a bit overwhelmed and what the future holds does keep me awake at night.

Any tips from carers on how to keep going much appreciated - or just sharing experiences would be welcome. Also keen to hear from IPF sufferers on what carers can do to help!

Bit of a longwinded intro, sorry.

15 Replies
floating_ profile image
floating_

I'm not a carer, but my mum is my main carer. She gets support from the local carer's hub and also gets counselling every now and again, she says these things help massively. She also does still go to work as it's a "break" for her from looking after me, my dad usually helps out when she does if I need help with something and she's not here (or my brother or sister in law!). Spread the need out basically so it doesn't just fall on her, even though she's my main carer.

IPF_Carer profile image
IPF_Carer in reply to floating_

Thank you Floating! Virtual hugs to you and your fab carer-crew 🤗

strongmouse profile image
strongmouse

My husband has IPF along with rheumatoid arthritis and diabetes type 2. The IPF is fairly stable at the moment. I agree with floating one of the best ways of getting support is through your local Carers Group. They will understand what it is like, provide support and give information about any other sources of support locally. It is really important to look after yourself and keep up some of your interests, but difficult to do!

My husband sometimes just wants to have me there at medical appointments to add anything he has forgotten and to make a note of what is said. Sometimes he needs to talk it over and the best thing I can do is listen, ask him what he thinks, to give him space to work out how best to manage. He wants to be as independent as possible and dislikes me fussing.

All the best to you. It isn't easy.

IPF_Carer profile image
IPF_Carer in reply to strongmouse

thank you Strongmouse. Looks like your hubby’s got quite the cocktail - can’t be fun. Thanks for the tip, will research local carers’ groups.

strongmouse profile image
strongmouse in reply to IPF_Carer

Yes, he has. It seems he gets on an even keel of managing one thing and something else comes along. As I have various health issues too I think we prop each other up! I find the information on here really useful.

We remind each other to remember all the good things there are still in our lives. We don't know what the future holds, and try to take the positives e.g. when he is stable. I am not burying my head in the sand, but simply grateful for what is today. Ask for help when you need it. If you can't get it from one place see if there is somewhere else you can ask. We were amazed over the Covid pandemics at the kindness of people in our local community. Hope you find some good support for you and your husband.

helenlw7 profile image
helenlw7

I’m a carer for my husband. He is in the early stages of dementia and several other conditions but not IPF, but I thought I’d tell you about a Facebook group called Mobilise. It’s a group for unpaid carers and basically offers support for the safer.

Ergendl profile image
Ergendl

As others have said, surround yourself with good support, through friends, family and agencies, and your church or faith organisation if you are that way inclined. When I cared for my previous husband Bob, who died in 2003, I also got support from Social Services who arranged a regular carer to give me time off during the day to get shopping done and other appointments, and were able to organise respite care for when things got too much. And just try to take each day as it comes: don't think too much about what will happen tomorrow.

It can feel a lonely journey, but there are a lot of us out there, willing you on as you work your way through each day. Wishing you all you need at this challenging time xx

sassy59 profile image
sassy59

Welcome to you. I’m carer for Pete who has COPD amongst other things. I have support from family and we get along quite nicely. I’m very aware of needing further support in the future perhaps but will cross that bridge when I get to it.

You’ve had some great replies so hope they help. Caring can be hard at times but also rewarding.

Thinking of you and you’re dear husband, xxx

Thepainterswife profile image
Thepainterswife

Hi and welcome to the site 😊 I care for my husband who has stage four emphysema so I’m sorry I know very little about your husbands condition but I can empathise with someone caring for a loved one with all the worry and challenges that come with that. I was fine for many years but when I retired (not through choice but because caring as well was just too tiring) I found the lack of company and living with the illness 24/7 quite depressing and then Covid hit and the lack of a social life made matters much worse 🤦🏻‍♀️ One thing it taught me is that no matter how much support your loved one needs if you don’t look after yourself both mentally and physically you won’t be able to give him your best . The best thing I did was joining this site and along with a couple of good friends who I’m able to meet up with for just a couple of hours every two weeks or so it’s been enough to keep me sane - we’ll almost 😂 I have two dogs who get me out for a short time each day and im a keen gardener The night time worries and dark thoughts will always try to take over but I just give myself a sever talking too , it takes practice and there will always be bad days but you do become adept at dealing with everything. As others have said get as much support as you feel you need and check in here for advice anytime and enjoy the humour and banter. 😊xx

leo60 profile image
leo60

I just wanted to say hello and welcome :) xx

peege profile image
peege

a warm welcome from me, i can only empathise.

Just to mention, the number for the helpline is 0300 222 5800 9-5, Mon to Fri. As well as respiratory nurses & counsellor they have a benefits adviser you could have a word with to check you're getting all the financial help you're entitled to. Thinking of you. Peege

Morrison10 profile image
Morrison10

Hi, as widow don’t have carer because of my PCD I was born with, my younger daughter comes to help me two or three times a week. However when I was little younger and fitter looked after late husband who had 3 operations on his spine, spent each day lying on settee in pain. Then prostate cancer hit, and reliance put on his PSA blood test always low, so treatment refused until he was really bad, and eventually died. Sorry it’s sad, but please remember that Its known that PSA test is very unreliable, but suits NHS to ignore it. Jean x

hillclimber1 profile image
hillclimber1

Although I am no expert on on IPF, I am a carer to my wife who has stage 4 COPD (emphysema). I live in Spain so there is not much support from family or other groups, other than this great group. Upon the advice of someone else I have now joined mobilise on Facebook.

I would endorse much of what other people say. I went through a stage of becoming overwhelmed, asking all kinds of “what if” questions. In the end I tried to focus on things I could actually change or influence. It turned out there was very little that fell into this category. So it helps to simplify things. I can overthink with the best of them.

It is vital to look after yourself. While you may focus completely on your husband, and his condition, it is actually your well-being which is as important, if not more

Best wishes and stay strong.

Biofreak profile image
Biofreak

I am a carer for my husband who was diagnosed with late stage IPF in July 2020. Because of lockdown I struggled, prior to his diagnosis, to get any kind of serious attention for him from Gps. After diagnosis he was immediately started on ambulatory oxygen and drugs to slow down progression but were ineffective because he had deteriorated so much and quickly needed oxygen 24/7. However he was listed for transplant which he got in June 2021. I won't go into that because your question was about how you can deal with the emotions and practicalities of caring day in day out. It can be very lonely and even if you have friends to give emotional support, you are still on your own at the end of the day. I have found that having a routine around the essentials that you need to do daily helps. The essentials being the things he needs help with. Organising and cooking for meals and necessary cleaning and driving him to appointments. I have some close friends who I speak to and message frequently so I still feel part of the world at large. I take him with me sometimes when I go shopping and he will use his mobility scooter. It is very tiring and our lives are nothing like they were. It takes a while to accept the situation you find yourself in and if I'm honest I still mourn the loss of the life we had before he became ill. But accepting it is necessary. Of course I find this group constantly reminds me that I'm not alone. I also don't think about what the future holds because that's when you get overwhelmed. I just think about what I have to do tomorrow and my wall calendar is my constant reference. I try and remain positive especially when talking to my husband. We have film nights in our house and watch our favourite films, sometimes just him and me and other times our daughters come round and join in. We are all different and cope in different ways. I haven't joined any carers groups but you may want to depending on how much support you have. You can message me any time if you want as I realise I'm rambling. Above all make sure you don't forget to care for yourself.

Karenanne61 profile image
Karenanne61

I've just spoken to my husband and he said it's actually hard to offer advice cuz everybody and their circumstances are so different. Also, what is helpful today may not be tomorrow. However, his overarching philosophy is don't worry until you've got something to worry about, 'keep your powder dry'! It's also important for him to spend time doing his own thing, he volunteers for a local wildlife conservation group and goes birdwatching. We have very different interests! But we make sure we have fun together too, e.g. last night we saw 'The Lion King' in London and tomorrow we are seeing a comedian in Chipping Norton.

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