This is a post for those supporting someone living with kidney disease. Supporting someone living with kidney disease can be rewarding, confusing and everything in-between. Knowing what’s the right thing to do at the right time isn’t easy. You are doing brilliantly.
How has the experience been for you? What’s been the hardest part, and what has helped? Is there something you wish others better understood about supporting someone with a long-term disease? Your experiences matter too – share your journey today.
Thanks for making this space for carers friends and family. Its hard adjusting to the diagnosis and having to learn so much so quickly. Its also really scary when you can see what your person is going through while trying to remain supportive and reasonably upbeat. Its good to have this space where carers and those who are affected but do not have the disease, can share experiences.
That’s great to hear. Really pleased that this will be useful for you as a carer. I hope that you’re able to having some really worthwhile conversations and to connect with others in a similar situation.
Hi Hetty, I too know that feeling of trying to be supportive, whilst having your own fears and worries about the future. Both my husband and son have a hereditary kidney disease. My husband was diagnosed in his 20s and had his transplant in his 40s and my son is currently at stage 3a aged 17. It’s a constant balance between enjoying the present and quietly worrying about what the future may hold.
That’s a lot for you to manage. I hope that both your son and husband are doing reasonably well. I hope you have some friends or other support to share your worries with. This chatroom seems like a good space too, which is good to have
I just wanted to know how you get on with having to do so much to support a partner/spouse and never really getting space to ‘complain’ about how overloaded and over stressed you are.
I do my best to keep my frustration under wraps but sometimes it gets the better of me. I don’t want this situation for my husband or for me. I want him to be well and able to do the things he used to do. I know its not his fault but sometimes it is so infuriating. I don’t want to be horrid or unkind. Just sometimes it feels so unfair and hard going for me, and then feel tremendous guilt because of course he is the one struggle with CKD. Do other carers relate to this?
Hetty, I certainly have exactly these frustrations and I suspect that every carer does at some point or other. It’s perfectly normal. Your daily life is restricted, not because of your own health problems but by someone else’s. I try not to sink into a solo pity party and usually bring myself round after a good talking-to in front of the mirror. Last year, after 7 years of caring, I took a week away from home just to recharge my batteries. It did me the world of good but, as you say, the guilt was real! Please don’t feel you’re alone in feeling angry/annoyed/ill-done-to. And as far as I’m concerned you’re more than welcome to vent your frustrations on here. Look after yourself, love. xx
You are not alone! My hubby had both kidneys removed due to cancer (2000 & 2019). He’d had no kidney problems whatsoever before that. The cancer had spread in 2019 and he was introduced to the home dialysis nurses as a stage 4 terminal cancer patient. We have been haemo-dialysing at home for 7 years now, thanks to a shortened (due to Covid) course of immunotherapy! He’ll be 70 next month. I have coped fairly well on the whole but have had a few wobbles. The hardest part for me is that we can no longer go away for a week’s holiday. Hubby managed to book holiday dialysis in Hampshire a few times, close to where our daughter and son-in-law live, which was lovely. Now he seems very reluctant to be away from home, even for a short break. I bit the bullet last September and went away for a week on my own but the feeling of guilt was real! Feel free to ask me questions or have a rant on here or by message. I’m sure you’ll do just fine - if I can do it, anyone can!! x
Hi thank you for your words of encouragement it’s means a lot.
We love to go to the Lakes and have had an amazing experience with the unit based in Ulverston, there is also one in Kendal. We have been fortunate to get my husband slots whenever we asked. These breaks keep me sane. We desperately miss our travel, we have not been able to go abroad since pre Covid due to his EGFR being too low to take the risk. I have a long weekend in Spain with girl friends in July which I am looking forward too. Just hoping the current Middle East situation is sorted soon. I’m sure like yourself the guilt will kick in as the dates get closer.
How long did it take for the nerves to subside doing home dialysis for you ?
It took me quite a while to gain confidence in my ability to cope with dialysis duties- I’m naturally a nervous person. Our HHD nurses had the patience of saints while I was training! They didn’t let us fly solo until everyone was comfortable with it. I must admit that I now don’t even think about what I’m doing. It’s become so much of a habit. And the nurses are at the end of the phone if we need them. Hubby had problems with his fistula two or three times a year so we see them regularly.
I’m glad you’re both managing to go away for holidays. It’s a shame you’re missing out on foreign sunshine breaks! It helps when you’ve got something special to look forward to and I’m sure the break will do you good. You will be able to relax and the guilty feeling won’t last long. Just tell yourself you’ll come home raring to go and you’ll both benefit from it. x
My parter in his early 30s has stage 5 CKD and we are looking for donors for his second transplant. Hard to stay positive with two very young children and not let it get me down. I feel so useless. Does anyone have any advice? I feel terrible when I get upset about it as I’m supposed to be the positive one
Oh @Rachel12345, you are most definitely not useless. Carers are often the glue that hold families together in times of stress. It’s a heavy burden to bear as everyone depends on you so much. I can imagine that having a small family is even more so. Is there anyone who could take the reins for a couple of hours a week so that you can go out for a coffee, take a good long walk, or even take a nice long bath? Time to yourself is important. You can’t be there for everyone else if you’re ill. I learnt this the hard way, which is probably true for most carers! You can always speak to your GP about your situation - there may be a possibility of a care worker being available. It is important, I think to let people know how you’re feeling. I have started writing in a journal, which I don’t let anyone see as they’d be shocked at the amount of worry, moaning and anger in those words. x
Hello Rachel. Try to stay positive , as I feel that your state of mind will find it’s way through to your husband. He will be well aware of your feelings and your levels of stress because he is your husband and knows you better than anyone. My wife and I can virtually have a conversation without a word being spen , as we always seem to know what the other is thinking or feeling. Do not ,under any circumstances, under value yourself. You are the most important person your husband has. I know , I am a very lucky husband myself. Best wishes B
Hi Hetty, I relate to your thoughts & feelings. Whilst I will do all I can to support my husband any way I can I get very frustrated and at times have selfish thoughts, what about me !
Caring for someone 24/7 is hard work both mentally & physically. At times I feel I have lost my identity and lifestyle. Restricted by having to consider him first before making any plans with friends is difficult. He has been live on the transplant list for 12 months now, we prey for that all important call, I keep telling myself it’s not forever, things will change again when he gets his donor.
95% of the time we are all good, we have conquered home dialysis, which gives flexibility at least. We get through the 5% of difficult times together. Support is vital any which way we get it. Good luck x
