Waiting for a transplant. He’s currently on Dialysis 3 days a week. We did PD dialysis for about 4 months had some bumps on the road. But we back on Hemo. My husband has a fear of dying and sometimes he can’t shake it. To the point he just kinda bottles it all up. I want to be there but don’t always know the right thing to say. I just wish I could change all of this. Any suggestions.
Also are some of you experiencing night sweats. Since being on Hemo he’s been having lots of night sweats.
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Wifey122
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HI Wifey, Unfortunately, in late stage, death is part of the picture. You might want to ask to speak to a counselor or nurse trained in hospice or even palliative care. Your support is gracious and loving. We all face this as we progress with our disease. But then, we all face death in some manner in life. Turning your thoughts towards living the best life RIGHT now is how we all make it through difficult times. Talk to the team he is connected with for transplant to see if they have counselors.
Sorry for what you and your husband are going through. Your husband is going to die, we all are. Nobody gets out alive. About 20 years ago I was misdiagnosed and thought I was going to die in 3-5 years. I was in my early 60s. I came to terms with that. Accepted it. Lucky for me it was a misdiagnosis and I know that is not the case with your husband, BUT, if he can accept he will die, if not now, but in the future then he should be able to lose the fear. I know I did. He should be putting all that energy into healing himself.
I would suggest that you join a care givers support group. You need support for yourself as well.
Your husband could speak with a psychologist about his fears. Fear takes so much energy and robs any happiness from life regardless of the cause of the fear.
Very well put. We will all die including getting run over and all life has a risk. I think live with hope and enjoy every day as who knows what tomorrow will bring. I crashed to GFR 8 and it never occurred to me I might die and it was a valuable lesson; enjoy what might seem like simple things as money can't buy hope or happiness. A friend of mine with cancer put it well at the end she was glad it was her and not her 19 year old daughter.
I agree with Bassetmommer---we all have our number and that number can be pulled at any time. But as our bodies wear out, we become more accepting of the end. Our bodies tell us when it is time to go. Apparently, your husband is starting to check out before his time, which will likely speed up the process. People have fears of being forgotten, regrets that their life was not fulfilling--- fears and regrets. Talk about death.
There are other people in the same boat as your husband. My mom counseled others going through chemo when she herself was going through chemo. There was this family friend who was paralyzed from the neck down who used to call my mom up and cheer her up.
And above all, don't let him drag you down that rabbit hole of depression with him. All you can be is positive and not afraid to talk about it.
I get it. When you have a disease that is terminal where death is eminent without medical intervention with reliance on a machine to keep you alive it can really instill a helpless, hopeless feeling. And then going through the transplant evaluation process feeling like you have to prove you’re worth saving- it’s all very daunting and takes away your power as well as chips away at your self worth. It’s hard not to go to the death thoughts sometimes. Yes, we all die, but ckd is a slow smoldering feeling of eminent death that looms over your head. I try to focus on my second life, the one I will hopefully have with my new kidney but in the meantime there are a lot of bumps in the road to getting there and unknowns. I do have faith and trust in God and God’s promise beauty for ashes though and keep my eyes on God to carry me through. And that helps me.
Hey, you didn't mention how old your husband is. I'm 69 and just starting PD this next month. I'll throw in my 2 cents worth here. A LOT of of what we feel during the long CKD process is mental. Your husband is a good example of how that mental anxiety can express itself. I will offer one thought to you about your situation, and I know this might not be what others might express, or feel natural for you to do, but the biggest help you can offer your husband is to somehow convince HIM to seek out resources for support. It's wonderful that you have joined this forum and are seeking help, but until your husband makes the step to reach out to others, you are going to feel frustrated at not being able to make much of a difference. Us dudes suck at doing this, so it will be important HOW you encourage your husband to seek support. Not sure if he's a good listener and will listen to you and take what you discover to heart and act on it or not. You can let us know if that's the case. If he is not a good listener, or is too deep in his depression to listen, the best you can do is provide information for him to digest over time and use other people that are already available. Possibly order some of the magazines offered by kidney resources like AAKP's "Renal Life", print articles to leave on the kitchen table for him to "find", talk with his primary care doctor and get him to suggest a good counselor to your husband, get the social worker who is associated with your dialysis center to work up a plan to help (they all have them) by just stopping by in a setting where that social worker would normally be crossing paths with your husband and ask him if they could meet to go over another topic, such as diet, or medication, or whatever, and then work in talks about his depression during the meeting. The social worker will know how to do that. So the point is, use the resources that are naturally already available to your husband. Do NOT feel you can, or have to, handle this on your own. It takes a team to handle CKD's physical requirements, it will take a team to also deal with CKD's mental requirements. Keep us posted! God Bless all the family support people who are in this forum. Your's is a tough job, knowing when to step in, and when to step back.
Thank you all so many kind words. He’s 32 and I’m 38. He not against therapy, we have talked about it a few times. I think I’ll bring it up again and also look into getting so of the magazine. Maybe that could be a resource.
I posted the following previously. I strongly recommend finding a therapist that is experienced helping people with chronic illness.
In addition to the often seen plea of “how do I find a renal dietician” I’ve noticed some seeking help finding a therapist. Talking through our thoughts and feelings as we learn to accept/acknowledge/manage our situations can help ease the depression and anxiety that often accompany chronic health conditions. While EVERY therapist says they can help patients with depression and anxiety, there are therapists that specialize in helping people cope with medical illnesses. In the US, most health insurance plans cover mental health treatment. Your first stop should be your insurance plan to find out what therapists are in and out of your network. Get the entire list, not just the first person the member help desk gives you. There are several online search engines that can help narrow your search. Psychology Today and Good Therapy let you search by different key words. There are many different types of therapy. I suggest you look for therapists that specialize in Acceptance and Commitment (ACT), Mindfulness-Based, Solutions Based therapy. I personally did not find Cognitive Behavioral Therapy helpful, but many others do. There are also professional organizations for different types of therapy. Since I knew I wanted an ACT therapist I searched the member list of their professional organization for local therapists. Look for therapists who facilitate group programs for people with chronic pain or cancer. Read the descriptions provided on provider profiles. Look for key words like chronic illness, chronic pain and health psychology. If you find a few options, then make appointments to see 2 or 3 to find a person who is a good fit. Frankly, I’ll suffer through appointments with a surgeon who has terrible bedside manner if they are the best cutter in town, but therapy is different. Therapy isn’t helpful if you don’t find a therapist you can connect with. Hmm, drafting this I realize there is a need for a more indepth article to help CKD people find a therapist... Best wishes
Hi Wifey122. I'm a caregiver (now more of a team player) for my hubby. Caregiving is such a hard job - we're often with our spouses 24/7. People think it's the doctors, the nurses, etc. - but we're often the ones stepping in and actually relaying status reports and making hard decisions. It's a lonely place. And you're at a crossroads with your current observations at this time. I found that becoming proactive was helpful for me and for my hubby. I found it helpful to draft up a plan of action or a decision tree...if this happens, we will take this step. When my hubby was in denial and didn't want to consider a transplant, I stepped into the appointments and moved ahead on it. He suddenly joined in enthusiastically. When he had health setbacks and I saw him failing, I quietly climbed over his objections - calling in the medical professionals or telling medical staff he needed to be hospitalized. I determined at what point (after talking to a nurse) when I would call an ambulance etc. Sometimes the decision making occurs over a few minutes time. There was a time when I struggled to support my gasping hubby (with a-fib) on a rollator down a very long desolate hospital hallway. He needed a wheelchair, but I couldn't shove both with our bags. We finally arrived at the clinic, exhausted, and I immediately blurted, "I can't do this anymore. You're very lucky I got him here. Please do something!" The moment I took the lead, things changed for the better. I personally couldn't bear to be part of a downward spiral that didn't need to happen. Interestingly, with intervention, my hubby's mood always brightened and he often thanked me. You're a wonderful couple and you truly care for your hubby. You're also very young - a death sentence shouldn't be in the cards, I'd put that on the back burner. We managed to secure a transplant for my hubby at age 71, so it's highly likely there is optimism that your hubby will get his too. So think it through a bit - since your hubby is already on a transplant list, maybe now would be a great time to double list at another center (see sites below) with a bright record, or maybe now would be a good time to bring in a social worker or therapist, etc. Perhaps planning a gentle exercise class would be beneficial. Perhaps he would like to do things alone and talk to a private men's group group led by a man on dialysis (had a transplant too) on Facebook: Kidney Warriors: Men's Support. The groups holds zoom calls and become great friends. When you have a plan, it becomes his plan too. And lastly, please don't forget to have your very own plan in mind for yourself. Plan for things which yourself which keeps you centered and charged. Remember the adage, "You can't pour from an empty pitcher." Sending you all the encouragement in the world that you're able to smooth out the bumps in the road and have a great outcome. Please keep us in the loop. Blessings!
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