Hello everyone, I’m not use to being on forums but I feel so lost and alone, I don’t know who else to turn to. I’m 28 years old and the oldest daughter of my family. We recently found out my mom (52) is at her end stage of renal disease. She just had a catheter inserted to prepare for Peritoneal Dialysis. I’ve been physically and emotionally drained watching her start this process and we haven’t even started dialysis. I will do whatever it takes to care for her but it hurts me to see her sad or that she feels a burden to us. I try to tell her how much we love her and that we wouldn’t stop caring for her. I’m trying to stay positive and strong for my mother but it’s so hard. What should one expect when going through this type of treatment? I’ve been doing online research every night like a new obsession but I get an anxiety attack every time. Please help.
Preparing for a new chapter: Hello everyone... - Kidney Dialysis
Preparing for a new chapter
Hello, Ac320
What a wonderful daughter you are to support your Mom. The transition to dialysis is a difficult time for all but not impossible. Rejoice that there is a solution. And your Mom gets to do this at home. Find out what you can and become educated on dialysis will be a great way for both of you to lose some fear about the process. I am not sure if she is being trained and if so, ask to learn the process as well. Fear is generated from not knowing.
Having anxiety over this is understandable, but not helpful. Is there a doctor you can speak to about it?
Remember this, a lot of what you read is worse case scenarios. There are many success stories. I am going to recommend you check into the sister forum of this site for people who are on dialysis. healthunlocked.com/nkf-dial...
But you both are welcome here as well.
You don’t know how much your reply means to me. I really appreciate you taking the time to reach out. I have taken some kidney smart education courses with her and have explained to her a little about the process so she understands. She seems to be healing well but I did notice some pink bloody fluid going into her catheter drain now that wasn’t there yesterday when she saw the doctor. She did have to do some walking so I’m Not sure if that is normal but I will make sure to ask the doctor today.
I believe we both will be trained but I will be closely monitoring her and assisting her with it. She’s a strong little lady but it’s so nice to have a community who can understand what we’re going through. I will definitely check out the sister forum since I wasn’t sure where to start but I really appreciate the guidance!
I feel for you. A few weeks ago, I went through the same situation you are now facing, except that my worries involve my husband. The emotions run from despair, to fear, to depression, sadness, etc. I couldn't eat, sleep, and think except about that. I was jittery, my thoughts cycled endlessly. To witness the slide downward in my husband was frightful. The insomnia and anxiety dragged me down and made everything worse. (The night became a nightmare.) What really helped me was to reach out to this group like you have done and then I checked in my personal doctor. Both helped tremendously. The doctor listened to me and prescribed a non-addictive anti anxiety med and a list of therapists. The group here refocused my thoughts on how dialysis can actually improve life for many and, for some, can be abridge to a transplant. And the reminder that no one lives forever. But what matters is to keep one's thoughts on today...living it well, not fearing for tomorrow, doing the best one can. Controlling our "super computer brain" is essential. Try to pick out one or two things a day that you can complete...be it cleaning a room, organizing a few medical or legal files, etc. As Bassetmommer said, research and learning is empowering and chases away fear and indecision. And then, at the end of the day, congratulating yourself for the steps you took. Look at the news and notice that no one is promised tomorrow - covid19, accidents, etc - are taking out people everyday yet your mom (and family) are present and here right now for quality time. Embrace this. As the quote goes, “There are only two days in the year that nothing can be done. One is called Yesterday and the other is called Tomorrow. Today is the right day to Love, Believe, Do and mostly Live.” (Dalai Lama XIV)
So how am I today? I'm doing better. It's not perfect, but I can function again. I've not used any medication nor have I sought out a therapist...yet. I've managed to round up on my thoughts, forcing me to think in the present - this moment, this day - and only focus on good things that the future can bring...and reprimanding myself if my thoughts stray into dark corners. I know that I have empowered myself as resources are on hand if I need assistance. And all of this helps me from free falling again down a dark hole. Caregiving is unbelievably hard. We will do our best. Our lives will be purposeful and richer for it. And we will help each other the rough spots. Sending positive energy your way. I care.
Darlenia, thank you so much for your kind words and response. Life definitely doesn’t teach you how to go through these tough times but I’m happy I found a community.
That quote is beautiful thank you for sharing. I will write this on every room to remind all of us how important it is to live in the present.
It may not always be easy but I’m glad I have support and people who have gone through the same. And it’s comforting to hear you are doing better. Please feel free to message me if you need a lending ear, I’m a good listener!
I never thought the day would come that I would have to step into these shoes but it definitely opens my eyes to appreciate all the caregivers out there.
Keep in touch!
You are to be commended on being a loving supportive daughter! That is most impoerant to her transition to dialysis! If she is like most, her health as been impaired for sometime . . . and now will return to some normalcy. I was so sick and had several hospitalizations prior to starting dialysis. The build-up of toxins takes a huge toll on you . . . but once you start dialysis, you see significant improvement physically.
Hello Caninelove,
Thank you so much for reaching out and reading that gives me much comfort in knowing she will start to feel better. It’s so hard to see how weak she is and that I can’t take that pain away for her. And she cries because she sees how much I care for her like bath her and take her to the restroom. And so far she’s recovering well with her catheter in place so we are very ready to see how her first flush session will go. I feel I will be more at ease once she feels better going through dialysis.
I will be praying for improvement for your mom!!
I have been doing hemodialysis at Fresenius for 2.5 years.
Will your mom be on a transplant list?
Aw thank you so much and same to you as well! I will keep many of you in my thoughts and prayers during this journey together.
I just talked to the referral nurse today. I didn’t realize how much goes into getting on the waitlist but I did make the first step to try to get her on there. I’ve read online that mostly siblings are a better match. I’m curious how likely a child can match with their parent or is that even possible because of the age gap? Because her insurance is out of network we can not move forward until her Medicare is approved next month (hopefully).
I’m 66 years old and was placed on the transplant list January 10, 2020. I have no living siblings and never married so have no children. So I’ll receive a deceased donor kidney. I could look for a living donor kidney but have opted for a deceased donor kidney.
There is a living donor exchange option in the USA. I believe that that program would allow you to donate to someone else and your mom would receive a living kidney from someone else. But I think that children can serve as living donors for their parents.
Be sure to talk with your mom’s nephrologist about these questions. Or you can contact a kidney transplant center with these questions as well.
Jayhawker
You are blessed to be part of a family that loves each other so much. Your mom is lucky to have you caring for her. You should definitely stay connected with others- those who have gone through dialysis but also the people in your life who can support you in other ways.
I went through PD five years ago when I was 48 before I was transplanted. The month before I started dialysis and getting through the PD catheter surgery was the hardest. And then it got better from there. PD was sometimes uncomfortable but it also chased away the nausea, the brain fog, the itchiness. I regained some of my appetite and some strength and energy. And because PD is a daily treatment (unlike Hemodialysis), the toxins don't build up as much as they would if you're dialyzing every other day. It's a much more gentle approach and I never felt sick before or after doing dialysis. Remember dialysis means life. It is there to sustain your mom and replace some of the kidney function that she lost. PD allowed me to still travel and continue my daily life. Of course everyone's experience will be different but I do believe that once you understand what your limits are, you'll also realize all the things you CAN still do. I wrote about my experience in my blog which you can read about at dorislew.wordpress.com/2015.... I don't write in it too much now, but while I was going through dialysis I wrote about it a lot.
I highly suggest you stay connected to dialysis support groups like this one and especially the "Kidney Dialysis" online group. It is a safe place to be real and raw with your emotions with people who completely understand. But also include friends and family in your journey. I found many people wanted to help but had no clue how. That's partly why I wrote the blog, to give them a picture of what my life looked like and to keep them updated on my health and donor search. Occasionally I would receive cards or phone calls that came just at the moment I needed some encouragement. Letting others in on your journey gives THEM the opportunity to care for you. Receiving from others will give you strength.
Being the oldest daughter in your family, you may have the added burden of feeling like you are most responsible for your mom's care. Get the family involved too. Once your mom starts dialysis, you'll all know the different ways everyone can help. My 13 year old son was in charge of disposing all the tubes the next morning after a night of PD. Anytime I needed something (medication or food) I would ask them to bring it to me, especially when I was already tethered to my machine and could not leave the room. My husband made smoothies for me because I didn't have much appetite but it was a easier way to get nutrients in my body. Friends would go on walks with me too.
Information will also help you feel empowered. I did a lot of reading and researching.. I found a lot of info online and picked up literature at my doctors office. I kept a list of questions for my doctor at every appointment. Ask questions here on the forum too. As an earlier reader said, knowledge is power. It will give you a sense of control, but also helps you to advocate for your mom's care because you know what questions to ask.
Help your mom stay engaged in activities that give her joy. Our family made road trips with my dialysis stuff in the trunk, (and had some shipped to my destination beforehand). I still helped at my church or kids' schools, and I would sneak away when needed to do PD for 20 minutes - sometimes in the car if no room was available- then re-join the group. Of course with COVID19 you can't do any group activities, but my point is when your mom is ready, she can still do things, even if it's modified. Emotional strength will help her sense of physical well-being.
Keep us posted. I would love to know how you and your mom are doing. Wishing you and your family the best.
This was truly encouraging thank you so much for reaching out to me. I will take in as much advice as I can to help her have a better life. And will definitely read up on your blog. Thank you for posting!
It’s good to hear that she can try to fit some sort of normalcy into her routine. I feel so much better reading all these responses than I was when I first posted. I will keep you all updated as we continue this journey to fight!
Hi AC330, I’m a 48 year old woman from the U.K., who has been in peritoneal dialysis for 2 years now. Before I started dialysis I felt the worst I had in my whole life. Tired, drained all the time. Breathless with no energy, brain fog etc awful. The insertion of my catheter was pretty horrible and the training I did on how robust the PD machine made me think I just can’t do this.
But I did, after about 2 weeks of starting the dialysis I woke up in the morning and i felt so different. I felt happy, energised and couldn’t believe the change.
2 years on I still have bad days, but so many more good days then I did.
The moral of my story... I just wanted you to know that your mum will be ok. Dialysis is tough to start with but gets easier and trust me.
Your a good daughter and doing all this to support your mum is amazing. Hang in there and try not to worry too much. I’m sure you worrying will make Your mum worry more too. That’s what mums do! There’s a lot to learn, but it will all make sense in time.
Good luck and lots of hugs to your mum. xx
I am the caretaker for my son who is 43. His medication caused his kidney disease and together we decided on peritoneal dialysis. We tried doing this overnight and it worked well until the machine we used was waking us up several times a night. I think your mother, if she sleeps well and the machine works correctly, would be able to this. We had to change to manual, four times a day. This is working for us as it let's my son sleep through the night. Once you learn the system for either overnight or manual during the day, you will gain confidence. I would suggest you learn the process as well as any other family member that may want to help out at times.
I am sure you have many questions. If you are going to assist your mother, I would go with her to the learning/training sessions. There is always something to learn and I am sure she would welcome your support.
Your mother will also need somewhere to store the boxes of solution. She may need assistance getting a space ready. There are numerous supplies needed, so this is something you can do to prepare as well. Please feel free to ask more questions as you get further into the treatment.
I wish you the best.
I think there's a lot of great advice here. Going off of what I know and how I felt when I was on peritoneal dialysis; she's going to be home but it can get isolating if she's just in her room by herself while the machine does it's work. It's going to be tough for her but you can still show your love for her by being there whenever she needs anything. My family helped me with setting up my boxes and bags a lot of the nights. But also, there were some nights I wanted to do it myself to sort of prove my independence. I have a little different perspective here since I was 19 when I was on PD (21 now), but I can assure you that PD is a great option for her. Especially with COVID-19 going around. I think one think that sticks out to me from that time in my life is that I can appreciate who was there for me. I was probably hard to be around as I was often moody and just sad, but I feel I didn't know how to best react to what was happening. Your mother is lucky to have someone like you in her life and she's going to need a lot of love. I wish you and her all the best
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