Today I received news that a family friend would soon be living with dialysis. I was compelled to write a letter as it is a road that Mama and we, her family, know all too well.
When I got the news today about your diagnosis, I looked out of my window and the light of the sky looked exactly the same as when we got the news that Mama would need to go on dialysis. I said a prayer for you that minute and my heart felt sad, just as it did a few years ago. While we were all very concerned and sad to hear this news about our mother, we were uninformed and overwhelmed as we did not really know anything about dialysis: would it be painful? how would this affect Mama? how did this happen? All we knew is that it was major. Add to this, Mama was adamant. She would not go on dialysis and called us all together to tell us so. We were almost desperate. While we did not know much about dialysis, one thing was clear: Margaret would die without this treatment as her kidneys were no longer functioning.
Eventually, thank God, Mama decided to undergo dialysis treatments under one condition. That we know that she was doing this for US, and that we had to be with her, if she was going to dialysis, so were we. Very shortly, our lives were completely changed.
Mama had to be at dialysis three days a week and we had to organize ourselves quick! It took us a few weeks to adjust and eventually we had it down to someone getting Mama ready to go to dialysis in the mornings, someone to go with her, someone to pick her up if need be, someone to be home to be with her. Was it easy? No. This entire family had to work together on our goal of keeping our mother alive and well.
The dialysis center will give you a bag and lots of information about what you will need to take with you on your treatments. We had to learn how to be organized and to have everything that Mama might need when she went to dialysis: a bag with extra clothes, aspirin, medicine, snacks, gum, water, blankets, small pillows, headphones to watch the small TV in the chair. My advice to you is to be like Margaret, take whatever you need to feel comfortable and secure NO MATTER WHAT ANYONE SAYS. If you need four blankets, one rolled a certain way, another to cover you, and a couple for backup, than you do it and do not give in to anyone. You are the one who will be undergoing the treatment for 3 hours or more, and you will get cold, anything that will make your time go by as peacefully as possible, do it. God love us, we tried to tell Mama “why do you need that? are all of these blankets and pillows necessary? etc. Your children will learn, as we had to, that, as long as you are able to make decisions about your care, then it is up to them to respect your decisions.
Please pay attention to how you feel and what works for you, or not. Some days Mama would come out of dialysis completely exhausted. However, she did need to take her medicine and eat something. Either we would have something hot and cooked ready or she would want to pick something up. Once we would help Mama into her bed, the BEST sound ever was the sigh she would let out when her head hit the pillow. I grew to love “Mama’s Time Of Day” — somewhere between 2 and 4 in the afternoon, where the house was quiet, she would either watch TV or look out of her window before drifting off to sleep. Please do not be afraid to rest, please do not try to stay up or awake for anyone if you don’t feel like it, naps will save everyone’s sanity and give you the rest that your body needs.
Sometimes the treatments will make your body cramp up or your blood pressure will get low. You’re lucky, you are able to walk and get up to walk off a cramp. Our mother was partially paralyzed and cramps were sheer torture for her. One thing that always helped Mama when her body would cramp was to eat something salty: lemons with salt, pickles, olives, chips. Sodium levels are low and it’s important that you tell the dialysis crew that you are cramping up so that they can help you out. Also let them know if you are dizzy ASAP so that they can make adjustments to bring your blood pressure up.
I don’t tell this to you to scare you any more than you might be. It will take time for you and the familia to figure out how things will go for you. I can also say that I have friends who are on dialysis, who drive themselves to and from their treatments, who handle the treatments well, who LIVE for years and years. I have one friend who has been on dialysis for over 10 years and is going strong. There may also be the possibility of a kidney transplant as another family friend was able to do. If you feel afraid, someone can always go with you to your treatments. One of us was usually with Mama thru her entire treatment.
Dialysis is not a death sentence. Right now, it is what will keep you alive and although I personally have not gone thru the treatments, I did learn how to make Mama more comfortable and, for a long time, Mama felt better (once she got used to the treatments) Although things were not easy, I would do it again in an instant if she could be here with us. You knew Margaret, quiet but she spoke up when she had to do so and speak up she did when it came to her care and what worked for her — I know that you will do the same and pray for you and the family to muster the strength and committment to make dialysis work for you the best way possible.
Let your family and friends be there for you. You are so blessed to have the prayers of an entire community, they would help you I know. Our family has already walked the road that you are just starting on. Any questions you have, any information you need, any fears you would like soothed, please call us. We love you and are here for you.