Parenting and Dialysis

[Wildrose]

I've been on dialysis for almost two years and it has been such a struggle, as I know it is for everyone. I have three kids, ages 17, 6 and 4. I'm not the parent I was before dialysis. I have no energy, limited motivation, feel sick all the time  , foggy brain/confusion, and I could go on... I am at a point where I really want to know how other dialysis patients with children handle their lives. I need to know if I'm doing enough, not doing enough, pushing myself too hard, not pushing myself hard enough. No one in my dialysis center really connects with each other, we see each other, wave smile and go on with our lives. I don't know who in my center has kids and who doesn't... granted most patients are a lot older than me. I know there have to be some members here on IHD that have younger kids. So please... share with me your struggles and how you get through your day to day life when you feel like crap and still have to take care of other people?
And if anyone knows of another forum or group for people on dialysis who have kids, to connect, please let me know. I can't find anything.


Rose

[Iona]

Hi Wildrose, I read your post with great interest as I have posted about wanting to become a mother (I'm currently on HD)...if you read that one I expect you had a very short answer for me in your head- !
I feel for you because I have experienced feeling very poorly when looking after and teaching children -  I had a class of 30, only I could give them back at the end of the school day whilst I recovered. If you're not feeling well you must be utterly exhausted and feeling life is a real struggle. I do sympathise.
What helped me was getting off PD and going onto HD- I had a few issues with PD that other PD users won't experience, I think it works very well for many. I can see you had some issues with PD too - what a difficult time you had - no wonder you've found it all a big struggle over the past couple of years. Don't be too hard on yourself. I had a transplant eventually which really gave me a new, more vibrant and easier life. Are you on the list?
Eventually this transplant failed and I returned to HD. I experienced all of those symptoms you have listed above and they only disappeared with regular HD. My consultant felt that i should start HD 'early' before symptoms became any worse and I am currently doing more hours than I probably need (3 x 3.5 hours weekly)but I do feel really well now. Apart from the hours spent at the hospital I feel life has returned to normal. I am buzzing around. I'm not answering your question but would it be worth considering longer hours or an extra short session of dialysis every week - a horrid thought but not if you feel better both physically and mentally for it? I wonder how you manage dialysis with children at home - are you in centre, or at home? A friend of mine has young children and dialyses overnight in the comfort of her home. Would you consider this? My friend is what you'd call a glowing example of good health on nightly HD (6 times a week). I know others who are well doing 2hours everyday, again, at home.
We have a charity over here (UK) which can supply a volunteer support to a family when needed - do you have such a thing in the USA that you could call on? If someone else could mind the children whilst you take a nap, collect them from Kindergarten etc would that relieve some pressure on you?
I do hope you get some responses from parents of young children - it's comforting and helpful to speak to others who are coping in a similar situation. You're doing the best you can and your children will know this and love you for it - NO doubt. Keep going Wildrose and good luck x

[Wildrose]

Thank you Iona for your kind and caring response. You made me smile as I read your reply and I am very appreciative of your encouragement. 
It sounds like you have had a horrible struggle on dialysis as well. Although I suppose that is the nature of the beast, whether we have kids or not.
Prior to kidney failure I was just trying to be the absolute best mom I could be. I was homeschooling my kids, cooking from scratch, cleaning, reading to my kids anywhere from 15-20 books a day (off and on throughout the day). Playing with them, dancing to silly songs, taking them to playdates, etc. I was baking 6 loaves of bread every single monday, I did all the deep cleaning, cooking, baking, etc.
Now... now I barely do any of that.  I guess thats one reason why I wanted to talk to other parents on dialysis and find out what they are capable of keeping up with on a daily basis. I know its never good to compare ourselves to other people especially when many of us on dialysis react differently to the process and have different symptoms. However I really am curious as to others experiences.

I felt so much better the short time I was on PD. But what I didn't like about PD was doing it every day, I hated that. I've enjoyed just doing dialysis two times (yes I'm lucky) a week because I can forget about it the other days. I currently can not do home hemo because my current residence is just too small for the setup and the supplies. I also am not sure I could ever learn to stick myself with a needle... but if I ever get into a bigger space I think I will try it. I have wondered lately if I dialyzed more often incenter hemo if I would feel better. But I somehow think I wouldnt... because if I went to three days of dialysis insteads of two, I'd have three days a week insteads of two that I am totally incapacited and sleep all day. I don't watch my kids on dialysis days, I cant. I go to dialysis, come home and sleep it off. Like a bad hangover. I'm lucky that right now my husband does not work on one of my dialysis days (tuesdays) and my oldest son who is almost 18 watches his brothers for me on saturdays. Awhile back my son wanted to start working on saturdays but couldn't and I had a horrible horrible time trying to find someone to watch my younger boys once or twice a month. My own sister refused and her boyfriend blew up at me for even asking. Then a lady at church heard that I needed help and she now organizes amongst herself and about 3 other people to watch my younger guys one or two saturdays a month, that is a big blessing.

Yes it would be such an amazing thing to have help with the kids, or around the house, etc. I DREAM, daydream ALL the time about how I would hire a housecleaner if I had the money. I of course don't have the money... but I imagine it all the time. There is no program to help people like me that I've ever heard of. I think there is help available for people that have limited mobility such as people that use wheelchairs or walkers but I think thats it.

I am married and my husband works 40 hrs a week, comes home and picks up my slack around the house. Whatever I didn't get to, which these days is a lot, he will do. However that goes as far as the surface stuff (like dishes, cooking).... he never scrubs the toilets, showers, washes the floors, etc so they only get done when I can summon enough energy which honestly is not often.
Oh my, please tell me I'm not the only dialysis patient that does so little. Ok, but then I do a lot... I just wrote all that and felt bad, but then I think about everything else I do. I'm the household organizer, coordinator, I make sure the bills get paid on time, I make all the appointments, field all the phone calls, deal with all the problems, take care of the kids, make sure they have everything they need, etc.

[Sydnee]

I haven't been on dialysis very long but I can sympathize with you. I was exhausted well before I started. Ed was able to do much more than I while he was on dialysis. He continued to work full time (3 days a week 12 hour shifts, plus 10 hour over time days when available) he would come home and fix dinner and on days off he would pick up my slack.

Before I started dialysis I talked with the older kids (17 and 14 at the time) about whether we continue to homeschool. They really wanted to. So they had to agree to help even more around the house and to help with the younger kids schooling. We switched to less mom needed school for all but the 7 year old. The 2 oldest went to all but science online.

I feel guilty that we aren't doing things, we don't go the library as often, we cut out all but 2 activities and church. We only make it to church 2 or so times a month rather than every week.

I don't sweep, I use a chair in the kitchen now. I can't make it through the cooking of a whole meal without sitting down. I used to make cheese and butter, when our cow has her calf I'm not sure I will be up for it.

But having the family together is still worth it. I haven't hidden anything from the kids.
You can only do your best and know that you are doing your best. The time is what the kids will remember, Right!
 

[Wildrose]

Before I started dialysis I talked with the older kids (17 and 14 at the time) about whether we continue to homeschool. They really wanted to. So they had to agree to help even more around the house and to help with the younger kids schooling. We switched to less mom needed school for all but the 7 year old. The 2 oldest went to all but science online.

I feel guilty that we aren't doing things, we don't go the library as often, we cut out all but 2 activities and church. We only make it to church 2 or so times a month rather than every week.

I don't sweep, I use a chair in the kitchen now. I can't make it through the cooking of a whole meal without sitting down. I used to make cheese and butter, when our cow has her calf I'm not sure I will be up for it.

Sydnee, its amazing how different people can do different things while on dialysis isn't it? I am so glad to hear that your husband got a transplant, that is wonderful!
I don't think I mentioned it above but we are still homeschooling. Well technically I"m just homeschooling one. My oldest who will be 18 yrs old next week is finishing up his highschool credits by taking college classes at the local community college. He just started that in September. He has been the one that has helped me with his brothers since starting dialysis, and unfortunatly he got behind in his work a bit because of it. But he is doing well now. My 4 yr old has a severe speach delay, he doesn't talk at all so I decided to enroll him in preschool this fall in the hopes that his being around other kids would help. Its a Christian preschool, they gave us a scholarship (otherwise I couldn't have afforded it) and he is doing well at three days a week. I am however struggling trying to keep up with schooling my 6 yr old who is in first grade this yet. He is not reading yet so he definatly can't do any work on his own yet.
Just out of curiousity have you found a curriculum for your 7 yr old that is less labor intensive for you than some of the others? I am using CLE (christian light education) but it still takes about 2-3 hrs a day..... and we haven't done any work since the beginning of December.  I would also love to be doing more work with my four year old as he is a smart boy and loves to learn, but any time I have the energy I have to concentrate on working with my 6 yr old.

I'm the same as you now, I can't make a whole meal without sitting down, sweeping is hard, everything. Cleaning up one room of the house can take me hours because I have to take a lot of breaks.
I also don't make it to church every sunday any more. I'm lucky if we make it once a month. My husband works on Sundays so its just me getting everybody up and going and its just too much most of the time.

I'm really glad you are able to keep your family together still and I would love to talk with you more in the future.

[smcd23]

What is your schedule like? My husband does hemo now in center. He was going mornings, and those days he'd pick up our 4 year old at daycare and come home and basically let him run around crazy until I got home from work. He had done PD at home prior to that, but had to stop after his failed transplant and has now been on hemo again almost 2 years. What we have found that helps immensely is him switching to nocturnal (now an extended night shift due to staffing issues) Currently he goes in after dinner at 7, so he usually has dinner near ready when I get home around 6. And then he leaves, says goodnight to our kiddo and heads out. He comes home around 11-1130 (in fact, he just walked in) and then will have a snack, we will chat for a few and head to bed around midnight. He has found this shift has helped him greatly with energy, brain fog etc and being able to do things with the kiddo. A big part of it was building up stamina again. It stinks for me because I am stuck here because our son goes to bed between 8 and 830, so if I need to run out for milk or something I have to wait until he gets home. But it gives him more energy and he feels better so I can deal with it enough. I am hoping they go back to the nocturnal because then he would go just before our kiddo went to bed and would be home around 2am and then go back to bed.

Our son has just started to learn that Daddy goes to dialysis and not to work (after the transplant issues and being in the hospital for almost a month, our son had major anxiety anytime anyone had to go to a doctor or any changes in schedule and routine) and if my husband tells him he is tired or worn out and needs to rest, my son will either go off and play or cuddle on the couch and watch a movie with Daddy. Thankfully he now seems to have more good days than bad.

Feel free to send me a private message if you want to chat more since it seems your youngest is about the same age as our only. I think I mentioned my hubby did PD also, and I think someone else mentioned that you could look into that - I can tell you some funny stories about doing PD with the kid, but it wasn't that bad at all.

I do think honesty is the best policy when it comes to the kids and how you are feeling- tell them when you're not feeling up to par, kids are great at empathy. When you are feeling good, try to work on doing things and going longer, or doing more than before to work on stamina. I know my husbands stamina took a huge hit and we worked on getting it back up, and now he can go play hockey with our son for an hour and still be good for the rest of the day. Took awhile to get there, though.