Mom Just Had to Start Dialysis Unexpected. Any Advice How to Support?

My husband was on while we were waiting for a new kidney. I can tell you it didnt bother him much because he was strong and young but it did make him a bit worn out. He would typically go after work and do some computer work or watch a movie/tv while there. He went to a center where thats all they did which was nice because we could pop in and visit and they were there to answer questions for us.
Some odd things to remember and not panic about... she will likely get puffy the day after treatment if on a MWF treatment my husband was very swollen by sunday. Also she will drink almost nothing which is scary. I know we had to count all fluid intake in everything he ate. The fistula they install helps in the long term but it takes time to get it set in and working. Just keep positive for her. OH and her her know life is not over!!! We traveled all over the country and world while he was on. Even a Disney Cruise! So she might be a little down but not out!

My dad was on dialysis for four years before he died. He hated it. It is so draining. The morning was taken up hooked up to machines, and the afternoon with napping. Then he would have one good day. Then it was back to the machine again.

What to do - make sure she has a warm, warm blanket for during the dialysis. The process makes you feel cold. Be sure she eats after. Don't expect her to do anything but nap and sit after. Encourage what she's able to do on the alternate days. Plan visits from family or friends for those days.

Here's what else I did. I made sure my dad heard from me that it was HIS choice how long he kept this routine up. If he chose not to, we would of course miss him, but we would make sure he had the best care (hospice care) and we would support his decision.

If you mom has a support person she trusts - clergy, or counselor of some type, suggest or arrange a meeting.

My dad also had to fill out paperwork (medical directive / living will) that stated his wishes about final care decisions, before he could start dialysis. This may be a challenging thing for your parents to get through. You may want to help them walk through this and make sure they are clear about what they are deciding.

Dialysis was developed as a stopgap measure for people waiting for transplants, not as a maintenance routine. It is not a pleasant way to live.

I'm a nursing student and a classmate/friend is a dialysis tech (so we got her perspective) and we've learned about all this. One of the things your mom needs to know is the first year on dialysis is going to be the hardest. It takes the body time to adjust to the new set-up and that first year things can be particularly draining and hard.

There are lifestyle and diet changes that she will have to make and that's something you can help and support her through.

BUT also let her know that while changes will have to be made and that an adjustment period will be needed she can still have an active life and do things she enjoys. She may just need to modify things.

Definitely something to do while on the machine may help also. Will depend on how that goes for her. Each person is different. Some sleep, some read, some watch a movie on a portable, some do nothing but relax and let it happen (I mean there's not much else you can do really).

And as another person said ... TALK to her nurse at the hospital to get support set up. The hospital should have a social worker and/or counselor who can come in and get y'all going with support groups, talking about some of the other expectations and so forth.

The best help I could give my dad was my time. I would go to dr. Appts with him and be his ears. I would clean up the house. Many people sleep during dialysis-but my dad always said he couldn't understand how they did. He slept when he got home. The dialysis center will give her a blanket and stuff, but if she doesn't have anything to take with her consider getting her something-a kindle with chicken soup for the soul books downloaded, a handheld game, music player, etc-whatever you think she might like.
I think the best advice I've ever heard is to accept any and all help for you, for her, for dad. Reach out to people that offer and tell them how much it would help. A home cooked dinner or even coming by to visit and look over pictures/reminisce can go a long way.
Sorry to hear about your moms sudden health turn. My father was on dialysis for about five years and then had a call in the middle of the night and recieved a donor kidney!!

.... I almost cried when I read this.
My Dad was on dialysis. 3 times a week. For 3 years. Before he died.
And he did not live to get a transplant.

All the others below, gave great advice/suggestions.

But do know, that dialysis is VERY VERY draining... emotionally and physically and mentally. It is not fun, sitting there attached to the machine for HOURS 3 times a week. My Dad, would hate going there. And he hated the pain of the needle being stuck in his access arm. He got an ointment from his Doc, to "numb" the area before he went to dialysis so it would not hurt as much, but it still always did. And the area on his arm where he got poked all the time, became all lumpy. Being REPEATEDLY... poked all the time, it in itself is emotionally draining.

Due to my Dad's condition and kidney failure due to Diabetes, he became, very weak and frail.

Because there is kidney failure, you as a family HAS to find out, from the Docs, how to care for her, and regarding what she can eat or not, if that is also a medical concern for her.
For myself, I ALWAYS went to my Dad's doctor appointments with him.

Just having someone drive my dad to the dialysis center, 3 times a week for drop-off and pick-up, that in itself... was hard. Because, among my entire family, we had to adjust our work schedules so that someone, would be able to take him there and pick him up. And then, someone was always with him, at home, after.

It is very very common, that when a person goes through this, they get depressed or feel very hopeless. This changes your entire life.
If there is a support group of any kind, ask the hospital. And as "Caregivers" for her, it is beneficial for you all to attend a support group too.

Do not expect, your Mom to be all social and take phone calls. Don't make her. Don't expect your Mom to be like usual. She NEEDS to process this, in her own way. Let her.

My Dad, had emotional hardship with his condition too.
So it is not only your Mom who feels "hopeless." Instead of trying to make her feel "normal" try to empathize with her. Let her vent and say what she feels. With my Dad, he did not like talking to some people... because, they always disregarded how he felt, and would tell him things like "Get a grip. Just think positive. Its your attitude...its only a big deal if you make it a big deal..." And those remarks did not help my Dad. He once told my Mom that the only person he felt comfortable with, was me. Because, I let him be himself, and I was there for him. I didn't judge him. I didn't try to "fix" him or change him. I understood, that this was a process... and a HUGE adjustment for my Dad.
It is all about stages of grief. This IS a type of "grief." So remember that.

AND also, your Dad... will NEED help too. Mentally and emotionally. And practically. This is a HUGE adjustment for your Dad too. But you know that. Also know that... many men, when faced with things like this, may not even express themselves nor talk about it.
So with your Dad, you have to be real observant of him... his demeanor and well-being. See IF his habits changes... or if he stops taking care of himself too. Look out for depression in him too. He is a Spouse. Things like this deeply affects the Spouse. Too.

Do things, for them. From basic house upkeep to food. To errands. To making lists of what they need or are too shy to ask for. For whatever help they need. They will need help all around.

And, how will your Mom get to her dialysis 3 times a week? Who will take her for drop off and pick up? Is your Dad able to? Or not?
How old are they?

I assume she has a Renal Doctor.
You all need to know, what exactly... your Mom can or cannot do or eat.
Make sure you all know that.

Before you let them discharge her, make them contact the social services at the hospital. You need to know all your options for support, support groups, people who volunteer to drive them (even if you can, you need a back up), and you need the doctor to give you instructions on her emotional care. Like when does she need medication for depression or can she even take it? What symptoms are you watching for? Does she need a type of counseling (she is grieving her health)?

Ask the nurse tonight for a session with the social worker. Leave a note for the doctor on the chart.

She's going to be drained emotionally, physically, and spiritually. She's going to feel so tired and mentally she may even think of giving up.

They sit for hours at that machine then when they're done they just need to rest.

I think the best thing I've seen anyone do is just be quiet with the person and do whatever is needed. If your mom is hungry just go fix her something that she normally likes. If she seems tired give her a blanket and help her prop her feet up. Just be the helping hands she needs.

You have gotten good advice from the posters. Now, make sure YOU have a support group in place for you and any other family members. Take care of yourself during all of this or you will be no good to anyone in the family.

Caregivers get wrapped up in carrying for the person that they forget about themselves. I am a caregiver to my husband and I work (for me) so that I do not forget who I am. Yes it takes more but it is what is needed for me to survive. Have a plan in place for when you need a break and someone else can take mom to and from the treatment.

It is a shock to the system to find out you have to do dialysis because of medicine but it is not uncommon. I had a cousin have this happen this summer but she was able to get function back. So I will say a prayer for you and your mom that she will get function back and come off of dialysis.

the other S.

Help cook, help with errands, help with house cleaning. Other than the practical, just give them your love.

So sorry to hear of this and how it is affecting everyone. Of course be supportive, she needs encouragement as her life has just turned upside down.
Sadly, many kidney (and other organs as well) failures are due to medications. There will be many changes ahead for her and she will not feel well a great deal of the time, but not necessarily an immediate death sentence. Many people have a decent quality of life on dialysis, by making adjustments in activity and incorporating it into their schedules.

Truly there are many cases where dialysis is temporary and people can get off and get restored or improved kidney function. With new advances in the field of food science and nutritional epigenetics, there are many good outcomes. This is something you should look into, and it will be critical for her to follow required dietary changes for her to continue to improve her health.

Best wishes.
M., RN

my FIL is surely headed for this. he has diabetes and refuses to take care of himself. so while i have no good suggestions, i'm so glad you asked this, and am reading the responses with dread and appreciation.
khairete
S.