Dialysis Center Observation

[Redbomb]

I just switched to the "night" shift at my Dialysis Center, and I have to tell you all what I've noticed Monday night.

First, each of our chairs have a TV with headphones so we can sit and watch TV and not bother the people next to us (this is great!).

When I get hooked up, it's around 4:30 my time and I noticed an older lady Sitting getting Dialsys.  About 5:00, this elderly gentleman comes in, and pulls up a chair next to this lady getting her treatment.  He brought in a bag with sandwitches, etc along with his own set of headphones and a "Y" splitter.  They sit there eating Supper, and listening/watching to the TV.   He also was there on Wednesday night.  I'm pretty sure that it is her Husband, and I think it is so wonderful to see a husband so devoted to his wife that he comes in-center to sit and keep her company during her time in-center! 

Anyway, just had to share that!

[Adam_W]

When I was doing in-centre dialysis there were only two times I had visitors, and I never really saw any other patients get too many visitors either. However when I first started dialysis in Jan. '07, I spent two weeks in the hospital, and the associate pastor of my church would come almost every day and sit/stand with me during most of my treatment. That really meant a lot to me because kidney failure hit me suddenly and in the beginning I was pretty scared of all this dialysis stuff, and I really needed someone with me. Now that I do home dialysis, occasionally my dog will come in and give me the sniff-over as if to say "hey, why are you hooked to that big black and white noisy thing and you're not throwing a ball for me?", and sometimes my mom will come in and bother me because she knows I can't "fight back" when I'm on the machine (we have a lot of humour back and forth). I think that's really awesome when a family member or friend will sit and stay with a patient when they're having treatment.

Adam

[paris]

That is very special.  I don't think my husband could do that. He can't sit with me when I get IV infusions.  He is having a hard time dealing with the whole situation. I guess we all handle things differently.  Thanks for sharing.

[Ohio Buckeye]

Awww, that is sweet to hear Redbomb.
That was nice of yourAssoc.  Pastor to come and sit with you in the hospital Adam.
I'm sure it hlped to have someone with you during that time.

[thegrammalady]

my daughter came once to a session in the very beginning. however she doesn't do blood, so it was very hard for her. (which is why we don't do home hemo)  my unit there is a woman that comes every time with her husband. and a man who has various family members with him almost every time. at the unit in oregon, when i visit my family there is a lady that comes every session with her husband to. i start at 5:30am so it's kink of hard for someone to come with me.

[Sluff]

Talk about loyalty to your partner in sickness and in health. I can understand that we are all different and that it may be hard for someone to watch their loved one go through the dialysis session.

What is really special is when someone does this out of compassion such as Adams Assistant Pastor, who just loves people enough to spend the time with them.  I guess there still are some decent people in the world.

[angela515]

So sweet.

When my Aunt was going through chemo during the first months of this year, her pastor went with her everytime beause she was scared. he went to every surgery also.. and one time he was running late... my mom was with her and she told my mom she will cancel the surgery if her pastor don't make it in time to pray with her before she goes under.. he made it in time, and she had the surgery. He spoke at her funeral and you could tell he loved her very much truly so and made her at peace with dying.

[Rerun]

That is sweet.  I see it all the time at my center.  families come and help carry things and at the end they fold blankets and help pack up.  I don't have anyone.  I do it myslef, but I also don't have the pain in the ass husband who makes me feel guilty for being sick and ruining him financially.  So, I'll keep to just me and my dogs!

                         

[goofynina]

And as loyal (and freaken adorable) those dogs are to you, i am sure they do their best to make you as happy as they can.      

When i was in center i saw alot of that going on, where the spouse hardly left their spouses side, it was comforting actually.   When i was dialyzing in the afternoon and Sam would come and visit me before he went to work, all i would do was cry cuz i couldnt believe that was happening to me and i hated him to see me like that.    Thank God they switched me to the 4:30am shift and all i did was sleep through it (or try to at least) thank God for Benadryl 

[Meinuk]

My family was here in August - I hadn't seen them since November `06 (before I started dialysis).  I was so excited to have them come to the unit and sit with me, so they could see what was keeping me away from home (they are in London, I am in NY - I used to go home every two months)  But it didn't happen.  They were freaked out - even my coming home post-dialysis normal bandaged freaked them out.  And I had a small arterial hematoma which made my niece cry.  I was sad that they didn't get to meet the techs that I've grown to care about, but the whole experience made me realise how much they love me.  The reality of dialysis crushed them.  Needless to say, one of the saddest days of my life was when I dropped them off at the airport.

I never thought that it could be difficult for our loved ones to see us on dialysis.  Now I look at the families that visit in the unit with a different perspective - They are the brave ones.  Husbands and wives, sons and daughters - one woman has a 9 year old who runs errands for the dialysis patients while his mom runs her 3 hours via permcath.  Some times he is in the waiting area watching the cartoon network.  He jokes around with the waiting patients and the access-a-ride drivers.  I look at him when I am leaving the unit, and I think "these are his childhood memories".  Pretty amazing, and humbling - survivors aren't just the patients - they are also the people who are on life's journey with you.

[keefer51]

I don't know what i would do if someone sat with me during my treatment. The first time i was on my ex wouldn't come near me or the center. She hated it. Now i have been on again for three years and i have on occasion had a nurse or tech sit and talk to me for a while. I have seen many older people at my center have a loved one come in and sit a spell. It does my heart good to see this.

[Sluff]

It is harder than some may think, I remember sitting with my Mom during all her chemo sessions and all I could think was: Is all this going to work? Kudos to all those that can do this.

[Stu]

Before the rugrats arrived, my lovely wife would visit me every dialysis. She'd catch the bus there from work at the end of the day, arriving at around 5.30pm, and hang out till it was time to go home around 7pm.

I loved it, we'd watch DVD's, yack, play cards etc.

It was actually the most time we'd got to spend together since we'd been married, as I worked long hours before the ESRD hit.

When our to wonderful boys were brought into the world, the visits got a little scarcer, and a little shorter, but it was great to see the look of delight on the other older patient's faces as the boys rolled in acting like they owned the place.   

It was like my family had taken over the centre, and we loved it! 

[angela515]

I don't know if I could come sit with someone, spouse or not, if they were on dialysis and I was not... it was so boring for myself I would never want someone to sit there for all that time when they didn't need too.

[livecam]

At my unit family and friends visited many of the patients often.  My daughter would often come in with me if I had picked her up at school instead of her taking her usual ride home with our neighbors.  I would do that just to be able to spend some extra time with her.  She would grab an earphone and watch that day's episode of "Pokemon" while I dialyzed.  She was 6 at the time I started and did fine with being in the unit. 

Sometimes patients had visitors that tended to be on the loud and obnoxious side.  This was definitely not welcome.  Dialysis does come with some companion fun like blood pressure extremes, occasional head pain, and that "sucked out feeling" in the throat and elsewhere that can be really uncomfortable so at times like that a loud party nearby was not cool.

Other than that there was no problem having visitors around who were respectful of what was happening in the treatment area and the needs of the patients.

[karen547]

In my clinic, not many ppl get visitors. I myself don't either. I think when you get sick, you learn who your TRUE friends are and unfortunately lots of ppl have stopped talking to me since I started dialysis, mostly because I dont like going out like I used too.

[Black]

My family was here in August - I hadn't seen them since November `06 (before I started dialysis).  I was so excited to have them come to the unit and sit with me, so they could see what was keeping me away from home (they are in London, I am in NY - I used to go home every two months)  But it didn't happen.  They were freaked out - even my coming home post-dialysis normal bandaged freaked them out.  And I had a small arterial hematoma which made my niece cry.  I was sad that they didn't get to meet the techs that I've grown to care about, but the whole experience made me realise how much they love me.  The reality of dialysis crushed them.  Needless to say, one of the saddest days of my life was when I dropped them off at the airport.

I never thought that it could be difficult for our loved ones to see us on dialysis.  Now I look at the families that visit in the unit with a different perspective - They are the brave ones.  Husbands and wives, sons and daughters - one woman has a 9 year old who runs errands for the dialysis patients while his mom runs her 3 hours via permcath.  Some times he is in the waiting area watching the cartoon network.  He jokes around with the waiting patients and the access-a-ride drivers.  I look at him when I am leaving the unit, and I think "these are his childhood memories".  Pretty amazing, and humbling - survivors aren't just the patients - they are also the people who are on life's journey with you.

I cried when I read this.  It hit home so hard.  I am so sorry it was so difficult for your family.  Yes, they do love you.  And, yes, it is hard on all of us that love the patients and watch them suffer through the ordeal of dialysis in order to stay alive and stay with us.  No one but a patient and the ones who love them can understand what we go through.  My sister is the only one who seems to really get what we're going through and she is 500 miles away.

I have friends who complain when I don't answer the phone right away.  Because we're doing needles and my hands are sterile, I have to call back when I have time.  One friend complained, "I don't know when to call you anymore because you don't have a set time to do that."  She thinks we should "schedule" everything like she does her life!  She doesn't understand that I'm juggling a fulltime job at my home, my husband's dialysis, most of the housework, and my own health problems.  Maybe I should complain more? 

I can't imagine how tough it must be on those that have to go to the center to be with their loved ones because they do not have the convenience of home dialysis.  Yes, childhood memories in a center are not the best but it gives the child more time with the parent and may give them a greater sense of compassion and empathy with people who have to cope with chronic illness.  I'm sure there are times that the Mother seeing the child is a reminder of why she is doing dialysis and makes it seem worthwhile.

I know you were disappointed that they couldn't share that part of your life at the center, and it might have been better for them if they had.  The sadness you felt when they left, I can so identify with.  When my parents visited in June.  Mom could not watch Mike do dialysis; Dad sat with him for hours almost every night and they watched baseball together.  It was good for Mike to have the company.  It was so hard to say good-bye when they left for home in FL.  Mom is 81 and Dad is 89, so I know every good-bye may be our last.  This is the week I always go to FL to visit them and this year I can't go because of dialysis  I hope that maybe Mike and I can both go later on.

[paris]

When my lovely sister-in-law was going through her chemo treatments, her best friend planned chemo parties for her. Lisa's chemo went on for 3 years but Linda planned a different themed party for every session. Lisa's husband and children were always there and other family and friends came when they could.   There were costumes, decorations and food for everyone there.  Themes like: Shriek, 50's rock and roll, Gone with the Wind, and Country music.  At the country music one, she had a local radio dj come in. Newspaper reporters wrote lovely articles in the Atlanta paper about the love of true friends.  At first the doctors and nurses weren't sure about it, but quickly learned to love the parties and look forward to them.   Of course it helped that Linda could afford to do this, but the point is she took her time every few days to entertain and help her friend through a hard emotional and physical time.   Linda was as devestated as we were when Lisa left us.  But, what joy she gave Lisa in her darkest time.  I admire family members or friends who do this.  

[angela515]

I don't think of people who come visit as "brave"... everyone is different... some patients would rather not have family/friends with them at dialysis... I for one didn't. Why should I ask my loved ones to watch me go through something that I hate...I shouldn't and I didn't want to, and wouldn't do that to anyone I love or care about. I would never let my kids come sit with me in-center... I allowed them to come with my mom to pick me up though, so they would come in and sit in my chair while I was doing my standing BP and stuff, that's about all I allowed.

Like I say... everyone is different... some people like the company and need support of loved ones... and that's great if they get it, but they should never expect it... Just my 

[paris]

I think I admire the giving of time, whether sitting with someone or reading to a child.  Not many do things for others without wondering what is in it for them.  I hate for people to be with me when I am not well, but I do appreciate someone sweeping or cooking for me!!      It truly is a personal choice.   My husband can't handle being with anyone sick---so I know I will be sitting alone!!

[kitkatz]

I never thought about it  but my mother and sister have never offered to come sit with me while I am at dialysis. But then I guess I never invited them.  My daughters used to come sit with me. Having someone to talk to makes dialysis go faster it seems. I deal with this in my own terms a lot of the time.  It seems that ESRD and dialysis are lonely things to do even if you are in a room full of people.

[Stu]

I must just be different to most here. I wanted people to come visit me, not so much because I needed the company, but because I wanted to kow that they cared enough, or even gave some thought to the fact that I was stuck there bored stiff for four hours, and they might take some time out from their day to brighten mine.

I probably went about it the wrong way, by getting angry at people for not coming in to see me. This certainly backfired on me.

It's interesting kitkatz that you say you never invited your mother or sister. Do you think it's something that you should have to do? Did they ever ask you if they could visit you?

I had an interesting argument with my mother many years ago. To set the scene.....

My lovely wife had given birth to our first child about six weeks prior, and was suffering dreadfully with post-natal depression. She was hospitalised at a centre for PND sufferers about an hour from our home, with our baby in the hospital with her. I was working three days a week an hour in the opposite direction to the hospital she was staying at, and dialysing four times a week at a unit (fortunately) close to our home.

I was trying to work (if I didn't work, I didn't get paid), dialyse, and spend as much time at the hospital supporting my wife, and getting to know my new baby. On top of all this, I spent about thirty hours in the car for that two weeks going between all these things.

Needless to say, I was completely frazzled and exhausted during this time. My mother chose a day during this time to visit me at dialysis. After that visit, I didn't see her at the unit for over two years.

When I finally confronted her on the issue, she told me that I hadn't seemed happy to see her last time she visited, so she decided not to come back.

Surely a mother could understand the strain I was under at the time?

.......it would have been just so easy to ask if I wanted her to visit, but it was obviously just easier for her to make the assumption that I didn't want visitors. I think that suited her because she didn't really want to be there anyway.

 

I'm interested in why some of you don't want visitors at dialysis. Do you not want people to see you in your weakness or vulnerability? Do you think that it would be an unwarranted imposition on them?

[goofynina]

Wow, reading all you went through, i can certainly understand how strained you were.  Maybe your mom just didnt know the severity of your daily routines.  No sense in dwelling over the past, i would just forgive your mom and tell her how you feel,  if you would like her to come, invite her to come.   Sometimes my mom would come and some days i would enjoy it and others i just wanted to be left alone, of course any twinge i did mom was on it, whats wrong? do you want me to call someone? do you need anything?  but you know now that i think about it, she was just being a mother (as a matter of fact, she still does that to this day) and i hate to admit it but i sure do appreciate it.  If she steps over the limit then i will let her know but so far, she is just being mama.   I hope you dont hold any hard feelings towards your mom anymore Stu, i am sure she is hurting inside for all you are going through, just talk to her.  And i hope your wife and your baby are doing just fine as well.  We are here for you too, dont forget that ok.  With caring thoughts going your way..... Goofynina 

[Rerun]

I guess if they feel "sad" enough they will offer you a kidney!  That is what I always think when they won't let anyone watch me be stuck!  Hell yes let them watch and maybe they will be lead to get me off this machine. 

                                                                                                 

[George Jung]

I'm interested in why some of you don't want visitors at dialysis. Do you not want people to see you in your weakness or vulnerability? Do you think that it would be an unwarranted imposition on them?

I think part of me would like for people to see me during treatments (mostly for awareness), and then there is a part of me that doesn't.   Ignorance is bliss.  I take too much of this all on myself, I do not blaming anyone or anything, I do not feeling sorry for myself (maybe on occasion), I try to absorb as much as I can so that others don't.  So it's not so much that I don't want visitors...... maybe I'm uncomfortable imposing my hardships upon them?   That would be a good idea to have potential donors to make a visit to see me at the center.