I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: LostWife on January 03, 2011, 06:25:57 AM
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So..hi. I'm trying to figure out not just how to get through the day but minute by minute. I feel lost, alone, and overwhelmingly sad. Here's what has happened to my husband (and well, me, too) in the last month:
T-giving Day: hospital due to flu
Week after: hospital due to pneumonia
Week off! hooray
Week after that: hospital again - finally diagnosed as kidney infection
Week after that: different hospital, same issue - big strong powerful antibiotics...
Week after that: urology (the IDIOTS) put in a stent between the kidney and the bladder. He was about 90% recovered when they did that. This is followed by a week of sheer utter living hell...and now, he's back in the hospital again.
We had no Christmas, no New Years...no fun. Just sorrow. Luckily my family was in town so I went to the hospital everyday since I had caregivers for the baby. Now, they are all gone.
He has the constant urge to pee, and his bladder is empty. He went to the ER last night to have the bladder scanned to see if it was full or not, it wasn't but they decided he needed to stay b/c his kidney didn't look good on the ultrasound. So, is it more infected again? Is it just the same issue? Does it need to be removed?? I feel just sick. I don't know what to do, how to function, how to pick up the pieces from this. Please give me some encouraging words.
This is not how I wanted to start the new year.
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I truly wish I had some words of wisdom here that would help. You have managed so much is such a short time, anyone would feel overwhelmed. All I can offer is our own coping mechanism, when challenges come our way. We don't try to solve all the problems at once, take one step at a time, and try to focus on what you can do to make things better. The things we cannot change will be there. The things we can change for the better do make a difference.
You will make it through, and if there is any support you can call on, or at least let them know, so when you really need them, they might be able to help you. No one likes to burden others when they are in need, but sometimes, it helps to let people know what is happening. Best wishes...
Mark :canadaflag;
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No advice or help here, butyou certainly have my sympathies. Just try to remember, you are not Superwoman, and as I always say, one day at a time, that is all I can do. With this kidney disease, you often get answers that you dont really want to hear from your DH Dr. Keep your chin up and come here when ever you need to vent. We are here for you!!! :grouphug;
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You are in a Hard Place right now. Please come this Site often. There are People on here, who have that been to that Hard Place often and People who live it every Day. If We can't Help, We will give Encouragement. There are Tons of People on this Site, who are Good and Caring People and who have a lot of Advice to offer. Try to take some time for Yourself, it's so Important, when You are taking care of Someone Else. You will make it Through. Humans, are such Incredible Works of God. We have Strength and Fortitude, we don't even know, We have, until We have to Draw on it. Take Care Hon.
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:grouphug; I hope things get better.
Jenna was given ditropan to reduce the bladder spasms. Have they tried that?
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Im so sorry for 'where you are'. It's unbearable and i dread my turn. (again) I have been there and Thanks be to God, we have been on a year long somewhat up, but this is after a sure im loosing him time for months. It breaks my heart for you, and i can just say to get on your knees and pray for strength... Bless you, and keep talking here. Sometimes it's the only place you know will understand... Im sorry, i wish you strength and healing for hubby.. :pray;
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Awww LW, I'm so sorry this is happening for you all. When hubby and I recently went through a rough couple of months, my motto (mantra) was "the only way from down is up". Spending so much time at the hospital is tough on the best of us. And you with a baby....Please take a few minutes every day to do something for yourself even if it's just a short walk or a few pages in a book or magazine. It will help keep your mind clear. I'm sending you my biggest cyber hug.... :cuddle;
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I do hope things get better and more manageable soon.
Kind regards from Kristina. :grouphug;
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Thanks everyone. I just keep feeling so much regret for getting that stent put in! I just keep regretting and feeling sad about it, and really, there's nothing we can do about it now. He was 90% better at that point! argh. Misery.
I'm back at work now too so that means less time to visit the hospital. I feel terrible about being here and not there, but I also have to think about our future and making sure there's a roof over our heads.
Looks like the stent may have caused the kidney to flare back up. I really hope they don't have to remove it but at this point who knows.
I just want my life back. I feel so SAD. Last night I was awake in bed but not tossing or turning. I was just sad.
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:grouphug;
This storm you are going though is rough.
I feel for you and hope your sadness aleves.
I took to journal writing to help sort my thoughts.
Hope conquers dispair and misery loves company...
Keep sharing
~debs
I
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I reach out to you and send you an enormous metaphorical hug! You read like the most amazing, brave person, and I am certain your partner is truly enriched by the depth of your care and compassion.
:pray;I would not presume to iffier advice, suffice to say that there is some consolation in this website, as here there is a huge community of people who truly do care, and are there for you, one way or the other.
I wish you strength and courage, and I hope and pray that your situation resolves for the better.
My thoughts are with you from very far away geographically but very close otherwise!
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I can really share your pain.
Our holidays here were also nonexistant pretty much. No seeing my family,mom kids grandson and sisters on christmas day at the annual dinner. we went a week later thinking things would be better. No he had a killer migraine all day. I tried to enjoy the company of my kids mom etc, but was more focused on Todd feeling bad. We left and i felt bad cause i had told the girls we would not have to rush off since i had the night off work.
I am trying not to feel guilty but I have to go on with my work, my life. I help him all I can. But I am not a superwoman. I am 46 years old. My back hurts from being a cna all night long. I get some sleep, but feel like i have to get on the housework before he tries to do too much. If i keep it done it wont be bugging him.
Maybe they need to up my prozac or something LOL.
My prayers are with you.
take care,Dianne
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Thank you all for your kind words and compassion. I really appreciate it. I am so not good at this. I really am not. I am so impatient and so frustrated and unkind sometimes. I wish I could just be a kind caregiver all of the time. I'm not good at sick.
For the first time in my life I am considering asking a doctor for some medication to help with this sadness. I am normally a VERY upbeat person and have the kind of personality that allows me to buoy myself up. That is not happening now. I put an appt on my calendar last month to get a physical appt this month. I keep promising myself that my son will have one healthy parent, but the way I am avoiding the doctor is not really living up to that promise. I haven't gone b/c we go to my husband's doctors/hospitals/clinics so much that I neglect my care out of not wanting to see the inside of a dr office!
My husband is home from the hospital and up in bed. I really hope his body can fight off more infection -- and that he doesn't need to have that kidney removed.
Hugs to all - patients, and caregivers and thanks again.
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I just want my life back. I feel so SAD. Last night I was awake in bed but not tossing or turning. I was just sad.
Are you me?
I am so not good at this. I really am not. I am so impatient and so frustrated and unkind sometimes ... I'm not good at sick.
Are you sure you're not me?
This will be of little consolation, but I have been there. I have the t-shirt, the video (oh yes, I'm going retro!) and a cupboard full of whatever else life throws at me. And, as stupid as it sounds, it DOES get easier. Or, you become more adept at handling the crap that this kidney malarkey conjures up. Or, you just get so used to it that nothing comes as a surprise any more (simply because you know that something bad is going to happen at some point and you're always prepared for that, even though your tummy is in knots ALL THE TIME and the frustration and anger eat away at you and make you feel mean so that you learn how to bite your tongue and ignore the things that once would have caused huge friction but that then just makes you feel overwhelmed and you know nobody who is going to truly understand, so you come on here and reach out to those who DO get you ... *breathes*)
Sometimes I daren't look at my phone in case Blokey has sent me a text saying he's poorly because I used to get so many at one point. I now don't respond to his moany texts about how awful they treat him at dialysis because I've learnt that it's just his way of offloading because he has no other outlet. I rarely nag him about food or fluid; he's a Big Boy and I'm not his mother (nor am I his caregiver, although I do EVERYTHING so that he doesn't have to.)
Although this will probably never completely settle down, you will get through this part and there is sunlight just peeking through the grey clouds (you just can't see it yet.)
Many *huggles* for you and hubby and baby-boy. Feel free to PM me at any time, although be warned that I am totally rubbish at offering sensible advice ...
;D
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we all find strength in times of adversity.
good luck with everything :thumbup;
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You're not lost, you have us to help you through. There's no text book way to get through these things so we share our experience in hope that helps. Being a caregiver is sooooooo stressful on you too! All those hosp. visits, stressfull on you. Don't think for a minute we don't understand. We try our best to take advantage of the good times in between but, geez sometimes you feel like "when exactly would they be?" lol. I can imagine, no, I know you are feeling overwhelmed with it all. Take a deep breath and let it out slowly. You can vent here all you want. I've done it so many times. It feels so good just to get it out. Being a caregiver is very important but very hard. Sometimes we feel overlooked, passed over, taken for granite. But we arent trust me on that. We worry, we cry, we worry once again. We check to see that our loved one's are breathing as we walk by, we are constantly thinking of them first and putting ourselves second. Even in all you're going through you must take a little time for yourself. Even if it's just to get some space for 5 minutes. I've learned how to do that from coming here and finding out it is a must. Some mild anti-depression/anxiety medications may help you. Lexapro is a popular one, takes a couple weeks to get in your sysyem but helps to take the edge off. That decesion would be with your Dr.You can not put your own health aside. Do your best to see your own doctors. Hang in there. You just have to go one day at a time. Carolyn
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Thanks all. I am definitely going to look into a light anti-anxiety med, if only so my child doesn't see me get so upset so often. If that works I will be grateful.
I really appreciate all of your kind words during such a hard time. My husband has been home since last um..Wednesday? I can't recall. How sad is that? Anyhow, they gave him some detrol for the bladder but it didn't do any good, so they gave him something with opium in it! Opium. I can't believe it. He's been knocked out a LOT over the past few days. He seems fine but his energy level is pretty low. He is supposed to go back to work tomorrow, try for a half day.
So, I did reach out and ask for help. I got in return: some dinners delivered, and today an afternoon of babysitting. Babysitter also brought cookies and low-phosphorus chili that she took the time to make! :2thumbsup; How nice was that?! We were going to go to a movie but didn't see anything on that we wanted to watch, so we went to replace the shoes he lost at the hospital, and then went to our favorite cafe and just hung out a bit. Even though he was tired it was fun, lots of fun. Relaxing even, and no toddler climbing the walls.
thanks again. I am so glad I came here to post.
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Good you got some help! :cheer:
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How nice you got dinners delivered (and cookies too boot? lol). Sometimes those little mean SO much. Most people have no idea. Just knowing and having the feeling that people do care means a great deal to us. Opiates are narcotics and will make you sleepy. If he goes to work tomorrow while on his meds he may want to be very careful ESPECIALLY if he works around heavy equipment or with any other things that may be dangerous if you're a little "out of it" from the meds. In my opinon with your concerns of your child seeing you upset, if it continues I would try to be honest in a "toddler kinda way". I think if a child doesn't know why something is happening/going on it is more upsetting than knowing why. "Daddy doesn't feel well and mommy is upset that's why you see me cry". Something that simple may be the answer. Kids are pretty resilent too.How thre heck did he lose his shoes anyway? lol.. take care
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LW...so glad you got out for a little fun. And, the HELP...WOW! :grouphug;
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hey LW glad you got some "down" time, hang in there!!!! Also FYI the shower is a GREAT place for melt downs, I have 3 kids and if my eyes are all red I can say I got soap in them!!!! I wish I could tell you things will get better, but you just learn how to roll with it all..... :grouphug; :grouphug;
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Awww, that's brilliant that you got just the support you needed. What wonderful people you know!
;D