What's become of me?

[texasstyle]

Not a particularly good day. Hubby had dialysis this morning & is sleeping all day/night again. I feel like I have to always tiptoe around here. He's the greatest guy and I'm not saying anything bad about him, but today I feel like "I" have no life. Like everything surrounds him. How tired he is, how far we can walk with out his legs swelling up, how long he can sit in one position because he'll cramp up, blah, blah, blah... Somedays I feel like I work in a nursing home. Yes, he appreciates me, that is not a problem but some days are just depressing. I want some fun again in life. I want us to laugh like crazy goofsballs. That hasn't happened in years. Today is like an Autumn day. Maybe it's the change of seasons. just feeling a wee bit off today. Thanks for listening.

[Hanify]

I really feel for you.  I'm always worried my husband will feel the same way - that it's all about be.  Can you make some time to get out with some girlfriends or something?  And ask them to ban the subject of dialysis?  You need some time for yourself I think.  Keep talking to your husband about how you feel - he deserves to know, in case there are things he can do to help.  He may just not realise.  It's so hard.  Thinking of you.

[okarol]

My husband has been disabled at home for 8 years. I remember feeling like you do, the first couple of years. He and I used to do a lot together, and he was very active with tennis, windsurfing, beach volley ball, down hill skiing (which is how he injured his back, his ski hit a rock buried in the snow and it compressed his spine.)
I realized that no one is going to come rescue me, or make me happy, or give me joy. It's up to me to choose how to have a good time. Yes, I would prefer to have him back to his old self, but it's not going to happen. Life is changed for us, but it doesn't have to be the end. I try to go to movies, or go shoot photos, or take short trips with friends. It's hard because most friends have a husband or children, and don't go anywhere by themselves, but it happens occasionally.  We don't have many friends over anymore, because they were all couples, but sometimes things work out.
As far as doing things with your hubby, don't feel like you have to sit there while he's resting. Go do something. You can come home later, get some take-out at the market, rent a movie, make some s'mores in the microwave and spend a special night with him at home - but don't do that every day. I am sure he doesn't want you to feel trapped.
Find something you love to do and explore it. You will be a much more interesting partner too, because you won't just be bogged down with the duties of caregiver, with nothing more to give. You need an escape and you deserve to make everyday as good as it can be.
  Take care of yourself.

[lola]

My escape from EVERYTHING is a trip to have a pedicure. Otto at times will tell me to GO as he can tell when my stress level is up. Sometimes even a trip to Target with NO kids just walking up ever isle in a daze with a coffee can de-stress me. 

[Yvonne]

I think nearly all us careres feel the same. Sometimes I do not know what we would do without this site to do our ranting. It makes you feel so much better when you know your not the only one feeling like we do.

[greco02]

 

[marti824]

not to take anything away from the car givers, because we would be lost without you all, but, believe it or not, we, as patients, feel the same way.  At least, i do.  What has become of me.  I used to work, and actually contribute some money to the household.  I used to go out with friends, to dinners to the movies, shopping, I hardly do anymore, I can't keep up. I have all I can do to go grocery shopping, so I've started using Peapod.com, they deliver.  I miss going to pick out my own produce and my own meat.  Could my husband do the shopping, sure, but he works like a dog, and I hate to ask him when he finally has a day off.  I go to bed at nine or nine-thirty because i have to get up at four-thirty to go to dialysis.  I constantly have a hamper full of dirty clothes because I can only manage to do one or two loads before I'm exhausted. Same with dishes.  I can't remember the last time I actually had fun, it's just too much work.  even going on vacation is a pain in the butt because you have to arrange your treatments before anything else.  But we do what we have to, even though we have changed.  I keep trying to tell myself that it is better than the alternative, but sometimes, I'm not so sure.  So, I keep coming back to this site, to know that I am not alone, and neither are you.  give yourself a break, and go out somewhere, I'm sure your husband will not mind you doing that, and keep coming here to rant.

[Yvonne]

I wish I could get John to come to this site and air his feelings like you have marti824 as I know he must feel really bad about his illness and the fact that it is mine as well.

[billybags]

texasstyle, I know exactly how you feel, I feel that way too. My whole life seems to have been taken over by this fu**ing crap. Yes, like you I am angry, I am married to a wonderful guy who has given me and our family years of love and laughter. This seems such an unfitting autume  of our lives when we should be enjoying our retirement. Then I look at all the young people that are just starting this crap journey and think to my self at least we have had 40 years of the good life. My life like yours and lots more carers is centred around hospitals, appointments, dialysis. My husband also goes to bed after dialysis and he is in bed early at night.I do feel lonely, my family perhapes dont understand what we are going through, they give us a ring or pop around once a week. Yes I do want more out of life, is this so wrong, I want to, I dont know what I want, the old life back. The way it was. This can not be so we just have to get on with it. Smile when you feel like crying, do things when you are tired ,take the little things in life that give you pleasure. So texasstle you are not on your own, we are all out there thinking these things.Another thing, while we are thinking of our sellves, what must our husbands be thinking, that they are use less, havent got the energy to take the garbage out or the dog for a walk.They must also long for a normal life. I send you hugs and kisses, lots of love.

[RichardMEL]

I totally agree that you need to find time for YOU and treat yourself. That doesn't mean you don't care about your husband or you want to run away from him, but you need a chance to recharge your own batteries (emotional and physical)... like could you go and do stuff for you while he does dialysis or sleeps when he comes home from it? I mean he's not really going to need you there if he comes home and sleeps (I know some days I get home and sleep for a few hours). Maybe you could go to the mall and shop, or out with some friends for coffee or something like that.

As an extended idea maybe a girl's night out or something might also be an idea. Hopefully hubby wouldn't resent you for that. I think it's important to get a break for you. Hubby can't unfortunately because he has to endure it, but as his carer I think YOU need to look after you or else you can't look after him much.

Just my two cents.

[Bub]

Kidney failure takes over your life, and after reading your post I understand that it takes over the life of those you love and take care of you also.  There are days when I have to do something to show myself that ESRD limits me but does not define me.  On Saturdays I work four or five hours in the morning and am off to dialysis in the afternoon.  Last Saturday I refused to go to work or dialysis.  I know it is a bad idea but I simply had to take a day off for myself.  I relaxed and did things  I enjoyed.  I had a minor rebellion.  I am fine now and back on routine!

[cherpep]

I am so happy when my husband takes time for himself.  He gives so much in taking care of me and my family, I am thrilled when he makes time for himself.  Sometimes he'll go to the gym, another time he'll make a 'quick' run to the store (and is gone for a few hours), or even steal a nap in the hammock.  Honestly, I feel better myself when he takes these moments.  I feel less guilty.  Your husband may feel the same way.   You may actually help him more by taking some time for yourself.  Best wishes to you - we patients are extremely grateful to have loving, caring caregivers like yourself, and we want you to take care of yourself too.

[rocker]

Trashy novels.

Cannot recommend them highly enough.

For me, it's science fiction.  Yes, he may be on the machine, and complaining about this or that, but I can pick up my book and in 30 seconds I'm on a planet halfway across the galaxy worrying about whether the hyperdrive in my starship will function properly. 

Hours of fun for a few bucks.

Reading is a good way to make time for yourself.  It's quiet and can be done almost anywhere.  It takes you out of yourself for a while, and gives perspective.

I also have other home hobbies I pursue when I can, like sewing and such.  But nothing is so versatile and liberating as a really good (or bad!) book.

[greco02]

I posted yesterday but have no idea why it didn't show up.    My new psychologist gave me homework. Before I see her again I am to do something fun just for me.  So, I am going to take a day off work and hit the resale shops.  It's all about the hunt.  I can't wait.  I have some very expensive suits I bought for next to nothing at a nice resale shop.  Actually, the dry cleaning cost more than the suit.   Obviously everyones idea of fun is very very different.

[twirl]

What's become of me?
I am the one with PKD and I ask myself the same question everyday.

[mcmkids]

I am with you! My life has done a complete 360 since last year. Sometimes it is hard to stay supportive, because we as spouses are also going through a greiving process. I REALLY miss how my life was. My husband was able to do run circles around me. Now everytime he does something, he needs to rest or take a nap before going on to something else. Some days, he just stays in bed...

We made a decision long ago to start our family early so that we could enjoy life AFTER raising kids. It is not looking like that will be as easy as we thought. I'll tell you something, I never thought that I would be taking care of my husband at 44. I guess what keeps me sane is staying busy with my kids and also knowing that his fatigue is because his kidneys are not functioning properly. It isn't his fault, it is just the hand we were dealt.

I don't ever complain to anyone except the wonderful people on this site because only YOU really know and understand what I am living with. I am glad that we can be there for each other. I just wish that life wasn't so hectic, I would spend a lot more time with you on this site!!!

Stay strong and remember, it is OK to feel the way you do. You are only human!!! 

[texasstyle]

I'm still so amazed with all the great feedback I get from everyone here. I'm starting to really feel like I'm fitting in.I Know one other person who had a family member on dialysis, there weren't many to talk too. First off, I ALWAYS feel & think how my husband, the dialysis patient, must feel. He sometimes expresses his feelings of lack of worth, you might say. At 59 he says he feels like such an old man. He has great worth and there are still many great things he can do. Just differently now. I try to reinforce that. I feel for all of you who have kidney problems as well. Myself I was diagnosed with Hep C and recently completed treatment. I have an understanding of the way it feels to live with a chronic illness. I am happy to report though my treatment was successful. The more I read here the more I see that even as we caretakers may need to gripe once in a while, we're still taking care! I'm learning so much about myself and life through all experiences that come my way. Life is pretty darn precious. I do find time to do many things for myself though I do not work. On occasion, I do spend an overnight at my best girlfriends house where she has a pool. Her & my daughter will do some midnight swimming and it's a lot of fun. On occasion I do go out to enjoy some music. I used to write a lot but seem to have writer's block lately. We are also looking into getting a King Charles Cavalier puppy soon. Good things happening so I take them when I can for I never know what the next day may hold. Tomorrow is a new day and like I said, life is precious.

[marti824]

Amen!

[texasstyle]

I reread all these replies and it takes a small bit of weight off knowing that people on dialysis DO do a lot of resting, or sleeping for the day. Sometimes even hard to get the dog out for a walk.I was really feeling like it was only my husband (though I do know dialysis makes you tired) and that maybe he should've been putting forth a little more effort to be more active. I'm learning much more about what the caretaker goes through, and just as importantly, was the patient goes through. In the last couple weeks here I am learning that I have to work on "myself". If I didn't keep myself involved in activities and have my own life, I'd probably be such a BORE lol. We don't want that.Tonight I will lie my head on the pillow knowing tomorrow is a new day. A new breath of life will awaken me and you too.

[Hanify]

If I'm going out (like I am tonight) I will spend most of the day in bed to make up for it.  I did visit my sister for lunch, but I went to bed last night at 8.30, and didn't get up today until midday.  I then had a sleep in the afternoon!  Seems extreme I know, but otherwise I find I just get more and more tired over a few days and conk out eventually.  Not everyone is like this, but I know I am.  I would love it to be otherwise, but have to listen to my body.

[billybags]

Hi Texesstyle, to-day we had a good day, (day after diaylsis ) It was lovely. Before all this crap with Hemo my husband and I were volunteer gardeners at an old peoples complex and with him being so tired I was doing it on my own, I missed him being there with me.To-day he came and did things, weeding exct nothing too tiring. It was wonderful just to see him doing some thing normal again and ok he will proberbley be creamcrackered come tea time.It is the little things that count in life. It made my day. Take care.

[aharris2]

Today was a dialysis day. My brother is on first shift. After dialysis he is quite hungry so we stopped at Kentucky Fried Chicken on the way home. He ate a 4 piece meal. He went to sleep as soon as we got home (about 1pm). I napped with my cat then got up to do some things around the house. He will get up, have some dinner, surf a little then back to sleep. I will do some wound care and then go to bed too. My beloved pet will be waiting, purring his brains out.

Tomorrow we will enjoy. There will be an early breakfast at Panera - souffles for him, a bagel for me. Then we will go to a pre-noon movie for $5 each. After that, we'll come back home and my brother will most likely nap until evening. We have free tickets to Side Splitters (the local comedy club), hopefully he will be rested enough to go out and enjoy it. If not, he will sleep in and I will  happily relax with the cat and the remote.

It is Labor Day weekend. We will probably repeat the breakfast and a movie thing on Monday. But, Monday PM is dialysis. After that, it is dinner and then to bed. Rolando will sleep in in the morning on Tuesday, awakening for lunch and then to sleep again. Work for me. I expect a long day. We may go to the movies in the evening - Tuesdays is $5.00 for senior citizens. Wednesday is an all-day event, so we have to be careful not to overdo it this weekend and Mon/Tues so that he can enjoy the event.

texasstyle, we just go with the flow. We try not to think about what isn't anymore and look at what is and how we can do the best with what we have. (Some of what we have been able to do has been pretty amazing!)

Naps are a part of it. If my brother doesn't get the sleep he needs, he will become increasingly unwell. When we go on vacation, we plan vacation days, dialysis days, and recovery (napping - sometimes in the car as we travel from one spot to another) days.

What do I do for myself?
1. I go to work. It turns out that that is for my brother as well. I can't wait to get back home to him.
2. It seems that I love to go food shopping. Even if it is just for the classic "bread and milk", I enjoy just walking the aisles looking at good things to eat.
3. I share with Harry (my cat)... be it my pillow, a little chicken or ham off of my plate, or my hands petting him. It's so easy to get him purring and so pleasant to be around.

[del]

I think my husband is one of the lucky people who does dialysis.  He has been on dialysis for 12 years - PD for 3, incenter hemo 6 and now home nocturnal hemo for 3 years. He usually has lots more energy than me!!  He rarely has a nap through the day - not even when he was in center. He cuts firewood, does carpentry work, goes boating - everything that he used to do before dialysis.  I do all the things I want to do as well - we spend a lot of time together though.  We always did even before dialysis.  He usually gets up just after I leave for school in the morning and it is usually 11 at night before we go to bed.  Only big change in our life is him actually having to hook up to a dialysis machine .  Everything else is pretty much the same as always.  In my case I really don't think of myself as a caregiver but more as a partner.  I tell him he is quite capable of taking care of himself!!  LOL!!

[looneytunes]

Del, you and your spouse are truly blessed.  It is encouraging to read a post in which the patient is able to do what they always did.  My husband has good days and some not so good.  At times, it seems more bad than good but then at other times it's the opposite.  We celebrate the good days when he is able to get up and out.  The bad days we try to ignore and hope for a better one tomorrow. 

[nursewratchet]

Do you go to dialysis with your husband?  It sounds terrible, but I ENCOURAGE the spouses to stay home during the treatement.  They sometimes think we are trying to hide something in the clinic or whatever.  It's to get the spouse away from dialyisis for a short time.  It is sometimes your only break.  You need to take that time, or whatever time you can get for yourself.  If you cna't take care of yourself, you can't take care of your husband.  "Sharpen your saw"...