Yes, you ARE a caregiver

[texasstyle]

Good morning everyone. Coffee is brewing in the kitchen, you're welcome over for a cup, anytime!    On ocaasasion I've noticed where our loved one (the one on dialysis), has a very control of thier situation and are able to keep things under control themselves through diet, Dr. visits etc....  making us maybe "a little less needed" if that is the right word I'm looking for due to their good health habits. If you are especially a spouse then you ARE a caregiver. Care does not always come in the form of cooking the right meals, taking to the dialysis center, and such. Caregivers, we are there EMOTIONALLY and that holds a lot of weight.  Everyone has such a different situation they deal with but I can bet, we all feel the same way on the inside. Our concerns are probably almost the same, and the things we think about daily. Even as a family member, you are giving care as well. Even before I was involed in my husbands kidney faiure, I saw some expereinces where I was amazed athow much a caregiver did for someone. I did not realize the term "caregiver" then, but I knew it was something special. A sacrafice to different degrees.

[boswife]

Beautiful    So funny how we must all feel on the "inside" as just today, i was looking at Bo (hubby) and i though....... What an emotional 'care' and responsibility i carry in my heart ALL the time.. D or No D, the emotional is always there.  Do i love him more because he's ill, nope, or less, nope.... but the 'carring' part  *is* more involved...  Sending love and **carring** to you  TS  and all our fellow "CARRERS" 

[billybags]

Tex, that was lovely The other day I said to my husband "I feel so stressed" you know how some days it gets to you,  he said "What have you got to be stressed about" As you say we carry it inside all the time.

[Poppylicious]

I think about this a lot.  I mean, compared to many of you lovely people, I view my 'caregiving' experience as minimal and I don't ever call myself a 'caregiver', because I really don't see myself as one (although I did nod my head in agreement with what you said, tex).  I suppose that my definition of 'caregiver' would be someone who spends 24/7 caring for someone, particularly on a deeper, more intimate level (helping someone go to the loo, or bathe, etc.) and as all I do is nag about food/meds and collect meds, then I really don't feel that I fit the (my) definition. 

However, maybe the emotional support is more a factor than I supposed. 

Does that mean I have to stop nagging him?!

 

(Bless ya, tex.)

[del]

If emotional support is being a caregiver I'm one 24/7!!  He need s a LOT of emotional support.  I think most dialyiss patients need emotional support.  He always says he wouldn't make it without me.  This past year has been really bad. His mom lived with us for 27 years and a little over a year ago we had to put her in a nursing home because of dementia - she doesn't even know she lived with us.  Hubby was very close to his mom and he has found it very difficult. When we go visit her he has to talk about thinks in the past because she has no recollection of present things. She doesn't even remember that people have died - she keeps looking for Walt's father and her mother and father.  Less than 5 minutes after we leave she doesn't even know we were there.  She even asked hubby one night where his wife Marilyn was.  He never ever had a girlfriend named Marilyn and there is no Marilyn in the family!! 
Over the years I have had to have LOTS of pep talks.  I guess I am a caregiver!  Hubby doesn't cook either so he would starve to death without me!!  LOL

[looneytunes]

I see caregiving as more than just taking care of someone's physical needs.  The emotional side of it is HUGE.  And can be more draining than the physical side.  I find it that way, anyway.   There are days that I think I need a caregiver myself!    

Bless all of you (and me too please  ) for being willing to do whatever you do for your loved one.  Whether it's a little or a lot, it is giving of yourself.  Days when things get hectic or you are just bone weary, it's hard to make yourself do "just one more thing" but you do it.  And, though sometimes it doesn't feel like it's appreciated, overall, it really is.   

[Kitty Cat]

Texasstyle, thank you so much for that. I hadn't been thinking of myself that way because his needs have always bypassed mine, especially now.

I have started learning to cook as hubby was a chef years ago and always took control of the kitchen and I never fought it. So....my cooking skills are weak at best. I can bake homemade breads (by hand) homemade cheesecake, anything that goes into the oven, but I can't make the poor guy eat stouffers all the time!!!!     So I'm trying and when I mess up, I tell him it's his tastebuds (the chemo makes him taste things funny). In the end I tell him the truth, he shakes his head at me but still says it was good. That's a good sport. Practice makes perfect, but honestly, I'm not sure there's enough time left in the universe for this!!!   

[texasstyle]

Oh my goodness Kitty, ..'his needs have always bypassed mine."That is a caregiver's statement FOR SURE!  I like this special section here for caregivers because we too are just as important, AND we have our own special needs. So often we vent here our feelings about how our lovedones needs come first, and we feel like we are put on the back burner. As a caregiver you need time to  BE YOU. If you enjoy being in the kitchen with all your creativity, that's actually some great time for yourself in a sense. It's something you can invest some time into and, by the sounds of it (cheesecake? Yummm. Homemade bread? Yuummmm...) it sounds like you're doing a great job in there and having fun at it! You don't always need to leave the house for it. Please keep in mind though that when things get a little too stressful (which happens) it's OK to give yourself a break. Step outside if you need to and take a deep breath. YOU ARE IMPORTANT TOO!

[MooseMom]

I don't mean to butt in here, but even though I am the one who is sick, I'm still the one who does the cooking and the cleaning and the gardening and the shopping, all the while trying to shield my husband from my fear.  I've never asked him to come to any of my appointments the whole time we've been married.  I am always very mindful of how hard he works, and I try to provide emotional support for him.  I intend to do my dialysis at home but do not intend to ask him to assist in any way, but I will continue doing the cooking and the cleaning and the gardening and the shopping.

Even though my mother lived on the other side of the country, I'd often go down there and would look after her as well as I could, taking her to dialysis and doing household chores for her while she was at the clinic.  I'd get her to come up here and stay as long as her clinic would allow, and I'd take her to dialysis and do everything so that she could just relax, all the while still looking after my husband.

Any wife is a caregiver, and what's really tough is when the wife is the one with failing kidneys but still has to be the "caregiver".  Keeping track of all my meds and appts is a full time job, and I'm not even on D yet.  I don't know what's going to happen at that point.   I don't ever get a break.

(Sorry, just venting.)

[texasstyle]

Moosemom, I think most importantly we're giving support and encouragement to the cargivers. It is not to make a person on dialysis feel as if they do nothing but let the caregiver do everything by any means. I'll tell you a story. I can Relate to where your coming from. Almost 3 years ago I did a year long treatment for Hep C. It was difficult and I was ill the entire time. My reds & whites plunged and I was put on booster injections. I felt a "flu" the whole time symptom. I was nausea's but never "got sick". Ginger root worked at first butthen I needed stronger nausea meds. my muscles screamed in pain for oxygen. My reds so low, not enough oxygen getting to my muscles. carrying a grocery bag was painful. I can only describe it to like when one of those power weight lifters just take the intense pain any more and they drop their weight. I lost weight, my skin was crappy grey. My mouth had sores in them for the meds. My eye sight was even slightly blurry from the anemia from having the low reds. The treatment was a "type" of chemo". The flu feeling was the worst. It didn't' go away for a year. There was a day or 2 of each week where I was good enough to be productive beyond what I was the rest of the week. Each day, I had an hour or two of felling "sorta OK". Now.... during all this, I took care of my husband who is on dialysis and non compliant for the most part. We moved which was a hell job. They day we moved in he was on the floor in congestive heart failure. 2 days after we moved in he stepped on a nail and got staph infection. I ate away his foot tremendously. he would not seek treatment until his unit was called by some one (me) and told to look at his his purple, infected foot please.  They sent him immediately to the foot doc and was taken over to Er admittance. He was almost nearthe point of septic shock. They did 2 surgieries to try and save his foot from being amputated. he came home with a nurse to dress the wound each day. he was put on a vac-pump and in a wheel chair. Told to stay off it, but he didn't. I had t follow him around ridiculously all the time feeling like hell has taken hold of me. I was so angry at him. For 3 months I pushed his wheel chair while I screamed in pain. When I had to stop because I felt sick. 5 months into my 11 month treatment my Gastro moved about half hour away. Not that big a deal because it was only a monthly visit at the time. he yelled at me that i had to find a new Dr. Once his sister took me took the Dr apt. "How dare I make her take me". I'm telling ya, it was an ugly time. Vent all you want Moosemom because I sure just did right? lol. What my basic point was (a long time ago lol), was that I get where you're coming from and you're not alone.Don't you just want to scream sometimes?  You do what you have even with your own challenges of a dialysis patient and to me, is incredibly admirable! Being a caregiver, and Yes, youare a caregiver, can sometimes be emotionaly draining. Even with all that the good times make it owrth it's while and keep us going.

[MooseMom]

Oh, I certainly didn't mean to imply that you all think we kidney people just loll about while you do all the caring!   But ts, you do bring up a good point, and that is caring for a spouse who is non-compliant.  I do believe that one BIG way in which I care for my husband is by taking care of myself.  I really fear being a burden to him, and that fear compels me to do the diet, take the pills and make the appointments.  To be non-compliant is selfish (I don't mean to be harsh, but it's still true) because that just assumes that your spouse/partner is going to come and pick up the pieces, and that's not fair.

My husband does not really take care of himself as he should, and I do worry very much that he will have a heart attack or something while I'm fighting my own renal battles, and it sometimes makes me very angry that he doesn't look after his health like I do mine.  He can't assume that I'm going to be there to pick up the pieces.

TS, it sounds like you really went through the wars there!

[texasstyle]

That brings up another good point of discussion, the feelings of being burdesome.  I've wondered in general just how that will be when I'm  old(er) 46 now. I think that in most cases the person that feels like a burden, really isn't to the other person. Sounds to me that  you have a been a do it yourself kinda person to begin with. A go-getter. My spouse doesn't really think oe expect me o pick up the pieces, he's just dumb. HAAAAAAAAAAAAA.. Not really lol. He just doesn't know when no means no. I truly don't think he understands what has happened to his body in a medical way. He has been planting a garden and it's beautiful. But he pushes his limits everyday and it's scary to watch. Like you said, the heart attack thing. He made a statement thathe is getting stronger meaning his heart. He has CH, had a Tamponade and now a pericardial window. I told him, his heart will not get stronger and that he's risking heart attack in the high heat and digging like crazy. We'relucky here that we understand more so than a lot of people about the physcial aspects of renal failure and other situations. I kinda expect everyone in life to know the same but it's not like that. Not wanting to be a burden sounds to me like the actions of a caring person who is ALWAYS thinking of others first. If at sometime in your life you need to, please don't ever be afraid to reach out for help. This is crazy life lol. Now off to get my coffee cups ready as Richard MEL is bringing a fancy machine to brew it in this morning. He even remembered my flavoring is raspberry! lol  Ihave lots of coffee mugs. You're more than welcome to join!

[Poppylicious]

Any wife is a caregiver, and what's really tough is when the wife is the one with failing kidneys but still has to be the "caregiver".  Keeping track of all my meds and appts is a full time job, and I'm not even on D yet.  I don't know what's going to happen at that point.   I don't ever get a break.

Any husband is a caregiver and what's really tough is when the husband is the one with the failed kidneys but still has to be the "breadwinner".  Keeping track of all my meds and appts is a full time job, plus I actually have a full time job and my wife is a lazy b!tch who isn't currently working.  I get home from an 8 hour day at the office, followed by a 5 hour stint on dialysis, to find that my wife has done nothing but sit on her arse all day grumbling to folk online about what a burden I am.  And what if I'm made redundant?  Who's going to employ ME?  I won't ever get a break.

^ And that's why I don't consider myself a caregiver.

(With grateful thanks to MM for letting me rewrite her statement with the things I imagine Blokey thinks!)

 

[texasstyle]

oh Poppy, it that what really THINK you're husband's thiking about YOU? Did I read that correctly. I can't imagine that he feels that way. I know you have true concerns because first off, you come here and you're not always complaing lol. (it's ok to do that sometimes still)  Has your Blokey ever said anything to make you feel this way? I'll bet you do more caregiving than you realize but just don't know it. Caregiving doesn't mean busting butt alll day.

[Poppylicious]

I really don't think that he thinks that at all tex, although I wouldn't blame him if occasionally he did.  I suppose I was just being a tad flippant, and maybe trying to see it from his perspective.  He's actually been incredibly supportive of me, what with the redundancy and how it came at quite a bad time (with the op in October I can't even think to start looking for paid employment until at least the end of November).  I try not to grumble anymore purely because I think I'm amazingly lucky to have Blokey, and we're amazingly lucky that he can still work. 

 

[MooseMom]

You know, Poppy, I can understand how you would feel this way.  That doesn't mean I think you are right, but I can understand those feelings.  CKD/ESRD/dialysis never is convenient, never happens at just the right time, never fails to impact every aspect of your life.  And we all have varying definitions of "support", whether it is practical, emotional or psychological.  I would imagine just being there makes Blokey appreciative.  You didn't ask for any of this...you could have scarpered long ago if you had wanted.  But you didn't.  You stuck by him.  How many stories do you read here on IHD about family members bailing once one of us gets sick?  Every day I read such a tale, and even if a spouse/partner/family member doesn't physically leave, sometimes they just can't cope with the stress and leave emotionally.  Not everyone can do what you do, Poppy, with is to just BE there, to just CARE about whether Blokey lives or dies.

If all goes to plan and you are able to donate a kidney to Blokey, well, that's sort of the ultimate in "caregiving", don't you think?

Try not to be quite so hard on yourself.  You don't deserve that.

[lmunchkin]

TS, is RM really coming over with a machine to fix your coffee?  You better "Watch" him!  lol  He can be "quite the charmer".  Just kidden!
I know alot of us try to go above and beyond our comfort zones for our spouses, but even though it can be exhausting at times, I still cherish every moment that God has given me with my husband!

I have decided that the things that need to be done, and trust me this use to so not be me, house cleaning to a "sparkle" or yardwork, cooking and all that other stuff, is so trivial!  I use to think they were so important!  My house looks like.......and cooking is something we just figure out when the time comes, and all the other stuff jus don't mean nothing anymore!  My time with J and his time with me is Top Priority right now!

Now, for the past year, everything has been good with J's Dialysis!  As I have said before, his labs are great and improving! Thank God! Now all this fretting we have been doing about his diet, we just stopped it!  Seriously!  He has just watched his portions and days he does not D. he is eats very little and drinks even less!  I really have to give him credit for that!

Now that everything has settled down with him, I feel blessed, because like Looney, BB, TS, Boswife, Billmoria, MM and so many others on here and what they are having to deal with, just really makes me appreciate the "peace", If you will, in Dialysis!  And I know, that that could change on a dime!  I know it and all of us know it!  It is the "unseen" parts of this disease that will     "slap you silly".

So TS, thanks again, for your thoughts of us all and you and Richard, have a cup on me! TS, your incident that you went through is somewhat similar with what I went through many moons ago, but Hubby did not have this disease back then!  Man, you went through it gal!

Gotta go to bed now, work comes early!  Love to all!     

lmunchkin     

 

[okarol]

When did the term change from "caretaker" to "caregiver"? 

[looneytunes]

Great question, Okarol.  I was thinking back many years ago when I was actually called a caretaker by a doctor.  At the time I had a special needs child.  But over the years, it has evolved and I have to say I lke the term caregiver a little better.  Caretaker seems to suggest a more passive role of just cleaning up the messes while caregiver implies a more active role or partnership in the situation.  At least to me, anyway. 

Poppy....you are a great caregiver, giving the gift of a kidney to Blokey is such a selfless act.  You're my hero of the day.

TS...you have overcome a lot of things in your life.  And you have remained strong and are getting stronger by the day. 

Munch...you are the epitome of a caregiver, not only to your husband but to all of us.

Each of you have "given" of yourselves, over and over, to provide comfort to those you love.  Not easy at times but that is what a caregiver does.      

[Poppylicious]

If all goes to plan and you are able to donate a kidney to Blokey, well, that's sort of the ultimate in "caregiving", don't you think?

Try not to be quite so hard on yourself.  You don't deserve that.

I hadn't really thought of it that way.  Thanks, MM! 

When did the term change from "caretaker" to "caregiver"? 

Over here we actually use (and always have done, I think) the term 'carer'.  A 'caretaker' has always been the chap who cares for/looks after a property, like a school or office. 

(Poppylicious ... offering educational snippets everyday!)

 

[texasstyle]

I think I like keeping my house as clean as it can be (not OCD-ish, but close lol) ,is because it is my way of having a control over at least ONE thing in my life. Keeping clutter at bay because there's enough mental clutter already, and clean because it feels good, smells good (especially when I light a smelly pretty kidnd candle) and maybe also uncounciously keeping sanitary helps me think he will not have any cahnce of getting sicker. Wierd I know. Oh the stuff this does to you. Plus, I really don't mind cleaning. This summer I have also been getting a reallot of "me time" so it all balances out.

[lmunchkin]

I wish I could say the same TS, but mine is so gluddered and when I get off work 3:30 (about), I come home fix something to eat and then hook him up! We finish around 9;00pm.  When I do have a little time, Im generally so tired that I welcome the sleep rather than house cleaning!

I do what needs to be done, but it is not a deep cleaning for sure! I will tidy up his dialysis room, but the rest just goes!  Thank goodness, it is just me and him.  They would probably condemn our home if they saw it!  lol   I use to be a very picky house cleaner, but havent been for years now!

In regards to your guitar, do you read music or play by ear?  I come from a musically incline family, but I never learned to read music, but use to play guitar and piano by ear!  Its been years since I have played anything!

lmunchkin