Patient or Caretaker??…..That is A Question!


So…today I’ve been really thinking about the caregiver’s role, when it comes to having a person in the home who is in chronic pain, or ill. Now I feel that I can sort of see both sides of it because I grew up in a home with a sick mother and a father who cared for her, for the most part. My mom had something called “SJS” or “Stephens Johnson Syndrome” and it’s a blood disease of the mucus membranes; the eyes, ears, nose , throat and private parts at times.  She had COPD and a Collagen disease and bronchiectasis ( a disease of the bronchial “tree”).  My mom was in and out of the hospital while I was growing up. I was separated from my family and sent to this or that Aunt’s home or Uncle’s home. As a side note, I want to let you know, if you haven’t read this yet, that I have been abused in just about every which way since I was a child, an infant even. My older two brothers were also abused, but the oldest was the “honorable son” who did everything right and didn’t get it quite as bad as my middle brother and I did. But on the other hand, my middle brother is bi-polar; which they believe my mother suffered from also.  He was very abusive towards me since I was born and my mother told me some stories about me being an infant and how they had to lock the door to my bedroom so he wouldn’t come in and “hurt” me. He was finally diagnosed about 1991, and he was put on Lithium. It worked for awhile and he did really well, until my mom told him that it “made him fat” and that “he looked like Buddha”. So he stopped taking it from that day forward and has still been abusive to me with words, letters, postcards and anything he can do to me as an adult.  We weren’t allowed to have friends over or have them sleep over for the most part. I had a few friends from the neighborhood over a few times but we had to play outside or in the basement. I had one sleepover EVER and my mother said “never again, because the kids might be afraid if she has to go away in an ambulance”.

OK, so I gave you a little bit of history, just to let you know that I have been on that side of the fence.  My mom then died of colon cancer in December, 2002 (only 3 months after my horrible car accident, that injured me for the rest of my life).  A year prior to that December, in September, she had an operation to get the cancer out of her colon. They thought they got it all and they thought it had NOT metastasized. But they were wrong and she died only 14 months later.  We had had an on again and off again relationship since I confronted my parents about the abuse in our household towards me, growing up. I confronted them in 1997 or so and they hated me ever since. My father wrote me a letter and told me that I was “off  the pedestal” and “never to be on it again”! I would meet my mom for a coffee at McDonalds, a neutral spot..but my dad and brothers would hover around driving in and out of the parking lot, trying to scare me the whole time. My mom would try. She brought me a tea cup of my great grandmother’s and she’d bring little things for me to give my daughters. We tried and I think if my older brothers and my father hadn’t stepped in each time and continued to tell her to be mean and to “not forgive me for talking” or for being the “truth bearer”…we might have repaired our relationship somewhat; but she was pretty much “controlled” by my dad. She was controlled to the point of having to leave receipts on the table if she spent a couple of dollars on a coffee while out. Ok…I think you get the point now. But I have been on both sides and I was there for her the day of her surgery and they only allowed one “woman” in the room for her “pre-surgery” that day. She chose ME to be with her for a couple of hours in that room. We did have the best 2 hours ever, together. She and I talked and she sort of “apologized” and I took it for what it was worth. It made me feel good that for one time in my entire life, she actually chose me over anyone else, to spend time with. It was good for us because it had never happened before and would never happen again. That whole day at the hospital, my father and brothers were horrible towards me and my mom’s sister, my Aunt Margaret, was there also. She treated me badly too and she always treated me as a “lesser” person than anyone else. She grabbed my cellphone out of my hands (when I was the one of all the people in the room that day who was the most poor!) and started calling people long distance etc. She never asked me if she could do that and our plan didn’t even allow for that, at the time! My two brothers had much more money than I did and that was so rude! 

On another note…they said that I was never there for her during her Cancer treatment…but I was there at the beginning and whenever I would ask where they were going to be on any given treatment day, they would say that they “didn’t want me around”. They didn’t want me there and they’d never tell me where it was going to be happening. But then they put me down for not going? Then in August of 2002, on the 11th of the month; I got into a horrible car accident, that was only 11 months after my mom’s surgery and Cancer announcement. After the car accident, I was hurt so badly, that I didn’t even know anything. I had gotten an MTBI and had to go to TBI rehab for 3 years! I was in a wheelchair and have had 9 surgeries now so far and acquired a horribly devastating autoimmune, progressive disease called RSD/CRPS or “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. I ended up passing out several times when I would get someone to drive me to go and see her in the hospital, during her last 2 or 3 weeks of life. They teased me and said that I was “faking it”. Well, I wasn’t faking it and I passed out later at a PT appointment and my BP was only 70/40 and my HR was only 23 bpm!! I spent the night in the heart unit and got a pacemaker implanted the next day! I spent a week almost, in the hospital because it was giving me “electric shocks”! We later found out that some nerves were cut because it was placed deep into my Pectoral muscle as a precaution, because I was too thin and it would’ve been too vulnerable. I guess I wasn’t “faking” ?

What I really wanted to talk about today before I kind of got sidetracked with speaking about my own experience at trying to help and being a “caretaker child” for my mother. Is that I got a note from a Caretaker husband of a lady who has RSD/CRPS and some other illness also. He wrote this to me and this is what I wrote back to him:

 *****************My reply to him is 1st & then what he wrote 1st to me is following:
**my response to husband/caregiver: I’m sorry but my husband is committed and has been here with me for 16 yrs & when he’s sick I help whatever I can do. But even he told me to tell you that it is not “AS HARD AS ” it is for him (the caregiver) as it is for me (the pain patient)!!! The caregiver can rest, get sleep on between and can still do things that the chronic pain person cannot do! He would never want to switch places with me …HE Said…& I would never wish this pain on him or anyone….Suzanne
——————–
**Husband said to me: Thanks for accepting. I hope most realize i is as hard for a spouse as those afflicted with the pain. At least for those spouses who are committed and do not run away. Please share our story of such as it is important for as many to learn about such more so then give to this cause.
Thanks,
Pat

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Well, I was discussing this in my support group and got several different opinions from many different people.  I told them that I was going to discuss this in my blog and I do not use last names or real names or anything, so it is OK. I just thought you might like to chime in on some of the things that were said to me about this subject:

One woman wrote this as a response to this Caregiver’s opinion:

I guess its really a perspective issue with the statement “it’s as hard as”. I say this because I know that my husband, who is an amazing, loving, supportive husband, feels so lost, useless, frustrated and helpless because he can’t “make it right”, there’s nothing he can do to “fix it” for me. Some days its ok for him to hug me and some days its not- he usually finds out after hugging me and realize he hurt me, and I will hurt for hours. I’m in a wheelchair, and unless you’ve been in one, you really don’t realize how many things have to be taken into account when planning. He’s planned surprise date nights and they’ve been a flop because of 1 or many possible different issues that arise, or something happens and he feels horrible that the 1 day I get to go out, things don’t go smoothly. So while we’re the ones enduring the pain and all the glories our ailments come with, I think that spouses deal with as intense issues, different ones, as us. I mean at times I feel like my husband has it worst than me- he’s made the choice to b with me regardless of my RSD, he’s voluntarily given up certain dreams. For some spouses, it means giving up entire aspects of their life as a couple. So from certain perspectives I can see how that statement can be true, and yet in other instances it’s not. Regardless, I commend any spouse who not only “sticks around” but remains committed to the marriage, making the best of the situation and continues to see their spouse for who they are and not their illness. Just my opinion.”

Here are a few more responses that I got:

…..”People who aren’t suffering themselves try to fathom it, like I did when my mom first was diagnosed. I thought I could understand. I thought I could guess. I thought I could empathize. I WAS WRONG.”

….”I don’t hurt like I used to so I have started to forget what those who suffer 24/7 every day battle (because I think I have tried to block out that horrible memory.) But I remember the feeling of “this is crazy, this is insane, this can’t be real” always being in my heart and mind. And that is why I try to reach out and help as best I can. Because I was there once, and NONE of you should be there. But EVERY ONCE in a while, it comes back and reminds me of HOW MUCH HELL you all go through every day and why you are all the most amazing, strong and wonderful people I have ever been blessed to have I my life. Because it never stops for you.”

….Then I replied to them with this response: “ My hubby says it is hard to watch and miss some things at times and lots of other bad things for him …BUT… He’s seen me suffer even prior to getting RSD/CRPS with chronic intractable pain from a MVA! Then few years later only to get this 24/7 painful, progressive autoimmune disease… He’s saying its NEVER AS HARD IF YOU AREN’T THE ONE IN PAIN …because he CAN take time outs and breaks and he CAN sleep!!”

***and then I also said:  “One thing that we do know is that there is no cure for RSD/CRPS yet! There are remissions but true diagnosed RSD/CRPS has no cure as of this date ! My husband washes my hair too and he’s the one who said that he hates that I’m in pain but he does Not feel it’s “Just as” bad!! He said when someone has Cancer it’s horrible to watch them be sick & vomit etc… But to hold the sick persons head while vomiting is not as hard as doing the chemo or the vomiting! **this was per my hubby”…

…..another woman wrote: “Suzanne, he is so very very right. We have all been sick to our stomach, but when you wake up from what little restless sleep you got ready to vomit from pain your body was feeling in your sleep, healthy people rarely can sympathize with that. Or breaking down sobbing because you want to sleep, you’re exhausted beyond the breaking point, but the sleep can’t come because the pain WON’T LET UP. It’s just insanity that no healthy person can fathom because they can keep themselves awake only so long…. to the point it hurts, but their body WILL GO TO SLEEP at some point.”

…….and then a woman wrote this: “SO WELL SAID EVERYONE!! RUTH I THINK YOU ARE LIVING MY LIFE!! MY HUSBAND HAS BEEN AWESOME. HE’S BEEN RIGHT THERE WITH ALL MY PAIN AND MY TEARS. HE NEVER SAID NOT ONE TIME THAT HE UNDERSTAND HOW I FEEL BUT SAYS HE CAN ONLY IMAGINE HOW I FEEL. I EVEN TOLD HIM THAT I KNOW THAT HE DID NOT SIGN UP FOR THIS AND THAT IF HE WANTED TO LEAVE I WOULD TOTALLY UNDERSTAND!! HE SAID FOR BETTER OR WORSE IN SICKNESS AND IN HEALTH THAT HE WAS HERE TILL THE END!! I APPLAUD ALL SPOUSES WHO REMAIN AT OURS SIDES TO ENDURE OUR GOOD DAYS AND BAD DAYS WITH US!!”

……and then later, this response was sent to me from another person: 

Suzanne, I hope you don’t mind – but I would like to “weigh in” on this subject. Thanks for the invitation. First, I do not feel it is for any one of us to tell another what is or isn’t appropriate to feel – whether being the “sick” is harder or the “one” watching is harder. I would not ever want someone to devalue what my husband/caregiver might feel. I’ve been married for 28 years, and have had RSD for 18yrs (15 full body/systemic.) I also have a daughter (now 24), who has had medical problems since birth. She also has some type of neuropathic pain that is currently undiagnosed, but has MANY of the characteristics of RSD. We have almost lost her 6 times. So I feel I can speak from BOTH sides. And what I can tell you, is that is complete and utter TORTURE for me to watch her suffer, because I LOVE her. During times of her serious illnesses, or those that have caused her great pain, I often feel it is harder for me to watch helplessly, than had I been the one to take on her illness, and I’ve actually prayed to God, to have Him give me her share of the illness and pain, as it is so very hard to watch helplessly, as she fights to overcome whatever illness/pain she’s going through.
Most of the time, I DO feel that it is harder on my husband than it is for me. They have to watch someone who is in pain every minute of every day and there is nothing they can do to help. I think it’s especially hard for a husband to watch his wife suffer, while he is incapable of doing anything to make us better. Most husbands/men are “fixers”, but they are helpless in “fixing” us. I would guess many of them feel that they have somehow failed in finding us the help/the care/the cure that they want so badly for us.
Not only that — but they also have to work and make a living, all while caring for us. Add to that, doing laundry, cooking meals, cleaning house, grocery shopping, running errands, taking care of the kids, and all that lies in between. Our spouses have to take up every minute of their day doing something that we would have ordinarily done.
Although they may get some sleep and can do many things that we can no longer do, even those things don’t go “unpunished” in some manner. They spend a lot of time thinking of all the things we used to do together. They worry whether we will progress and continue to get worse, wondering if they will be able to take care of us all of our lives – worrying what happens to us if they are no longer here to take care of us. ALL of these things go through their minds. Oh — and those things they can do that we can no longer do?? Even that can make them feel guilty for doing. We might reminisce about doing it with them, and so when they do those things – they might not enjoy it quite as much. Not anymore – because they know we would LOVE to do it with them, we’d give just about anything to do it with them. So, because what this, they might still do it, but not without feeling some sort of “twisted guilt” – guilt when there should be no guilt – but is, nonetheless. They now do those things with friends or other family, or by themselves – or – not at all.
Even lying down at night – either next to us – or in the other room (because we might not be able to handle movement of the bed, snoring, the movement of the sheets anytime they move, or even the temperature in the room or the bed covers/blankets, etc., etc.) they WORRY.
I think with all things considered – watching my daughter being so sick (she’s spent 1/3 of her life in the hospital) and myself being so far progressed w/this disease — I DO think it’s harder on my husband, than it is on me. I feel so very guilty knowing he’s working for a living, to keep a roof over my head, putting our kids through college, paying the expenses – all of the things mentioned above. Watching him vacuum, or do laundry while I’m laying in bed or on the couch because I physically can’t do it — I feel guilty – but even more than that – I am so very, very GRATEFUL that my husband is one of few that truly hang around to deal with all that has been thrown their way. If ANYONE doesn’t think these men spend time crying and worrying — and even thinking how different life could’ve – my bet is, they’re wrong, because even those of us WITH RSD spend time thinking about how life could’ve been.
I hope this makes sense to all who take time to read it. While we would never ever wish this illness on our spouses/caretakers -in the same manner, I would never ever wish their role on anyone else, and think it’s not only important, but it’s VITAL that they are welcomed in, and are able to learn as much as they can about this disease, so that they can help their spouse in dealing with this horrid thing called RSD/CRPS. (Sorry for the length, just thought it was too big a subject to not give it my full attention.) Love and soft hugs to all!!

another woman responded with this: “ Suzanne Burnett Stewart thanks for posting this, it actually opened the door for me and my hubby to have this discussion. Hes not one to really voice his feelings but being it was in response to this post we actually had a great conversation, yet another opportunity for us to appreciate each other and walk in each others shoes” for a minute

and then I responded to that with these words, to the woman prior to the response just above this: 

You’re very welcome ! And I hope it allows others to talk with each other! I definitely asked anyone to “weigh in” because I wanted and welcome all opinions and I value all opinions! Just as I like my opinion valued. Thank you Susie for your opinion and fir the record, I grew up with a very ill mother who had “SJS”, horrible , painful blood disease. She was in and out of the hospital all of my life and she lost 10 out of 13 children which means I lost several siblings and two that were after me and I actually remember the ordeal. My family and I were robbed when I was 11 at a shoe store with 2 men with guns to my fathers head and knocked my sick mother down and out cold!…still they were horribly abusive… But I loved my mom nonetheless and I became a caretaker the older I got. I wasn’t a spouse but a child of a very long term very I’ll mother. I do know both sides and it was horrible feeling helpless…when she’d cry and bang her head on the wall due to the pain, i felt scared, alone, hopeless & helpless! I was not judging that husband but giving my opinion because as my mom eventually died of colon cancer and I just know that no matter how bad I /we felt for her during chemo and such, and no matter how much I felt so helpless and never got to go shopping with my mother in my whole life and missed out on loads of family things and times … No matter any of that …it was still, in my opinion much easier for me to hold the bucket for her, sing to her, watch her die (while I was in a wheelchair in pain too,) than it was for her to be the one dying and going through chemo and radiation.!!! So I feel that I have a good idea of both sides and have been through so much that I have a good grasp on both sides of the “fence”…and I can honestly say it was horrible sitting with my mom when she was in so much pain and somehow …rubbing her feet and singing to her and telling her that I forgave her for everything that happened was very horrible too…but her dying in pain and her lifetime of pain …it was still , only in my own opinion, much harder for her… and my husband had his own opinion and that is what I wrote above…he feels how he feels and we are all entitled to our opinions and our feelings. I am so happy to have opened up the lines of communication for some of you and those you love. That’s what I’m here for… Only to listen, talk and help… Thank you all so much and you may keep the conversation going as long as you wish! I also feel that everyone’s “worst” is theirs and they feel it and they own it… I think with regards to that one husband…he definitely has a right to his opinion and his feelings.. We own those! I just discussed it with my husband and got his view and then gave his view and mine and we all started giving our opinions. There is no right or wrong here. We can only continue to love and try to be loved and not everyone will always see things the same way and that is how our Lord made us! That is good! His bless and nite nite to all!
Finally, I got one more response from the woman that I had just responded to and this is what she said to me:

That’s the idea of discussions Suzanne! I’m so glad you opened it up – and thanks for doing so, as I think this subject is a very important one! Hopefully it will give some of our caretakers the idea that no matter how they feel – it is OK to feel what they’re feeling! I know I would NEVER wish this on my husband, nor would he want it! LOL He has actually told me that he doesn’t think he could go through all that I go through, so of course, he feels it’s harder for me – but I guess I see all that he does, and somehow, in the long run, it’s probably about even, as he’s picked up so very much of all the family’s things that MUST get done/should be done as good parents, etc. He works tirelessly 7 days a week making sure that we have clean clothes, a clean home, and of course making a living so that we have a roof over our heads and the ability to get good medical care.
This has opened up good conversations for married couples or even parent/child relationships for each party to know that no matter what they feel – the empathy for us, the feeling that they have it truly hard, even that they are happy that they do have it — all of those feelings are OK and normal! When we take our vows, it’s for better or worse, in sickness and in health. Sometimes, the sickness happens to be things like this, and I applaud those parents and spouses who “stick together” through all of this, supporting and loving us through it all. I want everyone to know that just because we are sick, does not in any way make us less of a wife (husband), partner, and friend, but whatever our caretakers feel, whether they feel it’s harder on them or us — it’s still what it is, and no, it’s not fair, but it is life – and this is just another turn within our lives, and happiness can be found, even through this! Love and hugs to all! Night!

Well, then I got a few more responses of a word or sentence with people agreeing or disagreeing politely. But I thought this was a great topic for a discussion. I still feel, no matter what anyone else says…that it is much easier to be the one holding back the hair or the forehead, if there is a lack of hair; while someone is vomiting from chemo treatment.  It’s much harder being the one to feel awful, hurt like hell, and be sick, feel lifeless etc; but yes….yes…it is very hard being the caretaker also…but in a different way.  Thanks for reading today and I hope your day is a pleasant one….love and hugs, SuzanneImage

 

 

 

 

 

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