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Patient/Caregiver Relationships are HARD | Let's Talk IBD 

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In this video I talk about relationships developing/changing after a chronic illness diagnosis.
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2 дек 2021

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Комментарии : 81   
@katie-n-mr-hobbs1111
@katie-n-mr-hobbs1111 2 года назад
My husband took on the role of my "caregiver" for want of a better word, and things went full circle. He got an aggressive, terminal brain cancer and I was his 100% caregiver. And then he died. We were the world to each other. We didn't "need" other people and being a second marriage for us both, and me coming from a different country - well there just wasn't family-and-friends as any kind of safety net. After 20+ years, he is gone but my illnesses still persist. Now I have to learn to be my own caregiver, and do it all alone, with a thick layer of grief slathered on the top. And I'm in my early 50's. It's not like I'm 140 with one foot in the "rest home". No .... I need to live, with the one I cannot live without. It is torture. I am glad you are blessed with your husband, family and friends, and the insight into all the dynamics. You will always "be okay".
@pjk1714
@pjk1714 2 года назад
Thank you for sharing your story. You might be surprised but many are walking the same path. Finding the way can be drawn by experience from past despite the enormous loss. You aren't alone in that path. Take care
@JM-ig4ed
@JM-ig4ed 2 года назад
One thing I would mention when you were saying you didn't want to go to the emergency room even though you were sick. It is incredibally stressful to be the caretaker when the patient refuses to go. When you are the sick one and your caregiver person says I think you need to go - you need to go for their sake. Somemtimes as a caregiver you don't feel competent to handle the situation. This happens a lot when the patient puts pressure to get released from the hospital when the caregiver doesn't feel ready to handle the coming home part. I could tell MANY stories about both sides of this issue. Thanks again.
@eviesabo4871
@eviesabo4871 2 года назад
TOTALLY AGREE!!! My husband has multiple medical problems and he will say I don’t feel well and will mention how he feels. I have him take his blood pressure and it’s right at the line of possibility calling an ambulance and I suggest going LITERALLY ACROSS THE STREET less than a 1/4 to 1/2 mile and he’ll say I will be okay it’s been higher!!! I feel so helpless and want to give up hope like I’m trying to keep you from having a stroke and you aren’t even advocating for yourself!!
@Nelle4ever
@Nelle4ever 2 года назад
I understand it from both sides, but I know as a patient you're often not very rational when you're very unwell.
@peggysue1725
@peggysue1725 2 года назад
I understand the point of view of caregivers but it's not really fair to not understand that it's the patient that has been to the hospital 101 times, had all the pain, all the waiting.. sometimes the patient knows if he goes to the hospital YET AGAIN, the only thing that happens is that instead of suffering in the comfort of their homes, they have to suffer in the corridor of the emergency room. It's easy for the caregiver to lose their head and forget the additional pain the patient has to endure if there isn't much the hospital can do anyway...
@JM-ig4ed
@JM-ig4ed 2 года назад
@@peggysue1725 I totally understand your point and do know the reluctance to want to go again and again. I was in the situation of being the caretaker / spouse for 9 years. Many many serious operations - open heart, pacemaker, multiple dialysis issues, leg surgeries, partial amputations. Many times the doc wouldn't think he would live through the night only to be told next day he can coe home. Or after major surgeries they want to dismiss, patient is putting pressure to come home, but as the caregiver, I know I have to get him in the car the next day to go to dialysis and not able to do it - or not able to take on the challenges of wound care. When the patient WON'T (refuses) do the things necessary for their own recovery and puts themselves at risk yet again and again by not complying. Then, the caregiver has to bear the brunt of missing work etc because of stubborness. Totally get it from patient point of view, but many patients and doctors have to understand the caregiver position also. When I struggled with needing additional help and asked the doctor to help with something to transition with, he refused because the patient (X) said no - I don't need anything else. I would just break down an dcry not knowing what else I could do. Most of this only applies in situations where it is chronic care with many many urgent surgeries along with it. Thanks for your reponse - sorry for my rambling. .
@helengarrett6378
@helengarrett6378 2 года назад
I was a caregiver, in home health care, to be exact. On one occasion an indomitable woman I was caring for was having a breathing crisis. She couldn't breathe because of serious emphysema. She asked me to call her son who couldn't come right away. He was completely tied up and she would not let me call an ambulance. She flatly refused to go to the hospital either. Finally I had to tell her, Let me take you to the ER or this will be my last day. I have a duty of care and you need more than your oxygen. You are in crisis." I got her into her wheelchair, into my car and to the nearest hospital ten minutes away and she was immediately hospitalized. Sometimes the patient thinks they know best but they don't. Your responsibility to Zack is to try to be logical, not just strictly stoic. You are aware of that, I think but it still needs a little work. One thing you can do for Zack is to let him know that he can stop feeling helpless. He can't fix your health. But he can enjoy the living daylights out of times when you are well, and just endure the rest because it will get better one way or another. Zack is learning what men have a hard time understanding at a fundamental level. Men want to fix things. They are action oriented. Sometimes there is no fix. Life with a person with chronic health problems is a roller coaster ride. It's rush for a bowl or clean up the mess and go watch T.V. or play video games in close proximity (with earphones on ofcourse.) Sometimes it is a kind and loving pat and sympathy when you are crying and other times it is a hilarious romp in the snow. Zack can't fix the ups or downs. He can only love you and carry on. He can be there for a shoulder to cry on and be your steady rock and he can play in a zoo full of lights. He can endure.
@karenlangford7019
@karenlangford7019 2 года назад
I love this video. I have had ovarian cancer for four years so my husband became my caregiver. I hate that he has to take care of me, but I’m incredibly lucky to have him.
@purple_pecan
@purple_pecan 2 года назад
Since we started dating in 2018, my person has been through so much with me in terms of my chronic illness. He has woken up in the middle of the night to rub my back and comfort me when I'm sobbing from pain. He has back problems of his own and has spent countless days massaging certain areas or just taking care of me even when he's hurting. I just had my fourth surgery in the past year and a half, and I always make sure to acknowledge that I am not the only one going through this stuff. Yes, I am the only one experiencing the physical pain on my end but he is taking care of me, AND he has to stand by and watch me hurting when there's often very little he can do to help, which is a terrible position to be in. I can see how much it means to him when I point out that he is going through nearly as much as I am with all of my health problems. I also feel it's important to pay attention to what he goes through because it encourages me to be a good caregiver when he's really hurting from his own things, and pushes me to be his caregiver maybe when I don't feel like I want to be but I'm not in a flare-up myself and therefore /am/ able to go help him.
@JM-ig4ed
@JM-ig4ed 2 года назад
Wow - such an important topic. I have been in the position of being the sick one needing support - and later had a 9 year caregiver time to my X when he was on dialysis, and then again later with my mother when she was in her 90's. So much stress on all sides. Thanks for taking the topic on.
@victoriareynolds8645
@victoriareynolds8645 2 года назад
My husband and I use humor and make sure we both stay as healthy as possible so that we can.
@appalachianfamilyrecipes4647
@appalachianfamilyrecipes4647 2 года назад
This really hits home to me as I’m a caregiver to my husband who suffered a major traumatic brain injury and our son who has type 1 diabetes, Hashimotos Thyroiditis, and asthma. I never considered the impact a caregiver being frustrated can have on the loved one. Thank you for sharing this, it was very helpful.
@wondertwin13
@wondertwin13 2 года назад
Yah it’s definitly a fine balance of someone helping you when you need it most, whether it’s dealing with hospital staff, pharmacy, personal things like groceries, & paying bills etc etc or just being there for an ear/comfort. I’m now divorced and no it had nothing to do with my Crohns. My mom and I are now closer than we have ever been, and that’s HUGE! We always had a very tough time being around eachother. Nowadays I can say “Whoa, please stop” and she actually stops. I know that the constant questions/inquiry regarding my health are just because she loves me but we are OUR OWN best advocate. As long as we are able to do so. She now understands this and I still remind her (gently) because now the tables are starting to turn and she might be needing MY help in the not so distant future. This was an excellent topic Maggie. Thank you for posting this❤️👍
@JessicaAhearnTarot11
@JessicaAhearnTarot11 2 года назад
Thank you for doing this video its something that needs to be talked about more. The first time my husband saw me really sick was 7 months into our marriage and I went septic and was in the ICU for a month. My husband of 8 years knew that I was sick and that I would be sick for the rest of my life when he chose to marry me. He was great in the beginning for the first couple years but then he started to get frustrated and tired of always having to take care of me. I will admit that I leaned on him a lot whenever I was really sick and couldn't do things for myself and I also leaned on him to help me with my appointments and doctors. So I do understand why he would be tired and sick of taking care of me because he did a lot. However i started to resent him for making me feel like a burden. But on the other hand i think to myself that i have to deal with my illness every second of every day so he shouldn't complain because he knew about my illness when we got together. But I always have to check myself and tell myself that my husband does a lot for me and if it was the other way around I dont know how I would be his support system if the shoe was on the other foot because I get stressed out when he gets a cut and needs to get stitches. So I always need to remember how stressful it is to take care of someone else and how scary it can be for the caregiver when things go seriously bad. The caregiver patient relationship is one that needs to be built on understanding and patience for both sides. It's hard to balance everything when situations are so stressful so its going to be a continuous process of growing together.
@catloverKD
@catloverKD 2 года назад
I don't know if your dad would be willing, but I'd love another video about this with him. My parents are divorced and I was raised from 8 years old by my mom. My dad was involved, but we aren't close. Of course I was visiting him when I got my first period, I couldn't even tell him! So, I get the whole "Teenage girl has to tell her dad about embarrassing symptoms" I wondered if it would be easier for you since you were closer to him, but I guess not.
@eviesabo4871
@eviesabo4871 2 года назад
Maggie thank you for your perspective as the child’s view as my son as I’ve mentioned on here had accidents in class bc his teacher only allowed 1 bathroom pass per hour and when your in a flare not only do you not feel good if you don’t get to the bathroom in time it will leak out anyway and it was so embarrassing for him. I’m grateful he and I were close but it still had got be hard for him
@yesterdaydream
@yesterdaydream 2 года назад
Did you talk to the teacher/school about this? How did they respond? I'll never understand teachers being so controlling about bathroom time, ESPECIALLY if a student has conditions that necessitate extra visits! Even if a "healthy" student was taking advantage of bathroom time, that's on them for what they miss in class. Like, who cares, as long as they're not taking up the only toilet available when someone really needs it? There's probably a deeper reason why they needed to check out of classroom. Anyway, sorry your son had to go through that.
@saintejeannedarc9460
@saintejeannedarc9460 5 месяцев назад
@@yesterdaydream I'm going to guess the teacher either didn't know the boy had this condition, or if they didn't, they didn't understand. I wouldn't just know that a bag would need to be changed more than once an hour, but w/ a condition like that, you sure don't want the poor kid having an accident, so you let them do what they need to do.
@amymyers79
@amymyers79 2 года назад
I had a 104 fever once. I went to the ER and apparently my fever was so high that I was acting delirious. One of my nurses told me she's surprised I drove myself there. You're right, you really do feel "off".
@HydeandSeeker
@HydeandSeeker 2 года назад
Love your one bulb blinking tree!! She's a rebel!
@stevedianepascot7354
@stevedianepascot7354 2 года назад
My husband started following you when he was undergoing treatment for rectal cancer a few years ago - your openness and incredibly helpful information were an absolute godsend to both of us. I was recently diagnosed with a chronic disease that will at some point have him taking on the caregiver role in our relationship. Just by chance, this video popped up in RU-vid as I was looking for something else. And once again, I found myself thinking ‘thank you, Maggie’ for tackling hard topics with such openness and grace for both your support people and yourself.
@charlotterichardson1239
@charlotterichardson1239 2 года назад
You are the sweetest you tube person I have ever watched. I pray for you and Zak and know your life together is to be the very best.
@leah2332
@leah2332 2 года назад
Thanks Maggie ❤️
@molchmolchmolchmolch
@molchmolchmolchmolch 2 года назад
It's so good that you are talking about all the complex and difficult stuff. It's always a big help when you see and hear others address things that happen in the trenches with humans. The places where everyone struggles and there is no "easy". But I'm not going to watch for now bc I feel I'm glad it's not something I've had to deal with (yet).
@lwc3310
@lwc3310 2 года назад
Greetings from France. Thanks for this superb vlog, Maggie. Would enjoy a video with Zak sharing his vantage point -- his sentiments, thoughts, emotions, as a caring husband and steadfast support person. 😉😚
@jhenfresh
@jhenfresh 2 года назад
Great video Mag! Very important topic. Thanks for sharing.
@wyomingfibers5463
@wyomingfibers5463 2 года назад
I totally understand not wanting to go to the ER. Unless I'm bleeding out or have a horrible infection I avoide that place. I see your point about a caregiver having just as much if not more weight on them as the patient. I do my best to not be a burden and to be grateful for everyday my caregiver is with me. I thank her for the things she does for me and I tell her I am grateful for her at least once a week. I want her to know that without her I'd be dead. We are a team, but it's not always easy. We have our disagreements and we have to work through them. Trying to address issues when she is overwhelmed or when I'm sick/hurt is not a good idea so we wait until we are feelig better to address issues. Otherwise heated tongues can hurt eachother's feelings.
@karmacharmskittens
@karmacharmskittens 2 года назад
Great topic. God bless all of the support givers who make journey with us! Love the sweater Maggie you look super cute 😻
@LaurieButts
@LaurieButts 2 года назад
Maggie, you are a magnificent communicator. I am the caregiver of my son who was diagnosed with Crohn’s and had a section at 10. He’s now 28 and in charge of his own care. He’s married with two young children. I have given the deep care for years with all the decision making and then had to release the decision making. This stage can also be tricky when parents are caregivers, as you know. He’s doing well. Thank you for your story!
@DesMowadeng
@DesMowadeng 2 года назад
I definitely wanted to come back and watch this again. It was such an awesome topic I am glad it's being addressed. It's needed to be for a long time. It's been my experiences (meaning doesn't require judgement or the input of opinions of others) as someone with a disability I was born with that people, especially family who are not paid to be a care giver, get sick of doing it when there is no end to it. They use having to care for people as an excuse for getting out of other obligations they don't really want to do rather then be honest. They add additional stress on the only person in the equasion who is the only one with a disability/illness. With either paid care givers or family it is not helpful or healthy to be taking care of someone and while doing so listing the million other things on your plate/things that you have to do to the person you are caring for. It just causes tension, resentment, and guilt. Of course those who are paid come with their own set of unique challenges but at least in that case the ill/disabled person has a safe out. If im paying you and your not doing things in a way best for me its a job that you do so I can let you go. To me a care giver is only and should only ever be a word used if the person is paid for doing a service and NOT ever in any way for ANY reason should a family member be considered a care giver or be paid. You care for people you love. It's human nature it's how it's suppose to be. The fact that someone is disabled or ill should never enter into the equasion. Having it do so is shaming and blaming an ill/disabled person for something beyond their control. You as an external person CAN escape and get away from what is involved in caring for someone when the someone you are caring for can not. If you realistically think about it, how often in childhood especially does a child get sick or injured? You don't become a care giver you are just the parent doing what parents do but with illness or disability society makes it different as if it's worse, somehow bad, or wrong. The way society places care givers on a level above who they care for is hugely problematic, especially for the disabled community. We need them and because we do it often leads to abuse and most certainly causes mental health issues. At the very least there is a lot of guilt and shame that the ill or disabled person deals with because the other person is needed when we want and desire more then anything to be doing most of what we need help with on our own. The care giver does not need to take care of us BUT we need to be taken care of if that makes sense. To highlight the role of a care giver and there importance especially in the disabled community when it's a partner/spouse we get seen as having lesser value and unable to contribute to a relationship in a meaningful way because of the disability. We are often questioned publically plus it is assumed that anyone around has to be caring for us and are not just friends or partners but responsible for us in ways they truly aren't. It's not fair that kids who are not sick/disabled get to have a mom and dad but those with disabilities/illnesses are burdens that need to be taken care of by care givers. And adults get to have partners or spouses but disabled adults don't really. Lots to unpack with this topic because it can definitely be very toxic and damaging! There is always a power dynamic that exists but isn't ever spoken of when you are dealing with any two people where one is or perceived to be weaker physically or mentally as a result of being disabled or ill.
@Nelle4ever
@Nelle4ever 2 года назад
I appreciate the honesty of this video and just the trite "caregivers should take good care of themselves and pull in other people to help" when there may not be anyone else, or in your dad's case, in the beginning, he genuinely didn't know how sick you were and that he was caregivers in a very serious illness way.
@mariacourteau9578
@mariacourteau9578 2 года назад
You are so very amazing Maggie! I can't imagine being as young as you were when all your illness started and having to go through everything that you went through and are still going through. People seem to forget that marriage is For Better or Worse at least it's supposed to be and some of us can't help that we have autoimmune conditions or chronic conditions, like people think we want to be like this? It's definitely good to put a shout out to the caregivers who are there for us when we need them. And yes it's very stressful on everyone. I'm glad you have a good support system! I'm also glad that Zach is trying to learn all the ways to help you. That's true love! Take care sweetie🙏
@womble621
@womble621 2 года назад
Excellent, and so many things you said, I thought "thats me too!", and Ive been married 44years. Well done!
@bethanymckeel4180
@bethanymckeel4180 2 года назад
This was a great video! People want to care for their loved ones but it can be tiring sometimes-its good to talk about it. The worst part about care giving is feeling helpless-- you want to help make it better sooo bad!
@wendyy__6893
@wendyy__6893 2 года назад
Thanks again Maggie for such an important topic you’ve shared with us on this video. My fiancé has been my caregiver for the past few years now especially these last two that we’ve moved in together & I’ve had 3 surgeries due to my UC. He’s shown me patience, love & compassion❤️ he’s also known of my condition since day 1 of dating each other just like you said he knew what he was getting into when we started dating 😅 I’ve never thought how far our relationship would go especially with everything I’ve been through (health wise).
@ruthbrodie6313
@ruthbrodie6313 2 года назад
This is so relatable to me and my husband. He had to learn that chronic sickness isn't solved by some chicken soup. By the time I got my ostomy he was in a place where he was able to help me with my bag changes. But you're totally right, it took years to get to the point of understanding. Your videos always remind me that other people are in similar positions. Thank you. I hope you had a lovely Xmas xx
@aprilpfeiffer367
@aprilpfeiffer367 2 года назад
I also have crohn's disease. I've been watching for a while and think you are doing a good service for a lot people. With crohn's it can be so misunderstood, you can be so sick but most can't see it so it can be hard for others to know how sick we are at time's keep up doing this your doing good for lots of people.
@francespaul3713
@francespaul3713 2 года назад
I take care of an almost 96-year-old mom you have to have a lot of patience and get as much help as you can and surround yourself with good friends. I really love your channel your husband is very loving. Prayers for you both. Friends daughter has Crohn's told her to watch the channel..
@AlanaClaassen
@AlanaClaassen 2 года назад
Would looove a video on how to be a better caregiver! Always love watching your videos - they are so informative! 🤩😍
@JPMasonDun
@JPMasonDun 2 года назад
Blessings to both of you! Marriage is not easy, but both my husband and I have both taken turns being patient and caregiver. I’ve learned to tell him right away that I’m not feeling well so that he knows that anything can happen. And he appreciates that too. And vice versa…. You and Zak are doing great actually. It’s a learning curve and to be expected.
@gamergirllexi_lovesevery1
@gamergirllexi_lovesevery1 2 года назад
I was married for almost 9 years when I had my urostomy surgery and our 10th year ended up getting divorced due to my ex said that they couldn't keep doing this they where working in residential homes and then coming home and was being a caregiver to me because I was so sick and had tons of complications. It got to be to much stress and anxiety and they were getting depressed they weren't putting themselves first . I've had severe health issues since we got married but just keep getting worse! You two are Amazing! I love your videos so much! You are a blessing for Ostomates! Much ♥️!
@deefitzgerald2906
@deefitzgerald2906 2 года назад
Maggie YOU are ABSOLUTELY a BEAUTIFUL YOUNG LADY…….My MOM suffers with a lot small intestine she has a very small closer in them and for her to go bathroom is almost more than she can stand and she had 8 children and back in her day YOU GOT NOTHING ……So she can stand some pain but this has put her in the Hospital many times…..Thank You for sharing your story I feel that you have helped so many people……
@Chronicallyillbadass1995
@Chronicallyillbadass1995 2 года назад
My mom and I are close like this. She’s a single mom, im also a twin but she’s healthy. I was born sick, tons of surgeries, she had to move back to her home town to have help from her mom. Im 26 now and I can’t live alone, i am independent unless im chronic illness sick. Edit: I hope I meet someone like Zack! I’m scared I’d be too much for someone. I have a j-tube for meds and formula g-tube to drain my stomach 32% lunch function. I have 12 chronic illnesses and my g-tube is embarrassing because it’s literally a bag of basically vomit some people see it as a waste of food to eat something then drain it out minutes later from the stomach
@seethaabraham
@seethaabraham 2 года назад
Thank you for sharing your struggles and being vulnerable. I have been a caregiver to my husband and often was more anxious than he was
@eviesabo4871
@eviesabo4871 2 года назад
🙋🏼‍♀️ that’s me right now. I watch him suffering and I give him advise not as a nurse but I know just enough to know you need a PROFESSIONAL opinion with xyz symptoms…..
@PragerFenster
@PragerFenster 2 года назад
So sorry about everything you had to get through, also as a result of inadequate diagnosis
@pjk1714
@pjk1714 2 года назад
It can be hard to be your own advocate. It's also necessary when a parent or caregiver is. We journal everything to get the points across to medical teams. After years being the patient, I had to be the voice for my child. A Doctor tried to send us off without an x-ray assuming just a bad cold. I told him pneumonia and collapse lung and was right. My child spent two weeks in hospital. Now l limit that responsibility on others, I fight the system for care when needed. I'm glad you shared your story and you are fortunate to have people around you that care.
@alchemyofcolorandstyle
@alchemyofcolorandstyle 2 года назад
Friendly reminder to watch out when lights are malfunctioning: they’re always an electric hazard
@Em280483
@Em280483 2 года назад
I am so glad you have each other & that you have a wonderful dad. Has your dad featured in any of your videos? It would be interesting to hear how he found things. All the best to you xx
@gonnabeok.
@gonnabeok. 2 года назад
Great video Maggie.
@hayleygebhart1764
@hayleygebhart1764 2 года назад
I like your honesty with chronic illness with marriage. I have endometriosis over 25 years, my husband has Parkinson’s for 4 half years now. We also have a daughter that has type 1 diabetes since she was 8 now she’s 22 years old but we are still involved in her diabetes health. And our son 25 is a caregiver also when he was younger. My sister also has Crohns also for about 26 years.
@katie6044
@katie6044 2 года назад
I have lupus, rheumatoid arthritis, Crohn's, and I had to have my pancreas, gallbladder, spleen, part of my stomach, and part of my intestines removed due to a spink1 generic mutation causing pancreatic cancer and chronic pancreatis. My husband has been with me through all of it, and I totally get every single word you're saying. I'm a brittle type 1 diabetic now, and my bg drops all of the time. I try so hard not to complain because I know he feels helpless in the face of my pain, stress, and inability to control any of it, really. Sometimes he's mad, and I know it's because he wants to fix it. Sometimes I'm mad because I don't know how I would make it without him. I also have two daughters, 19yrs, and 10yrs. My oldest daughter is trying so hard to help, and that makes me feel even more guilty. Chronic illness just sucks sometimes, and there's nothing anyone can say or do. We just keep living, sometimes to the best of our ability and sometimes not - and that's ok, too. ❤️
@valinajames209
@valinajames209 2 года назад
After ten years of marriage I was diagnosed with stage III cancer. I ended up needing a stem cell transplant. Throughout the entire two years of treatment my husband was my best support and advocate. We have now been married over thirty years and he still sees me more as a patient sometimes than as a spouse. It is really hard to balance both roles and keep a healthy marriage. If you have more advice on that, it would be really helpful to hear. Thank you for sharing so openly about your daily life.
@alchemyofcolorandstyle
@alchemyofcolorandstyle 2 года назад
Im so sorry about this. Please remember it’s not your fault how they see you. It’s a reflection of their values.
@saintejeannedarc9460
@saintejeannedarc9460 5 месяцев назад
I don't understand why someone would feel sorry for Zak? He loves you, and you clearly love him. You both clearly make each other happy. He takes your disability issues completely in stride. Nothing about that man looks burdened or oppressed. He just seems happy and grateful to have you as his wife and you to have him as your husband. You really seem like a great couple.
@catman58
@catman58 2 года назад
There's a red one behind the blue one on top that's blinking too
@OddlyElly
@OddlyElly 2 года назад
Hehe yeah, it's a difficult learning curve. I text my husband a lot because between brain fog, nausea, and him wearing headphones in another room he doesn't always hear me call out. He is also so good about my fatigue and zero judgement if all I manage in a day is napping 😅 Checking in with him even when I'm feeling super rough helps to make sure there is no issues. Healthy communication and giving each other space to just exist. I always give him space to unwind after work, especially when I've been sick. It's one of the many reasons I'm so happy to be with him and hopefully starting our family next year (at some point 😅).
@Honkey-Donkey
@Honkey-Donkey 2 года назад
Tough topic. I was caregiver to my grandma and each of my parents, all were bed bound. Oh and grandma had late stage Alzheimer's. I was going through an ugly divorce and had a kid to raise, plus numerous chronic illnesses myself. Very, very rough years. I can't say that any one thing helped, as I found that each relationship changed over time. All I know now is that they're gone and I feel terrible guilt that I wasn't good enough. Currently I find myself needing help and have nobody to turn to. Eventually my child might take some part in it, but not yet. I am due to see my first GI surgeon soon (since my emergency surgery for obstruction / perforation / belly full of puss and septic shock years ago). Sadly, as bad as the crohn's is, the adrenal insufficiency, cardiac issues and pseudotumor cerebri are kicking my behind even worse. I don't want to burden anyone. But I'll figure it out, I always do.
@ChaiLatte13
@ChaiLatte13 2 года назад
I'm the patient and also caregiver since my husband is also chronically ill. It's really messed up our relationship over the past 10 years. :( Thank you for making this video. Some things you said definitely made me rethink the way we are going about it especially what you said about not telling your Dad things. My husband said those exact words to me. The big difference with regular sick vs chronically ill is that you know the former is going to get better eventually. Either in a few days or weeks. Chronic illness isn't necessarily going to be better. Maybe not as bad, but always kind of bad.
@mcsc370
@mcsc370 2 года назад
Your hair is so cute like that!!
@nadiabarrett5195
@nadiabarrett5195 2 года назад
I could really relate to your "person" not believing you and believing what seems mostly likely. Took a long time for my husband to get to know that often with my body, it is the thing that only happens to 5% of people. That was a lonely journey waiting for him to get there, but things improved so much when he did. and in marriage particularly, it's such a weird dynamic when choosing a course of action because, yes, it's your body and you are the one to have to ultimately go through with any treatment or lack of, but it affects your spouse like no one else and they do kind of have a say in it, too. Very strange to balance maintaining bodily autonomy and the mutual submission of marriage.
@marikotrue3488
@marikotrue3488 2 года назад
Thank you for lauding caregivers, it is such a hard job. My body has a naturally low temperature and bp. I long ago stopped trying to convince people I am sick using a thermometer as the primary evidence. I am not chronically ill, so it is not a critical situation. I once tried to donate blood, the tech's face became ashen when she checked my bp and had two others come in to check. I think my bp was barely 90/60. I joked that I might need proof of life, "crickets". Needless to say no blood donation from me, but I got a lot of free apple juice.
@janeolinger8038
@janeolinger8038 2 года назад
I would strongly suggest that anyone who is a caregiver, especially for someone with a chronic illness/situation, seek psychotherapy for themself. Having ongoing support is very important, but perhaps even more so is having someone with whom you can be really honest about the swirl of emotions triggered by this role. Every relationship can have its own mix of feelings and these can be very difficult to recognize and handle. For me, being the caregiver for my very old mother (96 this month) for the past 7+ years, has been very fraught. Although she is in Assisted Living and I don’t do any physical caregiving, I am the go-to person for everything else. My relationship with my mother has not been the most functional throughout my life and I have been very triggered by this ongoing role. A lot of therapy has helped, but I still need to work through my feelings and find an appropriate level of engagement/boundary setting. Further, as I am 72, I have my own aging concerns with which I need to cope. At times I feel completely drained by all these challenges.
@nancystewart2063
@nancystewart2063 2 года назад
I'm struggling with this right now. My sister and I are taking turns staying with her in the hospital. My strong mother, who raised 4 kids on her own, is now helpless. She tends to mumble when she thinks she's speaking clearly and I have a hard time hearing and understanding her, which frustrates her. Even with all the medication she doesn't sleep well and she wakes us up. So dealing with everything at the hospital we also have to deal with her house and such.
@mandybarnett3647
@mandybarnett3647 2 года назад
I just thought I would say I have been married for 35 years to my wonderful husband.. and he has learned over the years most of my needs. I just got my ostomy in October.. and only he could figure out how to fix the mess my skin became. Ironically today I was sick.. migraine nausea and a fever. I have I guess it’s ok to say here gas from I don’t know where! I know Zac is going to be amazing your whole life. My hubby got busy.. ordered the supplies because what they were using on me I was allergic to. My homecare nurse discharged me because I couldn’t have better than my hubby. But… he has his own pain and suffers from a car accident 3 years ago. I have a daughter with epilepsy and both my girls are being tested for Crohns. So our whole life was much different than most families. We have found a rythm years ago and symptoms are discussed and dealt with immediately. You actually become closer as a family when you just embrace the times that get nuts. You need to keep your sense of humour and oh live up the good days.. I think in some ways life is more precious when you face it together. You two will be just fine! I am a good judge of character and I think whatever happens you will be more than ok!
@jamespayette7574
@jamespayette7574 2 года назад
The green light is possessed!
@chronically_bqueenb
@chronically_bqueenb 2 года назад
You should do another segment on Patient/Caregiver communication and how important it is especIally for live in caregivers to learn how to communicate especially if their client (Like myself use text to communicate) I hate it when my caregiver would take an hour to respond to me and she won't be doing anything and I am in my room alone.
@car17yn71
@car17yn71 2 года назад
My brother and sister are my caregivers. Eventually, I learned to be honest about symptoms before they get bad.
@NorseButterfly
@NorseButterfly 2 года назад
So, we have a really unique dynamic at my house. I'm chronically ill/disabled with Ehlers-Danlos Syndrome as the main disability, and IBD as my secondary, with a slew of things in the middle. My mom WAS my caretaker until she fell a couple years ago and shattered her wrist and slammed her head on wet sand. She was diagnosed right after wrist surgery with Alzheimers. I am now her caretaker. My youngest son (26), inherited my EDS, but is now at home acting as my caretaker, and helping me with my mom when she gives me a hard time. Right now, my mom is about to be transferred from the hospital to a rehab facility, after she tried jumping off the end of our back porch earlier this week when she snuck out of the house. She broke her left hip. While she's in rehab, my son will be helping me to finish packing up my mom's house, as it's been sold, and then we will drive to Washington state get the house set up, and by then, mom should be done with rehab, where I'll fly back to TX, gather her up and fly back to Washington. Then I'll have hospice step in...and maybe have a meltdown.
@Nelle4ever
@Nelle4ever 2 года назад
@jerometsowinghuen
@jerometsowinghuen 2 года назад
It is hard to take care a patient with different/multiple issues, as a caretaker, such as making him/her comfortable by telling them with wise words.
@JAYMEN38
@JAYMEN38 2 года назад
Good day I just had my surgery today so far I’m in a lot of pain.
@donnablack6910
@donnablack6910 2 года назад
I hear you My husband is the best We've only been together 7 years but he's my hero He knows when I've got a blockage coming on and he acts fast to do what I need him to I like you are in so much pain I can not speak When I projectile vomit (quite regular I'm afraid to say) he holds my hair and I've taught him how to do gavol IM You know your husband loves you when he's willing to do fleets I tell him use the 3 H trick High-Hot-Hell of a lot Lots of Love to you and Zak also your sweet fur babies
@mariajelliffe1661
@mariajelliffe1661 2 года назад
I think both you and Zak make a wonderful couple. You both are a catch! Do you have ant non- IBD merch? I don't have IBD.....
@jenniferkelly1797
@jenniferkelly1797 Год назад
I know why you mean. I’ll get fevers from 101-103 or sometimes higher for no reason at all. I mean I’m not sick do have cold. Just fever!! It’s hard for my bf to understand because it’s always something. Autoimmune diseases suck!!
@sandraadams4940
@sandraadams4940 2 года назад
How did you deal with the leaking rectum? I have that problem and I have thrown away so many underwear. I am coping somewhat but.............
@christmastree600
@christmastree600 2 года назад
@magdalenadetoffol6406
@magdalenadetoffol6406 2 года назад
❤️💜💙💚
@mesmythamp84
@mesmythamp84 2 года назад
10 minutes before I watch this video I read this and you are talking about caregivers. Matthew 25:34-40 Then the king will say to those on his right hand come you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me. Then the righteous will answer Him saying, Lord when did we see You hungry and feed You, Or thirsty and give You drink? When did we see You a stranger and take You in or a naked and clothe You? Or when did we see You sick, or in prison, and come to You? And the King will answer and say to them, Assuredly I say to you inasmuch as you did it to one of the least of these My brethren, you did it to Me.
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