Is caregiving getting harder for Hannah? / Squirmy and Grubs
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- Опубліковано 20 жов 2024
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In this episode, we discuss how caregiving has been for Hannah, now that she’s been doing most of my care for over a year. We talk about caregiver burnout, and methods we use to avoid it.
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Shane was born with a neuromuscular disease called Spinal Muscular Atrophy that requires him to use an electric wheelchair. He is the author of several award-winning books, the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.
Hannah is a senior at Carleton College, studying sociology and anthropology. She works as a researcher for an educational consulting firm. Her future aspirations include attending law school and owning a goat sanctuary. She films and edits the “Squirmy and Grubs” vlog.
Shane and Hannah have been dating for 3 years and living together in Minneapolis for a year. Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together.
As someone who's old enough to be your mom...let me just give you one word of advice...
If there is a way to help you lift Shane easier...don't put it off.
Lifting is easy to do...until it isn't.
When I was in my early to mid 20's, I had a job lifting about 20,000lb *a day* in 20 - 50lb increments. I was in the best shape of my life. (Warehouse manager for an animal supply company.)
I never struggled to lift anything, until one day, I just moved a *tiny* bit in an awkward way, and it ended my career.
I was laid up for months with muscle spasms. It was awful. Months and months of physio therapy...and I was never able to go back to a job that I *loved.* (In my mid 20's. I never saw that coming. 😑)
Your back is a precious thing, and I don't think we realize that when we're young. I *still* have back issues, and that happened to me half my lifetime ago.
Sorry for being naggy...I just worry that if something happens to you, Hannah, it could end your swimming, and you may no longer be able to care properly for Shane.
Remember...you won't be young forever...and lifting in an awkward way like that isn't always going to be easy.
Ok....mom unsolicited advice over. 😉 Very much love to you both!
Amen. Completely agree with this. There are actually back braces and really affordable non-electronic lifts or alternative bathing options available.
I agree. I use to do caregiving. I now hurt so very badly. I'm going to a chiropractor. And most likely will end up with back surgery. It's been heck for years now
Excellent mom advice. Once the back or neck becomes involved it's a big issue.
I was thinking the same thing. I'm a caregiver and I always use a Hoyer.
So very true! I was in the best shape of my life, going to the gym 6-7 days a week. I was lifting some serious weights(for a woman) and never injured myself until one day, I twisted the wrong way picking up a small rug and down to the ground I went! I was just a few months shy of 30. It's been a rough road since.. I've never been able to return to the level of fitness that I had worked so hard to achieve. Take care of your back because it can take just one wrong movement that cause a lifetime of pain!
Me, paraplegic 24 years. My wife, was my nurse. We are married 21 years. She became disabled do to brain malfunction. Now, she does the standing jobs, me the sit down jobs. We both do the doctoring on each other as needed and as able. Does it get tiring? At times. But we do it because of love and caring. Hannah does for Shane out of love. If reversed it’d be he for she. Meanwhile, I love ‘em both. ❤️♿️❤️♿️
That's a beautiful story you shared with us, thank you for that. It's obvious that Shane and Hannah love one another and when I read negative comments from people about them it really bothers me,I can only imagine how must hurt them.
Beautiful
How in the world could he ever in ANY way at all help to take care of anyone!? Lol I'm sorry but no he would not he doesn't even lift a spoon cup or fork to feed himself, he cannot wipe his own butt. Not trying to sound mean just speaking realistically here
@@bettykirk1137 he was saying that if it was the other way around (Hannah disabled and not Shane), Shane would do the same. Not that he'd do it in his current state.. lol
Zhuria exactly thank you for clarifying that for Betty Kirk who obviously misunderstood.
As you guys are in a long term committed relationship and in it for the long haul-at least I hope so! ...I would encourage you do to anything you can to protect Hannah’s back related to lifting Shane a least a few times a day. Backs don’t hold up forever (speaking from experience)-and hopefully your relationship is forever!!!
They're living on blind faith and I think that is the only way to live. I think they're good
Invest in a lifting device. It only takes one time to really hurt your back.
katz person or really hurt Shane
Hoyer's lifts work great, and saves your back.
Yep, herniate between L4 and L5 and you will drop Shane like a bag of bricks, believe me.
Yep, a few neck and back injuries, and I literally lack the capacity to dress myself (can still walk short distances for the time being, though), and have lifelong chronic pain, and my dear, patient husband is now my caregiver. You can hurt your neck lifting a person, too. Your neck/ back are both tougher/ more fragile than you think. Take care of them.
I relate to Hannah a person in my home with me would be torture.
i think most people forget that you care for each other in "regular" relationships too. even if it's small things like getting each other drinks, cooking for each other, brushing each other's hair etc. it just feels like normal
Spot on comment.
This
What if you married someone healthy and then an accident left them disabled? Would you just leave them at that point?
//2Tyler-ann H, You are so right. Been married 48 years now, we care for each other, we help each other, and that is exactly how it is supposed to be, in any relationship, as far as we are concerned. It really is normal, for those of us who are normal. I consider Hannah and Shane normal as normal can be. He may have a few mobility problems but, normal none the less. Enjoy watching their videos, and such a sense of humor, both of them!!!!!
@@wvbonbonqueen I absolutely agree and also loved reading your comment. However, I noticed how you said "take care of each other". It made me think how Hannah is the one giving care and unfortunately Shane can't reciprocate in the same way.
You can really tell how well spinraza is working for you, Shane. Your speech has improved so much and you move your head a lot more then I remembered first seeing you. I'm so happy you're love life ❤️ Hannah is wonderful too lol
Jennifer D Also in the video where Hanna pulls the hat/scarf off Shane’s head and he hold his head up. Amazing!!!
@@suzanneward5131 that's right! He wasnt able to do that not too long ago.
@Glinda Briggs I reject you negativity. Thanks for calling.
@Glinda Briggs lol the fact you refuse to let good into your heart and mind is a shame. Brainwashed? How about a loving heart? IF they were frauds then oh well it doesn't effect my life. And I sleep great at night thanks for asking. I will always know in my heart that I'm a better person for trying to be open and trusting instead of assuming the worst in people. Shame on THEM if they are trying to scam others. But I do think it's nice how much my opinion means to you. You're sweet ♥️
You're sickly sweet naive. I'm not sure if it's a scam but that kind of leap of faith optimism is going to get you in a bad situation.
8:59 “Caregiver burnout” that you’re describing is also called compassion fatigue. Being an animal rescuer I started suffering from this several years after I started rescuing. (Well, when I _realized_ what was going on, actually.) Seeing so many abused, neglected, and homeless animals who were suffering so badly really started turning me into an angry, bitter person inside. You *MUST* take care of yourself, sweet Hannah. For me, that meant going to a hotel 2 days a month, with *only* my dog (not even my husband), and just focusing on myself, with lots of R&R.
Compassion fatigue is real, and I encourage Hannah to look it up so she (and Shane) can recognize the early physical, emotional, and psychological symptoms, before it gets completely overwhelming. Btw, the “caregiving” you described is still actual caregiving (not in air quotes, lol), and you can still suffer from compassion fatigue “just” performing those functions. Therefore, I urge you both not to dismiss it.
Please don’t take this wrong, but when you (Hannah) said that normally you’re a person who needs a lot of alone time (which also describes me), but you don’t need that because you enjoy Shane’s company so much, that was a *big* red flag for someone who *will* eventually suffer from compassion fatigue. PLEASE don’t sacrifice your alone time for _any_ relationship / caregiving.
I hope a lot of people read your message. All of it's so true.
I hope you win the lottery to help ease the burden of caring for those poor precious animals. I know it wouldn't ease the distress and heartbreak you feel watching them suffer, but just to get a hold of more resources/facilities and more rescuers and care givers.
Sorry, I know it's a weird comment to make, kind of dumb, but I can't bear animals suffering and I think I would have a breakdown every hour of the day doing what you do. I detest that I'm pissweak like that.
I've never heard of "Compassion fatigue" but it certainly makes sense. I know when I was working caring for the aged I'd get more emotionally exhausted than physically. But that was different from spending time with my partner because I don't feel I'm care giving...we're just hanging out. I like alone time, but MY space just seems to make more sense with him in it.
I agree with this comment so much. A lot of the time people associate burnout with hating what you do, but that isn't it at all. You could love a person or your job or what have you more than anything and still feel compassion fatigue. Everyone needs a break, even from things they love. There's a huge stigma around the idea of self-care and breaks but it's necessary to practice those things if you want to maintain your level of commitment and enthusiasm towards what you do.
Rebecca James I loved your comment, especially at the end....
“I like alone time, but my space just seems to make more sense with him in it.”
THAT IS EPIC AWESOME SAUCE! That comment resonates with me, and my relationship with Jesus. May I use it?
ILive2Rescue I suffered with rescue burnout physically, emotionally, and financially!
I took on more and more until I had my stroke.
Now I only rescue elderly indoor cats, and any stray that happens to show up...
"My idea of alone time involves having you near me." Saaaame (with my bf). I don't get tired of him but I get tired of other people. It's strange, but wonderful.
Same ❤❤❤
Gina Victoria Yeah that is nice
Same here.
I really appreciate you pointing out how inviting a third party into your home can be intrusive and a strain on relationships/mental health in a different way than doing the caregiving yourself. People don't seem to get that! I think you have a very healthy perspective, recognizing what works for you now, and what might work better in the future as circumstances change. :)
Kristine Napper This is so true. Being disabled, I have a friend who works as my caregiver now so I can deal with them fine. Right after a major surgery though the caregivers that came were complete strangers who felt they needed to entertain me. The stress of dealing with strangers in my home was worse than healing from major spinal cord surgery. I couldn’t relax in my own home.
Kristine Napper this is true! Sadly I don’t have a choice with my boyfriend (quadriplegic) who needs to have 24 hr carers and have 6 carers at the moment. We do find our own ways to work around them and do stuff with just us but I can’t do everything for him by myself, I would love to if I could.
@@lynnrenee8369 Or you feel that you need to entertain them!
I’m a social worker who guides people in their own home. Some of the people I help, i’ve been around for about five years.
I understand why people rather don’t have someone like me wandering around their house though. To tell you the truth; when I started working with people in their own home, I also found it a bit strange to begin with! Even now I still found it a bit strange sometimes. I’m very aware that I’m in their house, no matter how long They know me! I think you should Only take a caregiver or social worker as you really need or want them. As long as you are doing fine and are happy with the way things go, why change? Being happy with your own choice should be the most important thing! Not What other people would want for you (although They often mean Well)...
As a carer I can empathise with this. For the family that I work with at the minute they have become quite use to me and are able to relax with me around, as if I were a part of the family. I am friends with them more than I am their worker, however this does not impact the way I care for their daughter. I think it is nicer for her and her siblings to see me as “Big Sister Laura” not as some stranger.
The reason looking after Shane isn't a chore is because you love each other and you care for each other deeply. It's beautiful to see. 💕💕
“My alone time is when you’re near me” that’s love and I hope I find that again ❤️
Y'all are awesome! Your relationship shines bright as an example to others! It bugs me that people always want to know if Hannah gets tired of you, Shane. People act like the caregiving and the relationship are two different things. While I understand that you, Hannah, are not "required" to do the tasks involved with Shane's daily needs... You two are in a relationship with one another. This means that the caregiving comes naturally through your love for each other. Your love provides the reason, comfort, and desire for the tasks needed. They are not burdens or a job, but simply things that you do for someone you love. My wife and my relationship is very similar to yours. We've been together for 9 yrs and married for 8, we never get tired of the presence of each other. When I think of peace and relaxation, it always involves my wife because she is my comfort and peace. We married each other to be together always. We have had days of "girls/boys night out" but they are few and far between. Nothing beats the time my wife and I spend with each other. We are Blessed! May God continue to bless the two of you!! Prayers!
Hannah & Shane please do consider an alternative to bending forward and down into the tub. The bathroom and kitchen are the 2 rooms that have the highest percentage of in home injuries simply because we tend to be barefoot and there is water/shampoos/soaps and such to make the floor slippery. You could slip and fall into the tub/shower and injury more than your back, like shoulders, arms and your neck. Just consider making a change sooner rather than later.
I'm so happy that you've found a rhythm in your relationship that makes the caregiving a natural part of it. You seem well matched in lifestyle and humor. As always sending you both love from Kansas!
Y'all are looking GREAT! Anyone else think it would be funny to see a Shane does Hannah's makeup voiceover video? It would be hilarious to see Hannah talking with Shanes voice 🤣
Yes and also the other way around 😂
That would be great!
I WOULD LOVE THAT!!!
Omg that would be the best!!!
Yup I second this
I adore the way you look at Shane 💝 The way you beam at him, it's so beautiful. It's so apparent you two are in love 😍
Stephani Keith yes, Hannah looks at Shane with love and so much respect!
itzsykez jealously isn’t attractive.
itzsykez i’m not into men like Shane. ew
I noticed the same...God bless you, guys!=)
Yesss. Relationship goals. Lately I’ve been like if I don’t look at him like this I don’t want him!!lol
Caregiver burnout,..is very real! Yes! I cared for My Father for 5 years,...NO problems No worries,..He was a Joy! We Laughed and Learned together!
Now,..Throw in Also caring for My Mother in Law for a Year. YES,..I then had burn out. I use to go into My walk in closet,..and seriously just Breathe. Sometimes cry. Lol
My Dad and I were Great together, My Mother in Law wanted to micro manage Me. Bless Her Heart.
Robin Busse so basically it really depends on who you caring for. That is true
I wanna give you a hug it's hard 😭
@@donnasauer2699 I agree
I think care giving is made much harder when the person you are caring for is obstinate or has medical issues that require training to do. I cared for both my parents - my Mom was harder than my Dad because she was difficult in regards to behaviour. My Dad was only difficult in regards to medical stuff. With that said most days the care giving goes un-noticed as it is just part of your day.
Glad you guys are talking about it - it helps others to know!
My husband is a wounded warrior and I am his full time caregiver. He doesn't require the level of care Shane does, but i do have to do a lot. We have been together 24/7 since 2012, when his seizures began. I think it speaks volumes to your relationship when you are together that much and still together. Kudos to you guys, love watching you guys enjoy life!❤
As an introvert, I totally understand your viewpoint Hannah. How wonderful that you have each other and seem in sync!
You should get an electric patient lift with a sling. I used them all the time in my precious job and it saved my back. Can everyone like this so it gets attention ??!!! 🙌🏽🙌🏽
They are super expensive x
Sarah I've seen them as cheap as $95 and as expensive as $3000 with a lot of different costs in between. They can be as affordable as your budget requires.
Sarah Doesn’t ge have money
Yes.
You two are the absolute sweetest, and it's so nice to see such a genuine loving couple on youtube.
It's refreshing to think that you are just as loving and caring off screen as you are on!
I am 28, I have a 4 year old who is on an IV (CVL) 18 hours a day and a feeding tube 24/7. This means he needs a primary caregiver as well, as he cant really go to school or anything and has lots of medical needs as well. We tried having nurses initially but found they cause way more error than benefit. For that purpose I am also his primary care giver, as well as mom and homeschool teacher. Its mentally draining at times but love can get you a long way. Seeing someone struggle and strive for life each day, and then exceed expectations is a reward in itself. Just remember to keep your glass half full, but it seems like you guys have a great routine between you.
Hehehe the coffee has been warm 😂😂😂😂. The nose picking . Oh Shane you are too much 😂😂😂Shane I must ask you just said you can feed yourself. Can you bring the food up to your mouth? How do you work that out when no one is there to help out. Also I must say you look more strong , your head is more straight seems like you can hold it up way better now . How do you think injections have help you in the past half year or so ? You both are doing great . May your love continue to blossom .
NoGutsAllGlory That sounds really tough, I’m so sorry. I hope it gets easier for you and your little boy x
I'm 3months pregnant and experiencing all day sickness...forget morning sickness. & watching you too helps me feel better!!! Laughter & Love is the BEST medicine!!😂💕 thanku for your Inspirational, Funny Loving, Historical videos!!!
Shane-I can really see your improved head control in this video! WOO HOO for Spinraza!
When you were describing "alone time", I was smiling... that is my husband and I exactly. We have been together since 1998.
"I'm here too" - "You're not involved " 🤣 Shane's sense of humour, gotta love it.
That was my favourite bit. I love their sarcasm and 'horridness' to each other.
I definitely think you guys are down playing and minimizing Hannah's care taker role. I love the relationship and the love that you guys have for each other. You don't need to defend the choices you make in your relationship. For example, Hannah as the main care giver case and point. Again, I don't mean this post (comment) to be mean. I wish I had a relationship as loving, selfless, and healthy as yours. I just meant that you guys don't have to minimize Hannah's role as care giver to justify your choices in your relationship and your relationship as a whole. You both compliment each other well and help one another be a better person.
I agree.
She is doing so much more than she admits to.
She's absolutely downplaying just how great of a job she does.
Exactly!!!!
I love how healthy, open and caring you both are in your relationship, it’s truly something to strive for!! I’m personally a lot like Hanna when it comes to being an introvert, I also need my alone time to recharge and I never thought that what you have could be something I could have (does that sound right?). As in you don’t feel any different If Shane is there and that shows how comfortable you are with each other, when dude, THAT’S THE GOAL!! To find someone I actually want to be with even when I don’t want to see people, when I isolate myself etc., I never thought about that, honestly it’s amazing!!
TBH this is the best ad for Hello Fresh that I've seen
Agreed, I love that Hello Fresh sponsored this and the kiddie was too cute! Wish they had recipes that work with my diet restrictions because the recipes look yum.
I was my mothers caregiver for a little over 5-6 years until her passing this Feb. I experienced caregiver burnout during the time she got septic shock and was in the hospital for 5-6 months back 2016. It lead to me getting diagnosed with MDD (major depressive disorder) with anxiety. Care-giving didn't give me depression, let me say that, I had undiagnosed depression since I was around 10ish, it just lead to me finally getting help I thought I didn't deserve. My burnout was both a curse, and a blessing for that reason (depression diagnosis). Caregiving did give me anxiety which I still battle to this day.
@ Josey so sorry sis it does impair one and is delibitating to your soul when you lose a mom or any family member. I'm so sorry 💔 😢 for your loss and really hope you get well super fast dear ❤️ i never knew that diagnosis existed either
꧁Josey꧂ I hope you're getting help for your anxiety... you are absolutely worthy of support and treatment and whatever else it takes to help you feel truly healthy.
I know only too well the sheer hell of MDD and anxiety 💖 You're not alone. 💕💕
My husband and I are the same way. I use to have to be alone and no one bug me. But with him I enjoy him. I have for 13 years. He's my buddy, bestie, favorite pain in my butt, he's just my everything. We don't like other people lol. We just like to be alone and do our thing.
❤❤
Desiree Spencer that’s awesome For you but don’t think I could be like that. I need to be at time solitary from people including my girlfriend. I find it healthy. But the beauty that of life is each couple/person is unique.
@@analogkid4957 we spent many years apart as a military family. I even had my son alone while my husband was overseas . So now we just like to be together. His friends find it weird. Alot of people shut us out because we are not ones that go out and do things with out the other. Which works for us. Has for a very long time. He's actually away on business for the first time in 5 years we have been apart. We both are going crazy.
If it's working for you two and there is no burn out, or issues meeting care needs, keep doing what you are doing. It sounds like you are open to the reality that you might sometimes need help in the future, which is all that is important. You guys know your needs better than anyone else.
I have to agree with Hannah regarding nose blowing^^ I need the inside (of the nose) to be very clean which can get a bit aggressive when it comes to removing all of the debris. Well, my main goal is to be able to breathe and breathe well^^
I just love watching you both! And I LOVE the way Hannah looks at you, it’s clearly true love! So many couples could learn from you both. Nothing to do with someone’s ability or inability, but just having genuine love and caring for your significant other. Thanks for sharing your life and reminding us all what true love looks like!
Hannah you really do need to look after your back. I'm 30 with a slipped disc which I sustained doing care. It gives me Sciatica flare ups which can leave me pretty crippled and struggling to walk and drive for days-weeks. And it's the smallest lift and lean/move that sets it off. If you can get any solutions to help you, definitely go for them! Because as a 30yr old mum of 2, I have serious concerns how well my body is going to cope as I age. And I wouldn't wish that on anyone. Love you guys xxx
I've also been in the field n have the same kind of pain you've had....i agree with you...
My name is Kelly Robert Lyon I was born with Cerebral Palsy thank you guys for sharing your life through your UA-cam videos and if you guys are ever in North Carolina I would like to meet you someday
Hi, I live in Burlington N.C.!
Pilot Mountain NC😁
@Jayce Ollie Funny but at the same time RUDE!
I have Cerebral Palsy too. I just did a project on it for my English class
Sarah Waltz I would love to see your English class project on Cerebral Palsy!
I do not have CP, and I do not live in North Carolina. I have watched several nomad channels drive through North Carolina, and I can say that it’s BEAUTIFUL!
God bless you, Sarah!
I absolutely just love the two of you! I, myself, am disabled, too, and would give just about anything to spend the day with the two of you. Life is often full of cruelty, society doesn't know how to react to People Like Us and the people who stare? Well, we are just part of the "unknown" in their world.
You are both the epitome of love conquers all. 🤗 Hugs from Bali.
I cared for my 104
year old dad for years before he died. Because we had always been close, the first several years weren't difficult. The last year, I was so burnt out. I began to resent giving up my entire life. Family refused to give me a break even for a few hours. My father refused to go to a senior day care center for even a few hours once a month. He refused in-home care for a few hours once a month. I explained that I needed to take care of myself once a month. I didn't ask for more than that, but he didn't seem to care. I wish so much that I could say that I was a fantastic caregiver for him in his last 6 months of life, but I can't. I'm still dealing with the fact that I wasn't too kind to him during his last 3 months in particular. 😢
I'm beginning to realize that, while I have regrets, I needed a break now and then. I didn't have supportive family at all. As they flew and cruised their ways to far-flung vacations several times each year, they wouldn't help me and Dad for just one afternoon or evening even just once a year. This didn't escape my father's notice! He often felt that my siblings were ashamed of him somehow. No matter how much you love someone, if you don't get any time at all for yourself for years on end, you will begin to feel resentment and you will burn out.
I still haven't forgiven myself for my attitude and words and actions in those last months, but I am trying.
The point? Please have plans in place to make time for yourself as a caregiver. Make certain that the person for whom you care understands that you have needs, too, and it doesn't mean that you don't love them. In fact, you are making sure that you remain the best, most loving caregiver that you can be.
I'm so happy that you two found each other and that you are very much in love! True, unconditional love is extremely difficult to find. Most of all, I admire your maturity and ability to communicate with each other. After being a subscriber for about 6 months now, I truly and honestly don't notice Shane's disability. I see a successful and loving couple that has what it takes to go the distance. Your shared sense of humor is wonderful! Intimacy - the true, emotional kind - is what you two have in abundance.
One more piece of advice: The person for whom you care also needs a break - from the caregiver! Allow them time for themselves, too.
May God bless you always!
Animal Lover I hope you can find some peace with your self...caregiving can be so hard on a person and on the relationship. I care for my dad now and he has dementia. It’s like taking care of an unruly, wrinkled teenager or even a toddler at times. I’m constantly frustrated at my attitude and keep trying to telling myself to try and enjoy our last time together. Thanks for your post...I can relate.
@@tfntexas Thank you so much for your kind words. I don't feel so alone with my frustration. I cared for my mom in the last 3 months of her life; she had terminal dementia. She'd run around yelling that she was late for work and nearly escaped from the house a few times. It does feel like you've got a wrinkly toddler! I completely understand.
You have a lot on your plate. An elderly man, if agitated while disoriented, can be a dangerous situation. Despite his age, he is stronger than you and more difficult to settle down.
I'm praying for both of you to always find peace with each other and for your love to see you through this time.
Thank you again for your response. It came on a day when I was feeling down again and lifted me up. God bless you!❤
2manybuks 2littletime having family like that is the most testing. The worst is when they profess their undying love, but never do a thing that requires effort or sacrifice.
The being able to have kids is something I will not believe. I mean naturally. No way. He’s so fragile. She’s twice his size . He’d break
This is by far my favorite video since you guys talked about what many people are curious about which is the caregiving part of your relationship and how it affects both of you. You guys made a really good point on how it doesn't feel exhausting especially since you both truly love and enjoy each other's company that the "caregiving" part of the relationship is just the norm. Thank you for sharing your life with us!
Definitely get the bath lift. It’s a game changer! I am a home nurse for a child with SMA type 1, they got a surfer bath lift (it’s for pediatrics, but the company makes an adult lift). For a little while only her dad and I could get her out of a regular bathtub. Weirdly though when we were on vacation we didn’t have the lift and the tub was like 3 feet deep! That was actually easier because I’d get get in the tub with her, pick her up, then sit on the side of the tub and swing my legs to the floor before standing.
Also something to think about if you’re coming to a point where you’re looking at hiring help, you can get someone to come just like 2 hours a day (or however long you need) to do his hygiene routine and then leave, you don’t have to have someone come all day. I used to do visits where I’d do the guy’s stretching, toileting, shower and AM routine then go home. It was about a 3 hour shift.
Care giving is part of the intimacy you guys share in your relationship ❤️
been sort of tied up and not keeping up with vlogs as much as I usually do and was amazed to tune into this one and see how fantastic it is to see Shane holding his head up and nod just leaning it back all the time. Now my two cents as one caregiver to a close family member to another, its nearly impossible to play both the roles of the person in the relationship and the person that does all the caregiving. In my case is mother-daughter but I also had a front row seat to my sister going from wife to caregiver. In the long run you cannot do both and do them both well, And when teh other person's life depends on you slowly but surely the personal relationship suffers as the caregiver is making sure everything is 100%.
Caregiving is a wonderful thing in a relationship, and that you can be there are a caregiver too but for the sake of a healthy relationship you really can't be the full time caregiver as sooner or later you end up having to block off what would be the emotional reaction so that you can deliver the care. Caregivers hit those days where its just been a rat race of care to perform, appointments to get to, medication to go get and of course you know the list the best and come bed time, when the love of your life wants some romantic time and you find yourself just wanting some sleep knowing the early hour the alarm will go off at.
i have hit that wall a few times with my daughter, where she just wanting to do kid stuff with mom and mom just wanted to crawl in bed and grab a couple hours sleep before it was time to change out IV bags again. And my sister told me that things did get to the point at one time where my brother in law was complaining about why she would not go watch a movie and cuddle on the couch with him and how he felt like she was not giving him much attention in a husband and wife way and all she could think of was ":I have been with you for 20 hours straight today, doesn't that count for something?" That was when she realized that they did need some caregiving help so that she could have time that was just the two of them and the care was done by someone else and that they needed that caregiver/spouse relationship to go away at least for part of the day so that they could just be spouses. I had to do the same with my daughter, and break up the caregiving and let someone else do it as I was not the only one in the world that could do that but I was the only one in the world that could be "mommy".
If you find something you have to do as a caregiver that is difficult now, such as lifting, know that as you get older it will get more difficult and if you have part time help they may not want or can't to do it so that this is probably a good time to start investigating what might be equipment to add that would make lifting something that did not have to be done by a person. Its nice to imagine that it could be a case of the "more you do it the more you will be able to" but usually that is not the case and you also have to have a long range view ion these as equipment is often hard to come by. Since you have talked about one day having children imagine the lifting you are doing now having to do while pregnant. It probably would be too late to consider it once you dio get pregnant so starting to think about it now before its a real issues is always a good idea.
I’m a former caregiver. I ignored the PTs and lifted however I wanted. Tweaked my back one day and have had issues ever since, including now with my 1 year old son. Do whatever you need to do to life safely!
Folks, as my wife's dialysis caregiver, burnout is serious and needs to be recognized. Hannah, you need to force yourself to take a week or 2 to just decompress, especially the first year so you don't both start to overlook things and unintentionally slack off. Yes it's time for both of you to refresh a bit. As time goes on you will recognize when the mental batteries need flattened and recharged, yes it's hard to separate and have confidence in the relief caregiver.
Oh my goshhhh! Evelyn’s intro was so cute!
Caregiving can also include hiring someone to only come in for specific tasks- like bathing.
Awww ....Shane , “it’s a lot”....Hannah , “no it’s ok”.....what “TRUE LOVE” is All About!!...talking makes BEST FRIENDS...that is the BEST KIND OF LOVE!! This is one of “your” Best yet videos.....loved it sooooo much!! Thank you for letting us into “Your” lives!!
Don’t be afraid to hire someone if you have to though. My dad waited way too long and it’s ruined our family unit
You guys are freaking great. Shane, you’re hilarious and a serious inspiration for me to stay positive. Hannah you are the exact kind of person that I want to be. Much love to both of y’all!
I agree with the comment basically saying Hannah won’t be young and in shape forever. One wrong move and you can eff up your back muscles forever. Not to dissuade you from what you’re already doing but a plan for the future when Hannah will no longer be able to carry Shane is hopefully being discussed. You seem invincible when you’ve just graduated from college but blink and 30 will be there before you know it. I’m 31 and I can feel my body changing.
Amelie Smith TRULY it happened to me 70% + People in the world get back problems and no way to know this in advance for most people. But Hannah has this advanced notice
Yall are such an amazing couple!! You can tell by your laughter and your smiling that you guys are genuinely happy and love each other and that is what life is all about. Finding your best friend to spend the rest of your life with and enjoying each others company. I love yalls videos. I can always see a glow in hannah when she smiles at you. Yall are amazing! Keep loving each other the way you do and you will have great fulfillment in life.
I love how transparent you guys are, and how open you are about EVERYTHING! I feel like every video we ( your fans) learn more about you guys, and honestly feel like you're my great friends! Keep being awesome👍
I love the way you talk about your relationship. It’s very clear how much you care for each other and that Hannah’s “caregiving” is just a part of your daily life. The difference, I think, is the intimacy that’s so intertwined within caregiving. You both are such wonderful people and it makes me happy to see you guys so blissfully in love
I work with individuals that require physics assistance or utilize a wheelchair. I would definitely invest in a shower chair that is higher up that way you don’t hurt your back. You guys are awesome!
The banter you share while completing your daily tasks are key to a long loving relationship. Love you guys. Watching you helps me realize that my attitude while facing daily struggles should be positive and I should not feel sorry for myself. Thanks!
Care giving is a hard job I did it for many years when I was Hannah's age. My bf became disabled from a work accident and seven surgeries later he still wasn't better from his fall. I held a full time job as a ceramic tile installer and worked a forty hour week then home to caregive. My bf could get around in his wheelchair and drive so he wasn't totally home bound. I think the hardest part was watching him take narcotic pain killers supplemented by liquor and cannabis for his pain relief. Watching someone in constant pain is awful and he even asked me to kill him to put him out of misery. This is how bad it could get for anyone. My personal opinion on care taking is it's exhausting and mentally draining. I'm glad I was 23 years of age at the time so I had plenty of energy. Doing it now would be hard but we all push thru things in our lives regardless of circumstances.
If you love someone you stay and work thru anything that's going on. That's what real love is.
That's how I feel about my daughter sometimes I just wanna give up but my love for her helps me to stay and just breathe through it😊
i took care of my mom for a very long time both emotionally then physically. She thanked me but I told her it was my honor. I would do it all over again but now she is with Jesus and free of pain finally.
Caregiving is done best when you love and care for each other. You have an awesome relationship.
My niece's name is also Evelyn! I had to pause the video I laughed so hard at the tie thing🤣
Fellow introvert here! Having someone who is part of your alone time, that doesn't burn you out is #introvertgoals.
I'm using hashtags now. Someone help!
I don't want this to be taken the wrong way, but when you were talking about caregiving and how it's just part of your day, it reminded me a lot of parenthood. As a mom, most of what I do in a day is a form of "caregiving" for my kids... doing things for them that they can't do for themselves. And I do it without a second thought; because that's what you do when you love someone ♥️ Obviously romantic relationships are slightly different, but I think the intent behind the care is pretty similar.
Hannah, listen to the comment about lifting! Caregiving 1 year and in that year I have seen nearly every one of my co-workers injured. Even only working 4 days in a row and having help I messed up my neck probably forever. You are doing this every day with no breaks or days off from lifting. I feel like this relationship is a lot of giving from your side. Even the best of caregivers need days off. Obviously its convenient for him having you there but take care of yourself too.
Hannah you have a natural gift at giving and Shane has an amazing sense of humour and his honestly with his emotions
!Unsolicited Advice Alert!
I'm a professional caregiver and highly recommend staying in shape for lifting! A strong core will hopefully keep Hannah from getting minor tweaks and more serious injuries, even if it just seems awkward now and not too difficult. Those awkward angles can be gnarly over time for sure and I'd hate to see Hannah pull a muscle and be less than completely capable of lifting Shane or trying to power through something minor and making it worse. I'm not always lifting people, but I like to incorporate core/back/shoulder exercises in my daily for when I am. :) (edited to add: plenty of effective exercises are available to do from home, I'm not necessarily saying anyone needs a gym membership)
P.S. You guys are amazing, I love your videos, not sure if I've said so yet! That chemistry.
I understand you two. I have SMA and my husband had an SCI. Before he died, he was bed bound. I was able to help him during the day and get everything he needed. I never got tired of care-giving because I loved him. I would do anything to have him back and do the care-giving for the rest of my life. Don't let anyone tell you how to feel about it.
Please invest in a lifting device, once u hurt your back it is never the same
Hannah, I'm surprised you are an introvert - me, too. Love the real-ness of your videos and the "no big deal" attitude. This is how it should be. Both of you crack me up!! I know you get freaked out being recognized in public, but if I ever see you I will at least say hi! Best of luck apartment hunting!
“In the REAL version of the little mermaid” 😂 this tickled me so much! Great vid :)
You two make me smile. I can really tell you love each other very much. When you really love someone, you don’t mind helping them with whatever they need. Many blessings on your future together!
You both have the right attitude about it; to love someone is to care for them, regardless of the type or amount 💖 Although I'm not in the same situation as you two, I am a caregiver for a few family members/partner over the past several years, and I find it challenging but so rewarding, knowing that I'm helping my loved ones be happier and healthier. Which is the normal family member/partner role IMO, its just a different type of care, but everyone needs different types of care anyway so.... I never wish I didn't have to do it, I'm just thankful that I am able to give them the help they need when they need it 💕
these are the perfect videos to watch when you think of yourself as ugly and that you'll never find a lover. Very inspiring these two are.
Every situation is different. Do some people get burned out from being the primary caregiver, even if they love the person they are caring for? Yes. But that doesn't mean everyone will.
I have watched a lot of UA-cam videos in my day, and I have to say these Squirmy and Grubs videos are the ones that I consistently laugh out loud to. Love you guys! :)
Your conversation about alone time is just like me and my husband too! Even before we got married, we felt as refreshed being 'alone together' as we had having alone time when we were single. You all are so sweet and have found a great dynamic that works for you!
I enjoyed watching Shane and Hannah very inspirational with fun and talking their business life, don't matter if good or bad as long they honestly express their mutual relationship and so heartfelt kind of touching feeling for both of them, very sincere and realistic.
Yes you need to be careful with your back!
I’m a 59 year old and have a bad back it’s awful, it effects my moods and everything I do. Figure out another way to get him into the bath, NOW! Prevent it from happening!
Thank you for talking about caregiver burnout. It’s can be a big issue. I just left my caregiving position because of it. Your relationship is really special and it is amazing to see how it works for you guys. Looking forward to year 2 review 😊
All of us would be lucky to find love as true as yours. Stay rad!
Guys, I love what your doing. My mum is a Servicer worker and she comes home and we watch your videos, we laughed so hard at the end about the itchy nose 😂 you guys make the world a better place I love how you always make a joke of the small things. Keep up the great work - much love
Hellofresh is a hella ripoff. I think basically anyone can make delicious pasta for pennies on the dollar, and the measuring our portions thing give me a break. So basically those kits cost $80 for 3 meals with no left overs. In reality this isn’t for people that actually spend time at home because you’ll still need to go grocery shopping, people that are rarely home, cheaper to just order takeout at an upscale place. I guarantee you people get hellofresh once and never reorder.
Watching Shane and Evelyn interacting makes my heart happy 😊
One slightly wrong move and you could stuff your back up. It can cause permanent damage. Be careful both of you. x
It makes a big difference if you’re caring for a person you love.
You two are great together, don’t ever change. ♥️
You two are made for each other.
Shane keeps it so light, keeps everyone laughing, and is so positive, which lightens the (already not very heavy) load, I'm sure. He's super emotionally mature so he's not expecting Hannah to process his feelings or issues for him, and Hannah is the same way. When it's like that, everything is just different :)
Like everyone else said, you should take care of the shower situation sooner than later. Maybe when you get your next home it will be more accessible.
Do something to keep your core strengthened.
Thanks for sharing your life.
I love you two. And now my Fiance is also hooked. Shane i think your such a doll. And my Fiance and I both feel Hannah is an angel. Not just because of her huge giving heart. But her genuine smile,and good natured spirit. I hope the love&friendship you both share lasts forever.
Love her AC/DC t-shirt ❤️ "it's milk can I drink it" lol
i just wanted to say thank you for sharing so much of your lives with us, random strangers. i enjoy your videos so much and y’all are just such nice, good people they’re such a treat. im a hopeless romantic so the devotion and love y’all have is truly admirable. thanks for being y’all!
$6.99 per serving?!?! That's expensive for such a cheap ingredients meal.
Chicken Nugget well its a buisness.
If you eat chicken nuggets, I suppose it seems to be
7 per serving is expensive coming from a person who cooks every single day.
Chicken Nugget we have the same user name
Lol
Well it's not just the ingredients...they take out most of the work...figure out what you would pay if they cooked it for you too.
Caregiving is a normal part of a loving relationship, you two are genuinely in love, lots of people have never known what that's like. A healthy relationship, which is what you have , is a foreign concept sadly to so many.
May Eye suggest a hoyer lift, every bit of help is needed when caring for someone.
Good suggestion. Even if they just tuck it away till they need it.....wouldn't be a bad idea to have it and know how to use it.
@@beeonkuhh8597 it makes transfering so much easier & helps prevent injuries for both the caregiver & the client (patient/family member).
It is so cool for Shane to check in how Hanna is doing with their everyday life.
I have worked in homecare, and also helped people who have partner or family living with them. We didn't stayed there for long like while they wached tv, just helped with food/medicines/shower/getting on or out of bed. Having that kind of help doesn't mean that their parner loves them less or don't want spend time with them. It can also been seen as a possibility for the disabilied to have some independency in the relationship.
Like I said, it is lovely to see you are talking about these things!
Yes in the original version of Hansel and Gretel, the witch keeps Hansel in a cage and fed him to fatten him up before she ate him.
Love your sense of humour. Care giving is something when done from the heart that no one knows about unless they are doing it. Everything is done in a specific way, routine so as to make the person not feel inadequate but in control. No one cares for the person better than the full time care giver with heart. Love your videos, very inspirational. Take care, Joanne, from Wauchope, n.s.w. Australia. Xxxxx
'hannah you're not involved'...shane you're priceless lol
Thank you both for being who you are. I am just so enamored with you guys and you help me so much. I have a couple of chronic pain conditions and when I’m watching your vids, the pain goes away. I laugh and smile and it is such a sweet reprieve... so thanks for the magic and the pain relief!
Hi guys, I wanted to share with you that coincidentally I have been a live-in caregiver a wonderful woman who also has Muscular Dystrophy. As you can imagine, her needs aren't exactly the same as yours, but we face a different challenge; unfortunately I also have chronic health issues, (we are finally suspecting that it's Ehlers-Danlos) and my body is just wearing out. I have an awesome partner who helps with the more painful stuff for me, but it seems I will likely need a caregiver myself in the near future. Unfortunately, we are no longer a good inter-abled match. It's heartbreaking loving someone and realizing that you can't do the things they need. She's not even super needy, and I feel so guilty over it. We're currently trying to sort out new housing and assistance for me, but we have no family out here except my partner and daughter. There are not enough spoons in the day! ^_^
Hey friend! I have Ehlers-Danlos (and so do my sisters, my mom, my aunt, and one cousin) and if you ever need to talk or have questions or anything, feel free to reach out :)
Every loving relationship should be and generally is, filled with caring and nurturing one another. Helping each other do things is polite and what most people do. This is caregiving🥰
I love to see you guys together. Keep the love flowing
As an introvert, I have always needed my alone time. One of the ways I knew my husband was "the one" was because he wasn't someone I needed time away from. There's only a handful of people in my life who are like that. As an introvert, it's nice to have. :) Cool video, guys.