What if it was YOU?

Two words in life are very dangerous. "NEVER" and "ALWAYS". You can not with 100% certainty know that you will NEVER do anything. You know what you want to do. You know what you plan to do. But you do not know what you will do faced with a situation where YOU cannot under any circumstance provide his care any longer. Because it is always easy to say what you would do - when you haven't been in the position to actually do it.

It is NOT selfish for a person to choose a care facility to provide 24/7 care for their loved one. If you have never had to make that choice then how on earth can you possibly know what that feels like? How do you know it is selfish? How do you know what position people are in when they make that choice?

Better yet, I have a great idea!! Why don't you come spend a few hours helping my 300lb, immobile FIL out of bed with no assistance and dead weight, with a smile on your face and love in your heart. And oh yeah, by the way...just a little tidbit...you didn't grow up with him abusing you physically, emotionally, mentally, and verbally your entire childhood - so it's probably not that big of a deal to you to continue to take the abuse he likes to heap on his caregivers - you can smile and take that right? And clean up his "accidents"? And listen to the lies he tells other people about you?

Do unto others? Selfish?

Not every situation is like yours and I really wish people would understand that not all caregiving situations are created equally.

You will never do it. That's great for you. I hope you get that wish. And never have to make the decision to move your DH to a nursing home because you physically can't take care of him yourself. Because YOUR body has worn out from providing his care. Because the caregiver illness and mortality statistics will take your breath away. And there is NO shame in needing help. And no trophy for martyrdom.

I see that Reba says she has signed off from the forum now, angry at how she was treated by posters here. That’s unfortunate as I saw several reach out in compassion to her situation. I fully admit my defensiveness to my mother’s situation and why she lived in a NH. It says a lot to me that Reba chose to use, in what she says was her final reply, the word “vegetable” That’s a completely heartless, cruel term. What if it was YOU being callously referred to that way? Despite my mother’s fully broken body, her mind was fully intact, such a cruel irony. Somehow, she laughed at my jokes during every visit. She loved visits from all, and interacted as best she could. Vegetable? That’s not for people, just produce

Reba does not accept the advice that has been given to her to save her health and her life. She was looking for support for her decision to risk her own life. Maybe when she is unable to care for her husband anymore she will remember some of what was said to her here . There have been others like her who assume the forum is here to support their “unselfishness” , and are truly surprised when are advised to step back and let professionals care for LO . It is sad really , she may very well be one of them that dies before the person she is taking care of . I feel sorry for her son .

If it was me , I hope that no one like Reba puts a guilt trip or tells my spouse or children that they are being selfish if I need a nursing home.

It was no longer possible for me and my sisters to care for both 94 year old parents in their home. I wish my father didn’t have to go to a nursing home but he did. I really wish he would have died before this had to happen but I don’t feel guilty about this decision. He is getting better care there. We all do what we are able. You want to handle care at home , good on you. But please refrain from judging others.,

Dude seriously lifting your 200 pound husband is going to cause you a serious back injury and a lot of debilitating pain down the road. Working full time and carrying full time sounds like a nightmare. You just can't do both for very long. Please consider a facility for your husband.

"If It was me" - I plan ongoing into a nursing home if/when I need that level of care. And before that I plan in going into assisted living, again if/when I need the help. My family knows my wishes and supports them. I would never want nor ask my family to do caregiving that causes them harm in any way. I am 85 so this is very real to me.

Do unto others as you would have them do unto you!

Absolutely!

I choose to relieve my children of the burden of hands on caregiving me, as my mother did for me. My mother chose assisted living and then an NH as she needed them. She was well cared for by trained staff in shifts whose job it was to care for her and who had the resources to do so without exhausting themselves emotionally and physically.

If you needed care, would you really want your husband to have the life looking after you that you now have looking after him?

Reba; what I posted was meant to be kind. Your profile sounds like a cry for help.

I will post what I wrote again in case you missed it.

"Reba, you say in your other answers that you are caring for your spouse, are suicidal and have major health issues.

That doesn't sound like a recipe for giving your spouse "good" care.

Have you looked into hiring in-home health care? Or finding a different nursing home? Good nursing homes DO exist."

I am sorry you did not find kindness here.

But I hope you find support & the help you need somewhere.

I wish we had the chance to talk, to really hear each others views. It would hopefully make a difference. Grow some empathy & understanding.

Saying yes to being a fulltime caregiving to one person has consequences. It may mean saying no to caregiving others.. I found that. The message was 'Family helps Family'. Yet how could it work if I left paid work? Left my husband with sole financial burden for our children? Left our children unsupervised & without?

Not everyone has the health themself to be a caregiver, or wealth to leave a paid job.

Alternatives thankfully exist. No man (or woman) is an island.

Last comment before I remove myself from this website. I didn't mean to sound judgmental. Of course, if my husband was unable to 'very very slowly and carefully, with the use of a quad-cane' get himself to the tiny bathroom in our small 'zero-lot line condo-type home' or if he was worse than that- completely like a vegetable, then at that point, I would need more help. My point was, there are a lot of people who just don't want to be a caregiver at all, even if their loved one is semi-able to care for themselves - so they choose to put them in a nursing home. I wake up daily to urine-soaked sheets on the couch bed downstairs where my husband sleeps, I start work at 7, take my lunch hour at 11, lift him up (220 lbs) - get him in the wheelchair, clean him off, get him dressed, get his coffee and breakfast, a plethora of pills, throw the sheets/blankets in the washer and as I stated before, grab something quick to eat and rush back to work. YES, there are those who have it worse than me. I'm sure. I already cry every single day, I'm in pain all the time, I'm half-crazy with depression so y'all could've tried to be a bit nicer. I wish you all the best. Good-bye.

Reba you are being judgy. You are also right, people are selfish, but not the ones you think. Those who expect others to give up their lives so they don't have to change theirs are the selfish ones. I totally agree with he poster that asked if you would expect her to put her kids in foster care so she could quit her job to be there for a parent....please answer and tell us your take on that.

Daughterof1930. Amen . It is so true that trying to give care at home can be too difficult. It is why many including Reba are exhausted . It also struck me what you said about the staff. I too worked in nursing homes for many years and loved it . After taking care of my parents I could never work in a nursing home again . Caregiving for my parents burned me out . Caregiving for a family member comes with a lot of emotional baggage .

What if it was me? Completely honest answer, I desperately hope I’ll never be placed in a nursing home. And I would bet most everyone here feels the same, having not read a single reply to this post. I also know, without doubt, that I will never try to extract some promise of NEVER out of any of my family members. This I know for a fact because I watched my mother’s life change 100% in a blink when a devastating hemorrhagic stroke took away literally every ability she had. Unless you witnessed it, you truly cannot imagine what I mean. She couldn’t do anything, sit up, roll to either side, eat, drink, use her hands, legs, feet, nothing. She lost the ability to speak. She was a two person assist for everything and every move. I defy anyone who isn’t a millionaire to accomplish the level of care she required in a home setting. And I’m forever grateful for the kind, compassionate, competent care she received from so many nursing home staff, so many who told us they considered nursing home employment to be their “life’s work” and they wouldn’t want to be anywhere else. Yes, my mother raised me and cared for me, she adored her grandchildren, and it broke my heart every time I saw her in that setting. Tomorrow is Mother’s Day and I will be sad over it all again. So thank you for calling me selfish and so kindly putting this out to (not) judge. I hope your situation goes far more smoothly

Hi Reba - I think your message has some contradictions, so I come away not understanding...

You state that "you're not judging anyone" - but, in essence, it sounds like you are - especially referencing that "you hate how selfish people have become." - and it's in regard to people making other care giving decisions than yours.

But you said if your son wasn't helping, then "you'd be insane by now and suicidal" - not everyone has a support system to help as you do. There are many factors to consider when providing the best level of care for a family member. I just think every situation is so different, and sadly I feel that your post can cause others to unnecessarily feel guilt for taking a different route that may, in essence, be the best for a family member and their own well being.

My Dh is currently caring for his mother at home, in Hospice Care. She is needing 24/7 care and so the 3 sibs are taking shifts around the clock. She is NEVER left alone. She has everything she wants and more. And she did extract that 'promise' from her kids that they would NEVER put her in a home.

Flash forward 30 years and she is rapidly burning her 'kids' out. She's 92, her kids ar 75, 71 and 67. They are not spring chickens. DH and his brother both have multiple health issues. Does she even THINK about them?

Nope, not for one second.

Is she grateful to them for essentially putting their lives on hold for the next--maybe 6 months? No.

She's angry, combative and mean. (This is not new behavior). She is on 3 different benzos to keep the anger under control. She won't eat, drink or follow instructions.

DH is beginning week 3 of this madness. If we weren't leaving town for a long weekend this coming w/e, I think he would have a nervous breakdown.

Last week there was 'talk' of placing her, as her needs are growing exponetially as she gets weaker and weaker. IDK what happened in that conversation, but they didn't place her or even make any attempt to do so.

These 'kids' have put their mother's wants and needs ahead of their own and certainly to the detriment of their marriages. DH has often asked me if I had known how bad she was going to be, would I have married him. I probably answered a little too quickly--"Absolutely NOT". And I had been warned by a LOT of people who knew her that she was a harridan and would hate me for marrying her son. And they were all correct.

It hasn't ruined our marriage, but it has definitely been the #1 thing we 'argue' about--altho we don't really argue. What's the point?

People certainly can be selfish. In this case, it's the one who needs all the care. The CG's are killing themselves caring FOR her. So, yeah, people can be selfish. It goes both ways.

She is killing herself taking care of her husband. Seems like she expects her son to martyr himself to. She is also envious of others who made different care arrangements so they could have a life besides caregiving.

We all do the very best we can and try and make the best decisions for our personal situations.
Anyone that is or was a caregiver for a loved one knows that it's the hardest job in the world hands down. And then you add the stress of every day life on top of it and it can be a recipe for disaster if you're not careful.
The most important thing I learned on my 24 1/2 year caregiving journey with my husband(who had a massive stroke at the age of 48 and didn't die until the age of 72)was that I mattered too. It took me a while to learn that, but once I did I made sure that I was doing things that I enjoyed and was making sure that I was making time just for myself.
Caregivers have a 63% higher mortality rate than non-caregivers, and 40% of caregivers caring for someone with dementia will die before the one they're caring for from the stress.
Are you wanting to be one of the folks in those statistics? I sure hope not, as I'm sure your son would like to have you around for a while.
And just a friendly reminder....there is only one Savior and His name is not Reba63.

P.S. I did keep my husband at home until his death in 2020, and was grateful that I could. But not everyone is in a position to do so, nor should they. It really does come down to what is not only best for the person being cared for but also what is best for the one caring for them, as again both parties matter.
I hope and pray that you will get more in-home help if you plan on keeping your husband at home and that you will take time away just for yourself so you can find your joy again.
God bless you.

Reba,

The bigger issue you have is that you say you are suicidal and exhausted .
Get more help coming in to help take care of your husband before it kills you and then your son is left to deal with this himself. I ask you , do you want your son exhausted , suicidal and feeling like he is to never put your husband in a nursing home? Are you willing to sacrifice your son’s life ? Do you expect your son to sacrifice his life taking care of possibly both you and your husband when something happens to you ? There is more than one way to make sure people are taken care of. None of the ways are perfect, easy or selfish. What is selfish is expecting someone to care for them in a certain way , therefore causing guilt and possibly detriment to the caregivers health and mental health. A caregiver should be supported by having options that will keep both the caregiver and caregivee healthy .
When someone comes to this forum in the distress that you describe , it’s very logical for people to try to give you advice on how to save your life . Many guilt ridden people in distress like you come here looking for permission to put a family member in a facility.

Those are good questions.

Reba, I think your feelings come from a good place, a good heart. But sometimes, a facility is necessary. "Never" and "always" are big words. Like "never placing in a facility". It's a case by case situation, where every case might be different.

Reba, I think it's great that all your siblings also helped your elderly parents. I hope some of your siblings were male; that would make me even happier.

You are only 60, and your health is getting worse thanks to your martyrdom. Your son lives with you. Is he going to take care of you when the time comes? Is he going to possibly take care of you and your H?

Sometimes posters think this forum is the Martyr Selection Committee.

I wrote: I agree that sometimes people in this world are VERY selfish.

I'm not referring to caregiving. I mean that as a general statement.

I have already told my two children, and legally put in writing, that if I were to become to confused/medically complicated/WHATEVER, that they MUST find the very best residential care setting accessible to them, PLACE ME IN IT, and support my needs with whatever supplemental care they find necessary.

NO ON HERE has exactly the RIGHT SOLUTION(S) FOR ANYONE ELSE.

Generalities formed by opinion are NOT the solution to everyone’s care needs.

The LO for whom I am in the process of completing care took care of HER mother for the last 5+ years of her life, while simultaneously working in a full time, very difficult profession, sleeping intermittently because of her mother’s daily disrupted sleep, juggling caregivers canceling at the last minute, coming in and out, and all the other “inconveniences” of caring for a totally disabled woman in a house with one difficult to access bathroom.

MY LO was left, following her LO’s death, with premature kidney disease, high blood pressure, glaucoma, PTSD, and an inability to enjoy the retirement that she’d earned.

The final result of this self imposed, unavoidably unhealthy lifestyle became what resulted in a protracted but tragically uncomfortable death.

I WILL NOT DO THAT TO MY CHILDREN.

Even if either or both of them mistakenly CHOSE to impose my 24/7 care on themselves, they know already that I absolutely totally reject this misplaced offer.

My care, MY DECISION, and one that should be made BEFORE cognitive failure disrupts the decision making of the person needing care.

In a “perfect world”, dependent people with deteriorating cognitive skill would be cared for SAFELY and HUMANELY, whatever the appropriate site was deemed to be.

When “home” ceases to be meaningful in a brain impaired by dementia, other options can become more appropriate.

My LO, whom I loved as dearly as my mother, could NEVER have been cared for as safely and carefully in her home OR MINE, as she was in the fine care center where my own mother had died several years before.

The decision is often hard and unpleasant, but “I’d never put him/her in a home” is as pointless as “Let’s put Grandpa on an ice flow and send him out to sea”.

Agreed about needing to be aware and flexible enough to know when things arent working and making the necessary changes.

Plus, even if it does work for awhile, it doesn’t mean that it will work forever.

Your point about change is spot on. The one constant in our lives is that it is always changing. Circumstances change and we must adapt.

If that works for you great but it doesn't work for everyone.

Many adult children caring for their parents are elderly themselves or they have their own health issues, or the parents are abusive.

In a perfect world sure all elders would be cared for at home. But this isn't a perfect world and people do the best that they can.

No one likes change but change and death are the only guarantees in life.

On the one hand OP, I have a similar attitude, in the sense of doing what I can to try to keep my Mom home (I organized caregivers). But I won't try at all costs (imagine one day she's violent towards the caregivers; I'll place my Mom in a facility). I agree that sometimes people in this world are VERY selfish.

On the other hand OP, you wrote "I'm damn near suicidal. If I didn't have my son to help me, I'd check myself out."

So.......
you have a son who helps care for your husband. You don't do it alone. How can you talk about people who're caring all alone for their spouse or parent?

You have a very fortunate situation that you're not alone caregiving.

Also from your profile, your husband WAS in a NH for a few months. You see? You needed the NH for your husband for a while.

Reba,

I’m sure that every person on this forum has empathy for you in regards to your struggles as a caregiver.

We also relate to your husband’s struggles as a person in need of care.

Do you understand that the life of a caregiver is equally as important as the life of a person who needs care? This isn’t a competitive situation, where one person wins and the other person loses.

A truly harmonious relationship happens when both parties are satisfied, meaning that the person in need of care receives adequate support and care and the caregiver becomes free from the burden of caregiving and is able to visit their loved one in a facility as their spouse, child, niece or nephew, or grandchild.

No one is taking sides here. We see the validity of each person’s side. We are on your side and your husband’s side.

When your mother or spouse requires 24/7 care and has a violent or suicidal meltdown when you’re not by her or his side, how do you earn a living? How do you get any sleep? Go to the doctor or dentist? Shop? Have the car serviced?

Reba, one more question. And I DO expect an answer. Do you think I should have put my three children in foster care so I could spend 24/7 as required to care for my mother?

You have a narrow view. Honestly, I have tried to get myself admitted to two different nursing homes. They both said no. I have no spouse, siblings, parents, or children.

Reba, you say in your other answers that you are caring for your spouse, are suicidal and have major health issues.

That doesn't sound like a recipe for giving your spouse "good" care.

Have you looked into hiring in-home health care? Or finding a different nursing home? Good nursing homes DO exist.

Please stop yelling & calm down.

When you are calmer we could have a proper conversation.

No-one can be 100% sure of what they will/won't do.