I’m ready to have a life back. I’m thinking of a nursing home permanently, but the guilt holds me back... why?

Sonia, I’m sorry you’re in this situation, and I’m sorry your husband has refused over the years to do anything to help himself and his health. You’ve done an admirable job in caring for him. It looks like the time has come that your own health is going to soon decline if you don’t make a change. Where would your husband be if you weren’t available at all to care for him? If you make the decision to have him move into a nursing home, you’ll still be caring, you’ll be having professional help in the most hands on portions of his care, and you’ll be able to watch over him and ensure that he’s comfortable and well taken care of. As it is, you’re worn out and not at your best to care for him. I wish you blessings as you move forward

Why? Because you are afraid that it somehow makes you fail as a wife.

It's very important to realise that your key duty as a wife is to do what is best for your husband. And while there are certain people who will bang on about "in sickness and in health", and make you feel there is some kind of perverse virtue in continuing to suffer as you are, these people are overlooking the practical fact that several highly trained people working as a team can provide *infinitely* *better* care for a man in your husband's physical condition than one exhausted, untrained, heartbroken woman.

Be a good wife to your husband and find the right nursing home. Then you can also get back to being a wife who loves him rather than dreads him.

Well put Country Mouse. As my Mom once said, when they get old you get old too. With all that is going on with your husband, your are not mentally or physically able to do it anymore. There is nothing wrong with that. You first need to look at your finances and see if you will need Medicaid now or in the future. A skilled nursing home is what ur DH needs. Assisted Living is not equipped for his health problems. You then can see him daily and make sure he is well cared for. Be someone the staff is glad to see. Believe me, I asked questions and asked if certain things could be done for Mom but I also made the Chas aware that I know how much they do for little money.

Even nurses get burned out. He made himself a burden with a lifestyle of body abuse and dragged you along for the ride. As an adult we all must face the consequences of our decisions.  Your issue may also be financial. He has to be on Medicaid. So unless he's already on Medicaid that's another nightmare to deal with. If he is already on it, then nursing home will be smooth.

My heart goes out to you. You do deserve a life that gives you time for your own needs to be met. I so agree with others and actually you are doing a kindness to him to move him there for the constant care he needs by skilled individuals. You would be kind to yourself to then allow yourself to be a loving companion. You are suffering from compassion fatigue which is a real syndrome and if you’re not careful could become seriously ill both emotionally and physically. That my dear is not being selfish and guilt should play no part. I imagine the guilt is coming from this imaginary role society puts on us that a wife should be able to sacrifice and do it all. Women are good at that and it is not healthy. What is healthy is to know your limits and to take care of yourself.

You have given your husbands well being more importance than your own. You have to understand that your life has great value. It’s time to let him go. The nursing home will take great care of him. Move forward and start taking care for you. Live your life, find out who you really are and embrace the journey.

I'm sorry for how life has turned out for you, Sonia17. I can't imagine your struggles. I have to agree with others upthread. With everything heaped on your shoulders, one thing that doesn't deserve a place there is guilt.

You've done the angels' share of the work. Start that road to the nursing home. You must take care of you too. {hug}

Women particularly are "taught" from an early age that we are the caregivers, the nurturers.
Even wedding vows..in sickness and in health..until death.....
But when it gets to a point when your own health is at risk, when the person you have loved and cared for, took those vows with does nothing to care for you back (and taking care of his own health in a way show disrespect to you as well as himself) you need to put yourself first.
(Isn't that what they tell you on an airplane?)
Placing him in a Nursing Home, Assisted Living or Memory Care if his dementia is to that point, will allow you to become his wife again not his nurse, caregiver. He will have care 24/7, you can not do that. He will have trained professional people to care for him, almost no one can afford that at home!
And unless you have a house that will accommodate his continued decline you may have to do that if he remains at home.
Do not feel guilty....he should feel guilty being the cause of many of these problems.
Do not feel like you have failed...he is the one that has failed in caring for himself, he could have made his life better.

Possibly the guilt comes from, "Promise me you'll never put me in a nursing home!"

Both my parents and my husband asked me to promise and I told them all that it was a promise I couldn't make with a clear conscience. My mother quit her medications without telling anyone and it was a very rough last 6 months for her. My dad lived another 7.5 years and we moved him into a new mobile home in our front yard and he ended his last week on Hospice. My DH is 96 and still here at home. As long as I can keep him ambulatory, I can manage.

I like to call this the flip-side of my wedding vows but really? It goes way beyond that. I do it out of love and he daily tells me how thankful he is for me. It makes it easier.

But I have read a lot of posts here at AgingCare and not all caregivers are thanked, much less appreciated. When it turns into a burden, you have to think of alternative measures.

Oh Sonia, I am so sorry that you have been in a one-sided marriage for 30 years. I can not fathom what some people think while destroying themselves and the ones they profess to love. You have honored your wedding vows and deserve a medal for caring for all of his self inflicted health issues. I personally believe that you (me or anyone) can not care about someone more than they care about themselves. If they don't care, they make your care of them as hard as possible, creating anger, resentment, bitterness, frustration which in turn makes us feel guilty. Ugly, vicious cycle that only the caregiver can stop. You have reached your stop sign, you have no reason to feel guilty, easier said then done, I know. I personally had to keep reminding myself of all my dad's choices that led to the consequence of being in a care home, I wasn't nursing the anger, hurt, etc. I was keeping myself from eating myself up with guilt, it is a hard decision to make for another, not something I wish on anyone. Unfortunately some of us have to do it. Your husband may have a fit or meltdown or be just fine with it, with dementia you never know. He will learn to adjust and so will you. You deserve to have a life outside of caregiver, 30 years at any job makes you eligible for retirement. If you can afford to get the help of a qualified elder law attorney to help get the financial aspects of placement all in order, Medicaid can not take away your living but if you don't have someone that works on your behalf they may take more than they should, we get sued and prosecuted and they get a oops, guess the person helping you didn't understand. So protect yourself, if you need financial aid. Do your research, go look at facilities, have a meal, talk to staff and residents, find out if you can have a copy of the activities list, hang out for a while to see what's what. Then make your choice, doing these steps will help you know that you did the best you could to put him in a good facility, that will take care of his needs.

You can do this, you have been a good and faithful wife and now he needs a village to care for him. You can see him as you choose, when and if you choose. Be kind and gentle to yourself, this is a big change for both of you. God bless you for all you do for your husband.

Please come back and let us know how you are doing. We love to help and hear success stories, rants, vents...whatever you need to do. You will get support for your decision and the rough spots that are bound to come. Hugs and love to you in this hard trial.

THANKYOU for the support , so very much appreciated ,,

This is so sad.  I do not have all the answers but if you need brain surgery, the
thing to do is go to a brain surgeon-not me. I may be a great person and want to help, but you should not let me do surgery of any kind on anyone.   It is not evil of me because I cannot perform brain surgery.  Each of us are given resources to offer to help others.  We are not their Messiah (Jesus already did that).  We can offer only what we have but we cannot supply what we do not have.  There are only 24 hrs in a day.  We cannot give 
36 hrs.  There are other people who can help us with our mission.  Sometimes it is so
easy to see in one situation, but hard to transfer those truths into other situations.  I am not saying you should or should not go the NH route.  Truth can be embraced, and then
look for what options embrace that truth.  I would suggest make a list of all the issues
involved.  Sort them into groups of connected issues.  Then look at them separate from
the big picture and find out what is real and what is perception.  Once you have the
"truth" from each facet, look at those to be the factors in the big picture.  I have found
that a lot of times, I have been faced choosing between A and B and not even considering
C and D which I had no idea even existed.    My mom is on Hospice now and I have been struggling trying to figure out how and what to do, only to discover there is respite care,
volunteers who come in and "baby sit" so I can go out, people at church who volunteer to help, family who volunteer to cover for me....  I do not know what relief is available for you,  but I hope this will help you see beyond the wall you are facing.  

Sonia - just do it. Start the process today. You have more than paid your dues. The job of caring for him has become too much, and would be too much for anyone for the length of time you have done it. 24/7 professional care is what he needs from now on.

Time to look after yourself. (((((((hugs))))))

Sonia I just read your post and can’t believe the timing. I’m in the same boat. Spouse w MS 36yrs. 15 full care. I do have ihss care coming in but it’s not enough anymore. He’s having cognitive decline which is changing his personality. He distorts reality thus very crazy making. My therapist n daughters are very worried about me. I guess I need to face my fears n do it. I definitely understand where you’re coming from and wish I could talk to you. I feel so alone w this decision

Tbone52, reread all the answers in this tread as if they had been written for you. I'm pretty sure they would have been if you had posted the question first.

I promised my husband that I would never abandon him, that I would always be his advocate, I would always be with him often, I would always see that he had the best care available. If it ever came about that the best care was in a care center, I would continue to love him and be with him often.

Sonia and T, if I had made that promise to either of your husbands they would be in nursing homes by now. Doing your best for someone has to include acknowledging when your best isn't the best available under the circumstances.

Don't ever abandon your husbands. Don't ever drop them off somewhere, wave goodbye and never look back. If you do, you deserve to feel guilty. Act honestly in love and there should be no room for guilt.

So many of us are in this position. No one takes care of us. I recently read a Nora Ephron quote that really hit me: Above all, be the heroine of your life, not the victim. It's very tough to do, but no one will allow you to live your life unless you take control. You've given so much....

Sonia I’m in the same boat 😔husband w MS for 36 years. 15 full care. He’s had ihss help for 5 years. Some cognitive issues now making it hard to reason w him. I’m reluctantly looking into skilled nursing. My therapist and daughters are very worried about me😔. I’m worried about me too. I truly know what you must be going through. I’m glad to at least have this forum for support knowing we’re not the only ones. Good luck w your decision

I feel so silly cuz I tried to post n it wouldn’t accept it. Log in problem...So I just reposted lol. Then saw that it went through Oh well

This is your subconscious telling you to prepare for the inevitability of placing him in a nursing home. Sit down with an elder law attorney to put all affairs in order and draw up whatever documents are needed such as a care contract to place value on what you currently do for your husband. It may take you a while to emotionally be ready for him to go to a nursing home, but the time to do the preparation/legwork/paperwork is now. Put his name on a waiting list or two. Just doing the things you need to in order to be ready might help you feel better and put it into perspective. You don't want to just be starting this stuff when you are completely and utterly exhausted. Ultimately, you need to take care of yourself.

Sonia17: You must have been a super girl to do this for 30 years! Good grief! I cannot imagine that. That's a sad state of affairs that as your husband treated his body so badly that now he has to "pay the piper." Definitely sit down with an elder law attorney and figure out the wherewithal for what steps have to be taken next.

Sonia, I am too, sorry to read of your not being content with your present life style of which you didn't have any responsibility creating.

I know that it is so very difficult not to feel the guilt since all of us took a vow of for better or worse, sickness and in health till death do us part; but at some point even these vows are broken, but when does one decide?

No, I am not going through this with my husband nor he with me, but I've seen it with my grandparents and now my parents. I will say that God broke the mold when he made my step-father and I really think he has a direct line to God.

Our daughter who is an RN feels guilty that she moved away from our home State 3 yrs ago because of Mom's condition(s) now, which includes the diabetes. Daughter shouldn't feel guilty because she couldn't see into the future nor any one of us.

We've lived out of State for 15+ yrs now and believe you me, I feel so much guilt for not being there for Mom right now and not being there to help on a daily basis as I do not have to work outside of the home and I always helped Mom.

I am however, doing everything I possibly can to help Mom and my step-father. I am contacting every single State agency there about not only help with in-home care, food delivery, small house keeping duties etc. Your tax dollars go toward these agencies in some cases OR they are non-profit and need to prove to the State that they are in dire need of larger grants.

Yes, some of the agencies are Medicare certified and are paid by Medicare for the services they provide.

Yes, some require a bar criteria with financial ability to pay yourself.

Yes, they also have services to provide you with respite so you have time away for yourself. It can be anywhere from few hours to 4 hours depending.

Yes, they can provide nursing services during the day via Medicare grants

In my home State, the YWCA provides all types of services, but in particular areas of the County; they can make exception(s) if necessary.

Look into the SAIL program which is run by the State.

Do you attend church? Perhaps you could ask the ladies committee for help. There are some churchs you may find on line that will provide you with help too.

Since you stated that in-home care was taken away by Medicare, have you even looked into what it would cost to place your husband in a nursing home? I contacted several in-home care companies JUST for 3-4 hours 3 days a week for Mom. Suffice it to say, it will cost me....NOT MEDICARE....ME, $1500-$2000 a MONTH to just get a small portion of services Mom needs. NO HELP FROM SIBLINGS.

A nursing home......you're looking at about $30,000-$50,000 per year; unless you're willing to place him in a facility that takes Medicare patients, BUT you will still be required to pay a portion and they're not really all that great.

Be sure to check your State law too. Some States can require you to sell your home to cover the costs. States like Ohio changed that law about 6-7 years ago, until they did, the spouse still in the house and able to take care of his/her self would have to sell the house and also liquidate assets to pay for nursing home.

Sorry, but perhaps when you're husband is asleep you may want to start researching on your laptop. Trust me, it is tedious, depressing and frustrating beyond any expectation. You'll run into more walls than you ever thought you would.

If you think filing your income taxes is a headache.....trying to get State government departments that know what the right hand is doing while the left hand is doing something totally different will make you want to SCREAM AND LASH OUT.

Contact your district representative or even your US representative and inform them about your displeasure trying to find help for both you and your husband. THIS IS MID TERM ELECTION YEAR AND THERE ARE MANY A LOCAL AND STATE REPRESENTATIVE/SENATOR WHO JUST MIGHT BE WILLING TO TAKE THE TIME TO HELP!! My husband was in the Navy when we married. He had a medical condition no one could explain and he was being used as a test sample for all types of allergy medications in Walter Reed. I called Senator Barry Goldwater and talked with his personal secretary; I used this as he was a close family acquaintance, but the men in black were at Walter Reed the next day, interns running all over the place trying to find my husband's charts etc. Husband called and said WHAT HAVE YOU DONE NOW? I told him and he told me what was going on there. My husband was honorably discharged within the week as he could no longer be stationed at any naval base in the world....which is required medically in the Armed Forces.

Find the weak link.....look in the dark corners of government and you may find the answer....like I said, Mid-term elections!!!

I don't have any extra advice. I just wanted to say that I appreciate how carefully people word things here to (for the most part) be redeeming and encouraging. It is so heartening! Life is hard. It has a lot of hard things in it. If we live in honesty and love, it can be a lot easier. Thank you.

I agree with all these thoughtful people Sonia. I’m still going to put in my 2 cents. I think that’s all I have left.
I cared for my wife with advanced MS, and her now 105 year old mom. Wife for decades and gma for 16 years. Couldn’t continue with it physically, and didn’t want to emotionally. They desperately didn’t want to go in a home. My wife was depressed and quiet, gma asked why I couldn’t continue and cried. My heart hurt, yet had no choice really. It’s now been 3.5 years after. They see it as their home now. They smile, they’re happy, and it’s special for all of us when I get there to spend time. I try to visit daily if I can. But sometimes I play hookey and like it!

After caregiving for so long, something happens to your mind set. I think, for me, I had to justify why I had to continue. I had to find a reason that compelled me to do things I had never done and never wanted to. The thought of putting them in a home went against the reasons that made me ok with what I was doing. I don’t regret those years but, I felt like a traitor of sorts. Our daughter helped immeasurably with her compassion for us all. But sometimes, you find situations that don’t have the answers you want, to make you feel okay. Some things, like caregiving, leave you with unfixable upset and guilt. It was part of the process for me. It’s been really tough, but much better then it was. I needed to take that step, and not second guess myself as I did. You’ll hurt before you feel relieved, but you will feel relief. I can’t tell you what to do, I can only offer up my experiences gained after 35 years of MS.
All of us on this site have pain and experiences we didn’t want. So here we all are, on a helpful site of caregiving people, who share their pain and offer up, in hopes it will help someone.
My heart truly goes out to you. It will work out, and you need to believe that.
Didn’t mean for this to be so long...sorry.
Matt.

Ditto what Matt said.

You can't sacrifice your physical or mental health for anyone else. And, I'm sure they would not want to push you to the brink.

Start on the journey. Have a friend or family member help you along.
We'll be right here for you.

Probably because your parents cared for you. But if you can't provide the care your husband needs it would be in his best interest to get him somewhere that can. Prayers being lifted.

Honestly this question has received some of the best answers I’ve read on this website, all very heartfelt.
COUNTRYMOUSE, Wow! Amazing answer.
MATT (LSTUSCANY), your answer is so touching that made me cry! It describes so well, so simply and sincerely what us caregivers face.

SONIA, the only thing I feel I could add to the great advice you’ve received here is that maybe a better way to approach your decision is revisiting the WHY you want to do this.

I think you feel deep inside that you want to place your husband in a nursing home because of YOU. You are clearly saying you want your life back! You know you’ve been in a way his nanny, his mother and his nurse for a very long time. And Sonia, while all that is true and valid, it shouldn’t be really the *based on love* reason to put a loved one (husband, parents, child, etc) in a nursing home, correct? Because you’d be selfish then, because you wouldn’t be loyal to him and to yourself, because you’d be just taking the “easy way out”, Correct?

Well, look at the situation realistically. Your husband’s situation is bad, very hard to handle, and will become worse. You are tired to a point where you might even subconsciously resent him for the life you’ve had. You might be depressed too.

So, the question becomes: 
If you were looking for a nurse or a caretaker for your husband, would you hire yourself in your current condition?

If you were to compare yourself to professionals, highly trained personnel, emotionally detached and used to deal with everything, how would you rank up?

Exactly. 

So Sonia, I don’t think you’re placing you husband in a nursing home because of YOU. You are placing him in a nursing home because you are a good, conscious woman that understands her limitations and wants your husband to be well taken care of. Am I putting words in your mouth and making this sound justifiable?

No! those are really the right reasons and they are so true! even if you hadn’t looked at the situation with the proper lense.

Go back to your main duty as a wife Sonia, which is to love him! Care for him by making sure he’s receiving the best care possible. You’ll feel more in your loving wife role once you stop trying to wear the many hats you’ve been wearing which have made your marriage morph into mostly a caretaker-care receiver relationship, where neither one of you is receiving what you both deserve and need!

May God bless you and give you peace!

START NOW - it takes a bit of time & effort to get things in order - I agree with many others & the fact you are saying this now means you are close to full burn out - you need to get this done before YOU have a crisis - good luck

Hello again to all who posted and read my blog ,
Husbands diabetic nurse came yesterday ,
Not been since December , ( a review ) etc ,
Not seen matron we have either since December .

Having chatted a talked if recent blood test results
“ and how r u coping “
I feel abandoned , it’s all left to me

“ I’m not a NURSE “
We talked of extra care ,,we can’t afford it
We talked of voluntary care , they can’t do medication or injections ,
We talked of sit in care , to watch my husband sleep

And so on ,,,
A HUG GIVEN !
When the lovely lady left ,
So No help . Just ME ..
I’m not going to rush to look at nursing care ,
But this year hopefully , gradually .. I can get the advice I need
Talk to my G P .
And maybe by end of the year ,, my husband will have nursing care , in a suitable home , I will always care for him , be involved in his care ,,,
This will be my last year of doing it all on my own ,
At times our home is a battle field
Many times a unhappy place for both of us ,,

I wish for my husband to be able to be aware and adjust before , the dementia really takes over him , again THANKYOU for your support ,, it’s been so helpfull
I have appointment with my G P .
Monday ,, my arthritis is painful ,,, and I shall ask for advice

Guilt likely runs deep in your psyche and history. I'd recommend going to a therapist or a support peer-group. While you are ... facing these feelings head-on, expect to feel uncomfortable (or more so). Self-empower-ing is a process. It is learning how to let go of what doesn't serve us and learning what does and allowing the new behavior to be okay. I would encourage you to give yourself a lot of self-love, anyway you can while you do meditations I RELEASE THE GUILT. As in my IFS (Internal Family Systems) trainings, you need to give the GUILT another job to do - not just dump it or push it away [which just buries it]. It needs to do something to feel useful - it can be the gatekeeper for when you feel a need to re-direct your feelings/behavior. It could be the 'inner bell ringer' = time to shift . . . to be present, reaffirm new thoughts and behaviors that will serve you. This process initially may be best achieved with a guide or therapist. GUILT will keep you stuck. Learn how to transform it, with gentleness and patience with yourself.

several things:
you feel guilty because you aren't sure if they will give the elderly person the care that you think they need or deserve.
Elderly Abuse: no matter how great the place seems, those lawyer commercials are always showing an elderly person being hurt or verbally abused.
You are 'used' to the person and still want that person around no matter how frustrating they are.
You are worried that the person may hate you for doing that to them or your family members may hate you.

This is what I have been wrestling with, but at the end of the day, I know that I can no longer subject my family to this and therefore the move is going to happen.