I feel that all that I am to my wife is a 24/7 caregiver. Any advice?

This hits close to home and presents an issue I have had to confront as well. Please take the responses I’ve seen here for you to take time to care for your needs to heart. I know that the better I feel, both physically and mentally, the better I cope with my wife’s and my circumstances. But that is only part of the answer to your question. The idea of losing your loving husband/wife relationship and becoming nothing more than patient/caregiver is one of the most difficult issues with which you will have to deal. I can tell you that dealing with that, like everything else, is a process and you will do well some days and poorly on others. After years of caregiving now, what I just recently have started trying to do is finding new things that I can do for my wife, not because she “needs” them but just because I love her. I know that everything we do for our spouses is out of love but we get so wrapped up and worn out providing for their needs, we quit, how should I say it, romancing them. An example: my wife loves Christmas but is confined to her bed 95% of the time. I quit decorating the rest of the house and bought a smaller tree and put it up in her room. We put on Christmas music and decorated the tree together by me bringing each ornament to her and we shared memories about the ornament before I put it on the tree. I decked out her entire bedroom. The idea here is not to decorate her room but rather to try to find things that she will enjoy that you can, in a modified way, share together. We’ve done that with wrapping Christmas presents. We have turned her shower days into “spa day” and do face creams and body washes. In many cases, it’s how you approach the things you are doing anyway; you just try to make it more fun for her. That has helped me to se her more as the girl I dated 53 years ago than my patient. Please don’t hear me to suggest that this is easy or 100% effective. But, it helps. We get so tied up meeting our spouses physical needs, we neglect their emotional needs (as well as our own). While it may sound like “one more thing” you have to do, the benefit to your relationship with your wife is worth it. Doing these types of things provides an emotional connection that is otherwise missing. Try to think of it like you are dating. When you are wooing someone you do things just because they would like it, just because it’s a sweet thing to do, just because you love them - try to do more of those things. It’s on you now because she can’t do those things. Hope that helps in some small way.

I certainly understand where you're coming from. I used to say that I felt like I was living the movie "Groundhog Day", where you just keep repeating the same day over and over. But that was before I learned how very important it was to take time for myself whenever I could. It's so important to make sure that you are doing little things for yourself everyday, to prevent the burnout you are now experiencing. It can be as simple as going for a walk around your neighborhood, meeting a friend for lunch or supper, going to church or just going in the other room and reading a good book. You will be amazed at how just doing some of these little things will change your perspective and give you strength for the journey.

I also used to say that I believed that God would never give me more than I could handle, until I was corrected by a woman at my church, who told me that yes He would give me more than I could handle, because if He didn't, we would think we could do it all on our own, and not depend on Him for help. That was eye opening for me, and made perfect sense. And by the way that phrase is no where in the Bible as many quote it like it is. The Bible says that "He will not let you be tempted beyond what you can bear. But when you are tempted, He will also provide a way out so that you can endure it." 1 Corinthians 10:13. There's a big difference in what God is actually saying there, so quit trying to handle it all on your own. Hire some outside help if needed, even if it's just so you can get away for a little while, start doing some more things for yourself, and ask God to help give you the strength and courage to continue on this journey. He will help you, and will reward you for taking your wedding vows seriously. May God bless you and keep you.

It's called caregiver burnout. It happens all the time, and ironically it happens to good people who actually care enough to sacrifice completely of themselves for the selfless good of others. You keep asking yourself, "when will I emerge on the other side of this thing, and how? Will I be stronger, wiser, a better version of myself?"

The answer is not a simple one. Perhaps you will be one or a combination of those things, but you will also certainly be be older, and for at least a short while, disoriented and fatigued.

It's important to come to terms with the realities of your wife's condition, and your ability to cope with it for any length of time.

Is she terminally ill? If so, what is the prognosis in terms of time? Does she have dementia and is otherwise fairly healthy, because depending on age, you could be caring for her in such a state for MANY YEARS to come...

If you can rationally accept that you are only human, and a good human at that, you may be able to begin to reasonably discern: A.) The duration and course her illness may take, and B.) Your physical, emotional, spiritual, and financial ability to care for her for said course and duration.

Does she have any family? Any resources, human or financial, to assist in this process? Being a caretaker from 6 month of marriage is a hefty burden and you are not a monster for thinking so, nor are you cruel to imagine how you can remove yourself compassionately from this situation.

Check out the NIH and subsidiary NIA. Look up your state's department or coalition on aging, there may be great information to assist you in figuring out what to do next- the county you live in may also have a similar website or resources.

Remember, if she is truly disabled, she will likely be eligible for Medicare and social security. Similarly, you may be able to collect a stipend for cating for her which can ease the burden financially. You may have to take a short course on caretaking, but anything helps, and honestly you probably know most of what they're going to teach you anyway, so it should be a breeze.

As a 34 year old caretaker of two grandparents in their late 80s since I was 30, I have run the gamut of similar sentiments, and they are never easy to come to terms with or rationally hash out.

Bottom line: if you can achieve the monumentally difficult task of separating the emotions from the crucial accounting of the material facts, and add a heaping dose of your own wishes to how you would like this delicate recipe to turn out, you will be so much better off.

God bless you, and good luck!

JJAS57 - You are definitely burned out from caregiving. Most of us who take on this most difficult job will hit that point sooner or later.

I know the feeling well. The feeling of being tied to my Alz. mother 24/7 and not being able to do anything without considering her needs. My family (husband, me, and 2 teen daughters) have not gone on vacation for 5 years now. Now that she's incontinent, OMG, I'm tied to her bathroom needs daily. OMG, OMG. I want to scream. Why? Why? Why do people have to live way too long beyond their ability to care for themselves? Medical miracles that doctors can unclog hearts, by-pass clogs, prescribe drugs to control blood pressure, and a whole host of diseases. But what do these treatments get us? They get us people who are so unwell, so sick, so damaged, but just keep on ticking, and become dead weight for everyone else.

JJAS57 - Sorry, I'm just releasing my frustration tonight having to deal with a disgusting diaper.

One silver lining for what I am going through is that I know I do not want to become a burden for my kids or my spouse. I'm putting together my living will. Not complete yet, but so far: No heart surgery for me after certain age. No heroic treatments. No life / death prolonging drugs, DNR (which will break your rib bones, and might leave you brain dead), and more to be added.

JJAS57 - Most everyone here knows exactly what you're going through and how frustrating, tired, overwhelmed, and burned out you are. We know because we've been there, or are still there. Your life / retirement as you know and hope it to be is over and gone. So sad.

My condolences over the very difficult situation you find yourself in. It had to be a particularly tough pill to swallow to become a fulltime care giver to your brand new bride, and to take on a role that hit you out of nowhere. I don't think you're selfish in the least for feeling lost and frustrated...you're just human and reacting like anyone else would.

You need to think about a long term care plan now, for your wife and for yourself. There are TWO lives at stake here, not just one. Does your wife have children who would be willing to help you out with her care? Or perhaps you can hire in home help on a part time basis and increase the hours as needed.

You don't mention what her heart issues are. Could she be a candidate for cardiac rehab? Is there a diet and exercise plan you could both embrace that might help her improve? I ask that because my husband just had triple bypass surgery and I'm helping him with a lifestyle change. I'll also tell you that sometimes I feel like running away....when he won't even take responsibility for drinking a Boost to keep his calories up. I didn't sign up to be a babysitter, but here I am. He'd do the same for me, I know. But I use tough love with him too, and tell him to pull on his big boy pants and do HIS PART! 😁 Team work is essential in a marriage. It can't be ONE person doing everything all the time, either.

I wish you good luck and Godspeed coming to a resolution to your difficult situation. Sending you a hug and a prayer for peace.

jj,

Thanks for the additional information.

You are a lovely compassionate gentleman. I admire that BUT you are not responsible for all of your wife’s care. She will adjust to receiving help from others.

I want you to know that that you are stretching yourself far beyond what you should be because you feel so badly that your wife is suffering.

I cared for my mom and I was over extending myself because I felt obligated to do so. When I let go I felt the weight of the world off of my shoulders.

Many on this forum encouraged me to take care of myself.

I realize that your wife has many health concerns and that it’s natural to want to comfort her.

You have NO control over her health issues.

Her situation is more than you can handle by yourself. Call her doctor or Council on Aging in your area, ask about the necessary resources that are available to help with your situation. Ask about planning for placement in a facility if you feel that is appropriate for her future care.

You are NOT being strong by holding on. You are becoming weaker and you are inadvertently causing harm for BOTH of you.

I am sure that she appreciates your efforts but I doubt that she would want you to over extend your capabilities.

Do you feel that you are not giving enough? Trust me, you have given more than ENOUGH!

Please let go of any guilt that you feel and know that you have gone ABOVE and BEYOND for your wife.

You are not being selfish at all by needing to nourish yourself.

I hope that I didn’t come across too harshly.

Your heart is in the right place. I feel that you need to adjust your actions by reaching out for the help that both YOU and your WIFE will benefit from.

Sincerely wishing the best for you and your wife.

Take care.

Jj, I am so sorry for what you are facing now. But I commend you for opening up on this forum and seeking help. I found this a wonderful, safe place to vent frustration and seek advice while my father declined and passed away this summer.
As so many have already said, you need to take care of YOU! If you are exhausted, burned out, and frustrated you can't be any help to your wife.
Encourage her to do all she can to help herself. It's sometimes easy for a person with extensive health issues to accept, or expect, more care than they really need, or to fall into victim mentality. Don't let this happen, it's a hole you can't climb out of!
Double check your health insurance policy and see if there is a provision for any care. Sometimes people have a small benefit.
Hire more help! Get out of the house. I know there aren't many places to go in lockdown but even driving around for an hour with your favorite music playing, and no one knowing where you are can be rejuvenating.
Can she be left alone for a couple hours? Maybe put in an inexpensive camera that transmits to your phone.
And keep visiting this forum. The people here can all relate to exactly what you're going through. Check out the articles here on finding care and other topics which are very informative.
Best of luck to both of you.

JJAS57, you said: "I don't see it getting any easier, it's actually getting harder. I don't know what else to do or where else to turn."

You HAVE TO get help. You must take breaks and recharge and live a sliver of your life separate from the caregiving job you take on. Can you afford to hire someone to come once or twice a week for a few hours to stay with her so you can take a break? I read a post from someone who said you can't pour from an empty cup. That's where you are, JJ, empty. You need to refill, or else you will wither away and may die before your wife. I'm not trying to scare you. I say that because a large percentage of caregivers die before the person they are caring for.

Take care of yourself. That is not selfish. That is necessary.

I am so sorry that your wife's health has declined so early in your marriage. Being a caregiver is not for the meek.

In your marriage vows you promised that you would take care of your wife. That doesn't mean to solely care for her. It doesn't mean at the expense of your own health. You've already expressed your frustration in caring 24/7. Frustration can lead to anger and anger can grow into resentment. Don't let that happen. God may not give you more than you can handle but he can sure put you to the test. I'm glad you've hired someone to give you a break. But 1 hour 3 times a week isn't much. Can you afford more? Can you afford a 3 hour break?

Are you a veteran? If so call the VA they may be able to help. Talk to your pastor. They often have contacts, maybe even volunteers who are willing to give you some time off.

You feel that all you are is a 24/7 caregiver to your wife. That, my friend, is no meager responsibility, it is a noble act of love. But so is caring for yourself. It's not selfish, it's necessary. Do what you can but get all the help you need.

Your loving care of your wife is wonderful, but unfortunately the fates have intervened in a way to prevent your doing together some things you may have done together in the past. I don't know what they are, but did you share such loves as long walks, golf, activities she can no longer do? I think part of the key is that your life must now be a combination.
You had a life four years ago before you met, and then you had a life together for only 6 months before she was struck with bad limitations. It sounds then as though you became a caregiver, giving UP the life you had both before you met, and after you were together. I think it may help you to take a step backward to those times, those friends, those walks, golfing, perhaps even travel that you did. You wife will survive some hours, days without your being there.
Be certain also that you are maintaining what independence for her that your wife can still have. There is a big difference between your taking on all the cooking and cleaning and letting you HELP her but being the sous chef for her when she cooks, and etc.
I am afraid you may think that if you cannot do things WITH her, you cannot do them; such is not the case. My partner and I seldom are doing the same things. He may be off shooting arrows while I garden, or down in the workshop while I read, and etc.
I wish you good luck finding ways to have a more full life, and do remember, right now we ALL feel, during lockdown, like we are basically getting up and doing the same thing every day.
I sure recommend a few games you might both like, whether chess or rummy or a puzzle; these things put your minds together in another place and are a relief.