We've been married for 4 years, she became ill after 6 months of marriage. It's all heart related and doesn't seem like it will ever improve. I don't think I'm being selfish when I say I feel frustrated and lost. I believe that God will never give me more than I can handle, but sometimes I feel I'm just running out of gas. It seems every day is exactly the same as the day before. I guess I don't really know what it is I'm asking for here, I suppose I may have just needed a moment to express my confusion & frustration.
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.
Of course you aren’t selfish. You’re tired and running on fumes.
You mention anxiety in your profile. Has she spoken to her doctor about medication for this?
It sounds like she may be afraid. If meds can calm her fear along with therapy it may help tremendously.
What does her doctor say about her health regarding her heart?
Can you share a bit more information please?
Best wishes to you and your wife.
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.
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 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.
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.
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.
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.
It is so important that she does even that she can or she will never get any better.
That is why they won't tell you if she will get better, because they don't know if she is not going to do anything about her situation.
I am sorry if that seems harsh. It is the reality of the situation.
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.
You should hire a Caregiver to help your wife out so you can have a break.
If your wife is too sick to go out, have anice meal delivered and have a Date Night once a week.
Also, make sure you have some you time.
I had no idea what I would be a full time care giver, after I retired??!!
I was a successful full time Realtor, always busy and loved my job.
Now I can not work, my husband has Vascular Dementia, afraid to leave him
home alone. I do finally have a care giver come once everyother week.
But oh my God, its a lot to handled!! Plus Im 10 years younger than him and
1.5 feet shorter than him:)) Kind of tough, hes angry a lot and anxious, but also
an alcholic. So I have my hands full. DMV recently too away his right to drive, thank GOD!! I worried about his killing himself and someone ELSE!!!
Before I would have at least an hour or two to myself, but now NOTHING.
That is why I usually get up between 3-4 am every day, for quiet time.
He is a Vet and VA is going to send me more help:) His kids live in KY and really they dont want him living with them, and really dont want to put him in a home but if his memory gets a lot worse, I can NOT handle this. Not fair to me .
I have been married for 40 yrs, I feel so sorry for you only been married for 4 years, dont know that I would have stayed if I had been in your position. If I was you I would like about trying to find assited living for her. Too much for you to take care of!!!
https://www.caregiver.va.gov/support/support_benefits.asp
It's not an easy road and it can certainly be a lengthy one. My spouse is also ten years older than me, and my circumstances similar to yours, with a previously active professional and social life so I can relate to how you feel. Dementia and Alzheimer patients can live way beyond what one would expect. My husband has multiple physical ailments and yet here we are ten years later.... It has gotten easier in some ways, where he is past the aggressive, angry, "I am in charge here, get the F out of my life" period. He's more mellow and child like in some ways, but also leaving me less and less comfortable in absenting myself just to make a quick grocery run or other errand because he can't remember from one minute to next what I said - which is where I wish contractor would relax their 4-h shift requirement. And of course no more overnight trips without 24/7 presence of an aid on our dime. Do what you need to do to care for yourself, something that is not as easy to do in covid days. Wish you the best.
Thank you for telling us about the beautiful way you are moving through life's journey.
I would suggest you find a caregiving support group and attend regularly. In your case if she doesn't have memory loss, I would suggest a support group for illnesses that are NOT for memory loss. If she does have memory loss, find a support group strictly for memory loss. There will be differences to learn from these type groups that will help you cope, help you find ways to cope, and how others' handle situations. If you're not in upper years, find an advocacy group by asking your doctor or some other agency to help you find a caregiving support group. If you are senior, start with your Area on Aging in your State or County, they are resourceful agencies to help and lead you to some kind of help for yourself, and for how to care for your spouse.
If you can afford it, look into volunteer caregiving support, or individual people who are caregivers for less $$ than a caregiving company. If you are able to leave her for a while, go to an afternoon movie, (if theaters are open now during Covid), go to an afternoon lunch; golf, find a horseshoe group or pickle ball group to play or some other activity. If you are truly in love with your wife, you will find great help in your caregiving by the support group or getting a friend or relative to give you some respite once in a while. If you aren't happy with the situation and want "out" then see your lawyer. If you keep on caring for your wife without "support" and you are unhappy with your life as that is, you will only wear yourself down and get to hating life in its entirety and hate your wife as well.
Ask your doctor to recommend some type of help you can get, and initiate legal activities to care for her and you. Some of the Area on Aging departments of counties/State also have some lawyers doing pro bono work for individuals who can't afford attorneys. Good luck to you and your wife. Take care yourself as you take care of your spouse. Pray for guidance.
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!
pandemic. I am beginning to feel that I will have to take the risk and hire someone just to maintain my sanity. Good luck
I know the concern regarding COVID transmission is a part of our lives now and well into next year. Ask all visitors to wear face masks over their mouth and nose. Try to visit outdoors or in the largest room with good circulation. If you have a room that can be closed off from the rest of the house (3 season room, family room, game room...) consider this your "social room" and only have visitors in this room and 1 bathroom. Use high quality filters for your furnace or a/c. Wash high touch surfaces like counter tops, table tops and handles after visits and before preparing foods. Wash hands frequently, Ask visitors to use hand sanitizer or wash hands when entering your home. With those precautions, risk of contracting COVID will be minimal.
Caregiving is not for everyone. Might it be possible for you to go back to your old company? Would you be able to hire a few hours of help for your wife at home? If not, I urge you to consider finding a job, getting out of the house, and re-establishing balance in your life. Sadly, many caregivers die before the ones for whom they are caring.
Your wife has serious illnesses, which are chronic. Certainly it is hard on you watching her decline in such a short time when you should be enjoying new-marital bliss. Unless you make some changes - and get your wife to take responsibility for her own health - you may be looking at caregiving for another 20+ years. Ask yourself if that's how you envisioned your life. Again, many caregivers die before the ones for whom they are caring. It's a real risk.
You are burned out and it's understandable. You have to make a decision. Either you get someone to care for your wife or you put her in a long term facility.
You need a life too. You need to care for yourself, physically and mentally. You need to do what's best for your wife and yourself.
I admire your dedication in trying to do it all, and not at all surprised you are feeling frustrated and lost. Please, for the sake of your own health and sanity, get someone to help with her care. I find it hard to imaging getting by with just 3 hours a day of respite as someone suggested. And sleep is essential to maintaining your own health, it's not good to short yourself on that.
Best of wishes to you.