Normal to just say no, I'm not doing this anymore?

Burnout for sure.
It sounds like he does need to be in a facility.
You should not feel guilty. Unfortunately, all this had to happen so that you could get 1 week of rest.

I think you find a faculty. Put him there. That way if/when you do visit, hopefully it will be a more happy visit, time.

Don't believe the staff when they tell you that burnout will go away once you've had some rest. They're lying, and besides, what do they know about your trials and tribulations? They get to go home to a normal life after their shift, but you don't.

Have a talk with his doctor (not the staff) and explain that you are not physically or mentally capable of taking care of your husband. Then leave and refuse to discuss it any more with the hospital people or your husband. This is a good time to zip your lip and not show up all the time.

Some of us are not cut out to be caregivers and that's okay! I recommend a Bermuda vacation for you. It's far away from everything, and husband will have to find someone else to berate. Trust me, he will. Trust me again, and his caregivers in wherever he ends up won't put up with it. Send him a post card, and have a great time!

Don't waste energy on lists. Just give him 3 basics: Get up out of a chair, clean himself and walk. It's like dealing with an infant in a man's body. That 16 year age gap is now haunting you. Say when he was 66 and you were 50, life was great. Yet if he's now 76 (and helpless)and you are 60, you aren't going to like incontinence, diapers, trying to lift him and ruining your back. Why would he even EXPECT you to do that? Or have the nerve to complain about it? You have at least 16 good years left, and you need to make sure you get them.

Tell the Hospital Social Worker you cannot care for him at home, period. Don't listen to their false promises. He is now a "two person assist" to get him out of bed, bathe, or into a car. You have no room for a hospital bed, medical equipment, or anything he now requires. You cannot do it all yourself. It will take hiring several people and if he isn't wealthy, will cost a fortune. Tell the hospital "he is an unsafe discharge." Repeat it 100 times. They will have to find a facility to take him. Don't fall for their stories how you will get help. Home health is a RN coming in twice a week, for maybe an hour. You will get so stressed out you could easily die before he does.

You will need help with constant laundry, shopping, cooking, cleaning and trying to lift him or please him? No way in hell. You will hurt yourself and then who cares for him? No kids are mentioned, so you are stuck with this yourself. If he is that helpless, he needs to be in a Skilled Nursing facility or Long Term Care. You need to find out the cost for the big wakeup call.

When he starts begging and whining, blow him off. Tell him "you need to go to a specialty place to recover and get back to being able to move." Meanwhile, see an elder lawyer about dividing your assets, if he needs to get Medi-Cal. You can stay in your home and keep a car.

If you are already burned out enough to want him dead, you are in no shape (mentally or physically) to be his 24/7 caregiver. You need his doctor to give you a solid diagnosis and also a prognosis. You need to know exactly what is this disease, illness or condition that has made him so helplessness, so suddenly? What are the chances he can improve (if any)? There may be none.

Start serious planning, since your life is going to change forever. Don't go visit every day, call instead. Wean him off you being his 24/7 slave. He needs to get used to being in a facility. Get your financial situation figured out, and what you will be able to do (or afford).

Prepare yourself for living alone. Life as you knew it is gone. I'm sorry you are in this predicament. Nobody expects this type of thing to happen. But you have to face it and figure out a plan. That includes making sure he has his estate documents in order.

I wish you luck in getting this situation on the right track.

First of all, the tough love: you are very understandably burned out and exhausted and it's affecting your physical and mental health. But the resentment and "wishing he would just die and get it over with" is not appropriate. If you were the same age as him you might have a little more understanding of this because you probably would have had some health issues yourself that he would have helped you with, and you would have some more empathy.

But, to address the situation, talk with his doctor about some medication to calm his anger and agitation, so you won't be subject to the verbal lashing-out anymore. This is for both of you. It's something you shouldn't be subjected to, but it's also a terrible mindset for your husband to be living in. This can be addressed with medication.

Second, as Dawn and Fawnby said, don't rely on the homecare promises. It sounds like his needs genuinely outstrip the ability of one person to address. So look into get him placed into long-term care, whether that is assisted living or skilled nursing. Tell the discharge planners that he cannot safely come home.

See an Elder Law attorney ASAP about how best to protect and possibly separate your finances so that he can get the care he needs in a facility but without leaving you with no resources to live on. Bring a list of your finances. You may need to pay for the facility at first and then transition him to Medicaid. I assume he is retired. How about you -- are you also retired, or still working?

Start looking for facilities and find out their financial requirements, so that when he is ready to leave rehab, he can go directly to one, instead of coming home and then having to be moved, which is much harder on everyone. You may find a place that is closer than the three-hour round trip you've been having to make.

While doing all this. take care of yourself. Rest, sleep, and whatever else you need to refresh yourself. Unfortunately you now have a new normal ahead of you. Take it step by step. Let us know how things go.

Incontinence isn't necessarily the problem, my dear uncle suffered with this after prostate cancer and you honestly wouldn't have known. It's his immobility that makes everything else impossible, plus his attitude that it's okay to ask you to become his 24/7 nurse. If he can get himself up and walking and look after his own continence issues you could conceivable return to some level of your previous life, if he's unwilling or unable it's a deal breaker. There's truth to the saying getting old isn't for sissies, right now you are both facing the realities of life's limitations.

The OP replied she is in Canada. Ages would be nice

Natalie, most of us on this forum are from the United States meaning our health system is nothing like yours. We have the option when a LO is in Rehab to transfer to Longterm care. Thats either private pay or Medicaid, which is income based, if the person meets the income criteria. As said, we can declare "unsafe discharge".

Seems like Canada and the US have one thing in common, the Hospital staff try to get you to take the patient home. You have a long list...I don't think taking him home is an option now. You just can't care for him help or not. The facility you mention seems very nice. Tell them now, when Rehab is done, he needs to go to a Longterm care facility.

Hi Natalie,

Thank you for sharing this so honestly. Caregiver burnout is real, heavy, and far more common than many people are willing to admit. Feeling exhausted, resentful, numb, or overwhelmed doesn’t mean you’re failing or that you love the person you care for any less, rather it means you’re human and carrying more than one person was ever meant to carry alone.

It’s important to remember that caring for yourself is not selfish; it’s necessary. Doing things that seem so small, yet when done they provide us with the breaks that we need. Start by taking a short break, asking for help, setting one boundary, journaling or allowing yourself to rest without guilt will make a difference.

You deserve support just as much as the person you’re caring for, and your needs matter too.

If you’re feeling burnt out, please know you’re not weak for feeling this way, and you’re not alone. Acknowledging the strain you’re under is a powerful first step. You are doing the best you can in a difficult situation.

Below I have provided you with a few self-care tips that will help you to recover and feel better in a holistic way. Companion services are not solely for the sick, they are for people just like you and me.

Small Support:
1) Help with errands, and meal planning/ preparation
*A healthy diet affects how we feel both physically and mentally

2) Have a companion come and sit with him or you, or take him or you to appointments.

Reclaim Your Time: (Beyond A Spa Day)

1)Adequate Sleep; do not allow caregiving to interfere with your sleep. Make sure you get the 8 hours + of uninterrupted sleep.

2)Create a schedule for eating and make sure that your meals and snacks are healthy and provide you with the nutrition that your body needs. Allowing a caregiver to plan / prep meals for you and your spouse will help to alleviate a lot of pressure you may be experiencing. And Drink Plenty of Water.

3)Get outside. It can be difficult to do especially when we are mentally drained. However, this is where a companion can come in hand specifically for you! You may want to take that dance class or join a chess club but don't want to do it alone. And perhaps you don't want to do these activities with someone you know well because you don't want to spend the time talking about your spouse. Hire a Companion Sitter for yourself for a day or more per week to join you in these activities.

4)Support groups are helpful. When you join them you will find that you are not the only caregiver/wife who is experiencing resentment towards their spouse. These groups provide us with the opportunity to express ourselves in a judgement free setting. Participants often find that other caregivers will recommend either their personal support or tell you about other resources available in your community that will help you to continue to build your new healthy "Natalie focused" village. Which in turn (if required) will allow you to be at your best while caring for your husband.

5)Reframe your Role; you are not "just" a caregiver you are a woman, a wife, a parent (fur babies included), a person with dreams, limits and needs and you are worthy of receiving the assistance in life that you need to be healthy and happy,

You will find that by implementing these few habits in your life will help you to show up more patient, compassionate, and present not just for your husband but for YOU! Remember, we can not give what we do not have..

Lastly, utilize this space as it does provide a variety of information for you regardless to your geographic location.

I hope this has helped you!

Kind Regards,
Tiffany Hooker
Owner
Bright Horizon Home Companion Services LLC

Yes it's totally normal to say no I'm not doing this, as long as you make sure he is placed where he will get the care he needs. It's exactly the same as if he needed surgery you would say no I'm not doing his surgery alone in my house, he needs to go to a hospital with a surgeon and a medical team. See how normal that sounds? You're not a surgeon and you're not a multi-person care team.

And if you search around on the forum you'll find a topic titled something like "is it normal to wish someone would die" and yeah, that's normal too. As long as you don't end someone's life yourself, or hasten their end by taking them home and then neglecting them, go right ahead and feel your feelings. Your feelings are crying out to you to take care of yourself before it's too late for both of you.

So here's the follow up. After the last hospitalization a proper release plan was not done. When I wasn't present, my husband refused the advice of the occupational therapist and insisted on being released to go home instead. And the doctor agreed! When I arrived the day he was released I was presented with a fait accompli. I protested I didn't think I could cope, the staff told me they would refer me to homecare as they helped me get him in the vehicle. After that we got denied homecare. The intake worker who denied us care just plain lied. For example she said because my husband does not have dementia, he doesn't qualify for care and because I am able to leave him alone for a few minutes I am not a 24/7 unpaid caregiver and I am not entitled to respite. None of this is true.

I kept escalating my complaints and lo and behold I am now dealing directly with the director of homecare and I have a brand new intake worker assigned who is ready to get things rolling when he comes home. My entire horrific experience of trying to cope for three months alone was the result of "micommunications" and they are so very very sorry. It will be investigated as a critical incident and I will get answers as to why this happened. Everything will be fine. I can likely get nursing care in three times a week and physio therapy at home and respite and and and.....

I DO NOT BELIEVE IT!

The system screwed me around once already and sent us home to unsafe and difficult conditions, burned me out, left him a T12 stress fracture and a partial compression of L3/L4. The doctors have still not figured out his anemia issue though he has had a CT, an MRI, ultrasound, scope down the throat and another up the other end scheduled for Tuesday.

He is no longer in pain. He is getting physio therapy twice a day. They have been giving him these baths where they put him in a sling and lower him into perfect temperature water and they are slathering his skin with ointments and there is always an aide at the push of a button. He has his computer and he's back at working hard on his writing and publishing. He actually seems quite happy though he claims he misses me and he misses his dog. The staff all seem to like him because he does not have dementia and when he wants to be, he can be very charming and entertaining. He calls it being nice to the help. And he is.

It is obvious to me that I did not and cannot give him the care he needs at home. It's also obvious a wife is not given the same consideration as the help. I was so angry with him when I found out about how he got himself released without involving me in the decision that I told him I was cutting the visit short and leaving because I needed to process this and have a good cry far away from him. [Not entirely fair to be so angry at him because the staff and doctor who let him go without involving me bear some responsibility and he didn't start getting nasty with me until exhaustion made it difficult for me to do what he needed but he deserves some blame for the situation.]

I have asked the staff to enter in his file that no matter what he says, I do not consent for him to go home without a full release plan that I have been consulted on and agreed to IN ADVANCE. Any release will have to include the social worker getting approval with specifics for homecare set in place and physio/occupational therapy having met with me and got my approval BEFORE he leaves. I will not take him home even if he pulls the AMA thing again. If he pulls the AMA thing again, and they release him without my approval and they let him get away with it, I will simply leave him in the entryway by the security station. and he becomes their problem. I told him the same.

No rush ahead of me to decide which way to go or what I will and will not agree to. He has been informed that after medical gets through with him, he goes to rehab for at least two months before he can even think of going home.

Natalie,
I live in Canada as well and my husband also much older than me with advancing Parkinson receives all the care from Homecare.
Actually, at this time as he will only become worse his case worker concentrates on helping me I.e. prevent burnout, so I get 3-4 hours including weekend and evenings of respite. He is also entitled to getting help mornings/ evenings with dressing, hygiene etc.
He does not even need that yet but it was approved. Also because of faster progression he was approved for AL, only $2400-2700 per month, but decided to go private.
He does not have dementia so did discharge himself from hospital as well, although with my consent, but I don’t have to help him much yet and the same as your husband he is deemed safe to stay on his own.
I am all for preventing disaster and either injury to both, hence decision to go to AL, which is going to be finalized this week.
Next month he will go to rather nice AL as he will get worse.
And as you know, here we don’t need to split assets, not one question about mine or even his, only his income matters, but not all of it.
Anyhow, I think you need to have serious talk with SW, his case manager, you were just somewhat unlucky or overlooked.

Without dementia, your husband does have the right to make some decisions for himself. So look into private-pay options for both in-home care and facility placement for him, and evaluate your finances for how to pay for them, to supplement or take the place of whatever homecare you can get provided through the system. You don't have to do all this yourself! Hire people to help if and when he ends up coming home.

I agree with your stress and anger over husband weaseling his way out of the hospital without consulting you. The "miscommunication" excuse doesn't wash either. I'm glad to see a turnaround update. The Rehab facility sounds excellent. Did you ever find out his official diagnosis for the sudden change he had in October that put him in the hospital to begin with? That would be my main concern.

You surely couldn't put him in a fancy sling into a therapy pool at home at all! Or give him all the therapy they are doing, since they are medical professionals trained in these treatments. He sounds like he's doing much better, despite missing you, his home and dog.

You need to stay assertive and make it clear you are to be notified when his treatment plan is updated and it must be cleared with you. I'd be a bit concerned if once he's out of Rehab (and looses all the attention and effort he's getting from staff) he may slide downhill again?

At least you aren't desperate and overwhelmed like you were. But I would still be very suspicious of the entire situation and who calls the shots. I'd get a notebook and start keeping a daily summary of what happens, names, dates, etc. His Doctor needs to give you a solid "official" diagnosis, his treatment plan, and his prognosis...and if his incontinence can be corrected? You want to hear it from his Doctor, not second hand from the nursing staff. Jot down his Primary Care Physician, phone number, his Nurse/Assistant and her number, and his Medical Portal website. Find out who is his Specialist, his Assistant and her number too! I'd want to talk directly to both of them about what exactly is husband's main issues, diagnosis and treatment plan. This is so critical, I cannot believe you haven't been told this. Bring your notebook with you when you visit, too! Jot down notes for future reference. You'll be amazed at how much you forget when you drive home!

Husband's overall improvement is impressive, but the incontinence is not. That is expecting way too much from you.
I wish you strength and clarity in dealing with this situation.

It's common for caregivers to feel as you've described yourself feeling. It's also a warning sign that you should not be taking care of your spouse at home. I don't think you're going to "snap" and hurt him. But if something were to happen to him when he's at home and the circumstances are suspicious, anyone to whom you've conveyed your feelings and thoughts about wishing that he would die soon might share their concerns with health care staff, law enforcement, or adult protective services workers. Please do whatever is necessary to keep both of you safe.

Natalie, based on your responses below, I think it's time to just divorce and be done with it all. Life was nice when he was healthy but at this point neither of you seem to have any respect or consideration for each other's circumstances. Your state of rage is not something you should have to live in, and it's not realistic for your husband to expect to come home and resume life with you as it was. Trying to live together in your home won't be a safe or healthy situation for either of you.

Oh, No, NatalieKim, this will not be fixed by having help with home care.
You are already overwhelmed and burned out after 4 months. Believe me, this could go on for YEARS! And, it's not going to get better or get any easier. It will only get harder as he continues to decline and lose any abilities he has left.

I know you are in shock. You never considered this. You don't know what the future holds, and you have medical professionals trying to convince you, "You've Got This". You Don't Got This.

I know you love him and you feel emotionally conflicted. Being a hands-on caregiver 24/7 at home is not the only way to love and support a spouse who needs professional care! Only you know your limits. You already know you don't feel you can do this. And you are looking for validation and support. I support you in knowing what you can and cannot handle. There is no shame or guilt in recognizing when your loved one's needs exceed your capacity.
Your husband tries to talk you into handling everything yourself at home. That is wishful and hopeful thinking on his part. Of course, he'd like everything to go back to the way it was. It is not. It never will. He is aging and weak and there is nothing you or he can do about it. You can both be sad about it, but it is your new reality, and he now needs to be cared for 24/7 by a team of professionals.

After reading your follow up, I think the hospital or rehab staff let you (and your husband) down, and unfortunately put you both in an unsafe position which neither of you was prepared for!

I'm so sorry you've had this experience. You are understandably frustrated, but you are placing unfair blame on your husband. He wasn't prepared for any of this either. He just wants to go back home and have everything be ok. Unfortunately, his current condition precludes that. You both need to take a deep breath and accept that your lives have taken a dramatic and unexpected change.
You will have to make hard decisions to do the best you can under the circumstances.

"We had 37 really great years and he was a wonderful husband/lover/friend/companion. It's really hard seeing his decline when I have good years left. I went into the relationship knowing this was the likely outcome but it is harder than I thought."

Well, that says it all, doesn't it? After just four months you're ready to be done. Yes, they were four extremely difficult months, but you could have hired help. You want to get Caller ID so you don't have to talk with him You don't want to visit him. As I mentioned before, if you were closer in age, you'd probably have more empathy because you're likely to have had some challenges of your own that hopefully he would have helped with. But you're in the situation you're in, which is scary as well as frustrating.

I agree that you can't count on what the medical staff is trying to convince you is possible if returning your husband home. Even if it was, you would not be relieved and welcoming him home. So don't make the mistake of accepting a return home with you there, no matter how much the staff tries to persuade you.

I don't know what your finances are, who owns your home (one or both of you) and what various laws are in Canada, but while your husband is still inpatient, take some deep breaths, calm down, and start thinking through options.

Does your husband have a right to return to his own home if the doctors say that he can? If so you may need to prepare to move out, and make it clear that he'll need to hire help in addition to whatever homecare is provided. If you get to have the final say, prepare to be adamant with him and the medical staff, and to make alternative arrangements for where he is to go. Or maybe the house belongs to the two of you jointly, in which case you might need to get a lawyer and negotiate who stays and who goes, or sell and each of you move somewhere else, separately. (Again, I don't know how any of that works in Canada.)

You have at least two more months while he is still in care, so please take care of yourself and try to get the anger under control so that you can make realistic decisions for both of you.

Well, if you needed your appendix out, you would seek someone well trained and licensed in doing just that. You wouldn't attempt it yourself. Same here. You are doing the work of an entire trained nursing home staff. Time to look for your husband a nice place to live where people can take care of him. It's not wrong to realize this is too much and you aren't up for it. That's perfectly normal. I'm sorry the staff lied to you. They most likely knew you would not be able to continue 24/7 care, but tried to gaslight you into thinking it was possible after a rest. Once he gets placed, take yourself a nice long vacation, pamper yourself and then come back as the loving wife that visits as much or as little as you see fit taking him treats and telling him how much you care for him. Your outlook will change when you are now the visiting wife and not his home health care worker.

From what I have read many times on the Forum is that once your loved one is in the hospital you must refuse to take them home, tell the hospital case manager he it would be an unsafe discharge. You have to keep saying this over and over and refuse to let him go home. I think they have to have him placed in a care facility at that point. Someone else will have to chime in here with more details.

Natalie, my suggestion (yet again) would be to look at the money. You may need to separate your finances to protect yourself and your options. Your husband (with a bit of pressure from staff) is saying that he wants to return home, clearly on the basis that you will be there and will give him whatever care he needs - free. Your best bet is to move out, at least temporarily, so that neither he nor the staff can assume lots of free wifely TLC. Find some cheap accommodation, and get your finances clear.

Regarding the reaction ‘that says it all’ about the age gap, it is bound to come up, and it’s not helpful to let it anger or hurt you. One way to deal with it is to say that the deal was not for you to be ‘the nurse with a purse’. Stress the 37 years together, and his current ‘behavior’ – which is now ‘whining, never being satisfied with how I do things, and verbal lashing out’. One thing that he took on with a younger wife was someone who can stand up for themselves. There were just as many benefits for him in having a younger wife for 37 years, as there were for you.

Natalie, my suggestion (as so often) would be to look at the money. You may need to separate your finances to protect yourself and your options. Your husband (with a bit of pressure from staff) is saying that he wants to return home, clearly on the basis that you will be there and will give him whatever care he needs - free. Your best bet is to move out, at least temporarily, so that neither he nor the staff can assume lots of free TLC. Find some cheap accommodation, and get your finances clear.

Regarding the reaction ‘that says it all’ about the age gap, it is bound to come up, and it’s not helpful to let it anger or hurt you. One way to deal with it is to say that the deal was not for you to be ‘the nurse with a purse’. Stress the 37 years together, and his current ‘behavior’ – which is now ‘whining, never being satisfied with how I do things, and verbal lashing out’. It's his assumptions of entitlement, not dementia. One thing that he took on with a younger wife was someone who can stand up for themselves. There were just as many benefits for him in having a younger wife for 37 years, as there were for you.

Another update: Spent the day with him. Talked about a lot of things. He feels very bad about getting so angry with me and his part of this mess. He wants to go home but he is very concerned about going home and how I will cope and how care will work out. I was surprised to find he has as many reservations about this as I do. He has decided unless he is substantially improved after rehab he will stay in care. He said I have been a delightful loving wife who has brought him nothing but joy and I should not feel I have failed him. His body is what is failing us. He will do his utmost to come home in a decent condition so we have more time but it might not happen. So he has made the decision for me.