I live with my dad with dementia and my husband with hepatic encephalopathy. Neither accepts my role as caregiver. This gets me down. Any advice?

You've got some great responses. Please take time for yourself. One thing you failed to mention was your economic stance. Please do not share it, but I know it plays a role in your next steps, which are important when it come to your mental and physical health. CDC released a study based on roughly 5000 surveyed and move than 40% of the caregivers suffered from mental health issues due to their need for respite.

So money matters, where do you get the help? Google and even eventually visit your local senior services. Share your story and see if they have services to assist you to have a few hours a week for yourself.

And please start to think of next steps. One day, your husband and your father will need more care than you can provide. So start looking early, so you can understand the costs, the documentation and location of places that may be a good fit for your family.

Thank you for being a caregiver. It is not an easy job. When you feel low, just breathe, take a break, regain your strength and then return. You are not alone.

Stay Inspired,
SB

Caregiving is lonely and detrimental to your health. What would happen to them if you had a heart attack or were diagnosed with breast cancer? It’s time to start planning for their advanced care. Do not get snagged by guilt or feeling like you failed or to their objections. If you are worried about how to pay for their care, consult an elder law attorney. They will be very helpful. Good luck!

Freddynb: Perhaps both your father and your husband require a higher level of care than you can provide in the home setting, e.g. managed care facility living.

Wow! You have a lot on your plate. Here's another task :( Make a plan for a time when you may not be able to handle it all by yourself. Don't try to be a superwoman! I'm glad to hear that your husband is now better. Did his doctor say how likely another incident will be? Is 911 your back-up plan for your husband? Make sure that you and your husband's paperwork is in order. You both need to set up powers of attorney for medical and financial matters, have living wills with your advance medical directives and wills, if you have assets. Speak to your husband about his preference for care, if he is no longer able to care for himself. Does he want to stay at home with in-home caregivers? If so, make a plan for additional caregivers, as needed. You don't mention your husband's age. Is he willing to move to an assisted living/memory care/skilled nursing facility? The advantages of facilities is they have skilled staff, people their own age, they organize ability-appropriate activities, etc. Is your father willing to move to a facility? Much depends on his finances. If needed, connect with a local social worker to discuss what your father's (and your/your husband's) options are, given your finances.

What I have learned through my care giving journey, my husband passed from ALS and now 4 years later my father has ALZ, is that as hard as it is at some point you have to decide between their life and your own. They will pass away and you have to have a life to go back to. Always keep that in mind when you make care giving decisions. Care giving can be rewarding but it can also ruin your life. It doesn’t mean abandoning them. It means deciding how you can help them while still maintaining a life of your own. Sometimes that means placement for your loved one. You are entitled to life your life.

I totally feel for you . My (late) husband had hepatic encephalopathy, it was absolutely insane, looking back I almost don’t know how i survived those years. The peeing on the door , disappearing , trying to drive , dumping all contents out of kitchen drawers , things no one would believe had they not witnessed . It’s a very ugly thing. My husband was terminally ill from 2008 to 2015, and I hate to say it it felt like a lifetime being sucked out of me. I had to have a friend come live here so I could go to work every day, he would take care of him I slept on the couch all these years it was an ugly cycle. The only hope I can give to you is to remember this is temporary, that was my mantra for many years. Now I am dealing with my 90-year-old mother who is on oxygen as of late, she is terminally ill but refuses to accept that. She is very income limited and I have had to get her in section 8 housing, access food stamps, and now I HSS for caregivers. She’s gone through a couple, now without a Friday Saturday Sunday person so I have been going there on my days off , she is a lot . I must give an ultimatum soon - if she can’t find caregivers that can tolerate her she’s going to have to go into assisted-living which I know she will never do. Ii wish you the best with your situation, sometimes we just need to vent . Is your husband on hospice ? If so there is sometimes “respite “ available . I used to send my husband to a nursing home for a couple days every now and then through hospice care- it was a lifesaver .

I sometimes feel the same way. I am living with my mom, who is in the early stages of dementia, has COPD, Emphysema and Fibromyalgia. My brother, who is disabled with Addison's disease, Fibromyalgia, and Thyroid disease. I am also disabled with Spinal stenosis, hip problems, arthritis in the hip and ankle, a blood clotting disorder, fibromyalgia, and Migraines.
I am the Primary caregiver and my mom has been very argumentative lately. I am doing my best to make her comfortable and give her the care she needs but sometimes it is very frustrating and we end up in an argument. Our latest issue is the medication and getting her to take it correctly. She still wants to control the meds and insists she is taking them correctly but my Brother and I know she is not taking her medication correctly. I was giving her the pills to her every day, And she would tell me, where Is my medication so I decided to order the pill pack. She took the little packages from the box last month and did okay. This month she has been confused, so now I have to make sure I give her the packets and that she takes all the medication. I Am exhausted.

Have to laugh at your dad's awesomeness being able to give on his own. ❤

How do they not accept your role as caregiver?

Is your husband ready for hospice care at this point? You don't mention what stage of hepatic encephalopathy he's currently at, but he may be eligible. If so, that would give you another level of care at home that you're not currently getting; ie: bathing, an RN coming in at least once a week, meds, a hospital bed, etc. With such a disease at play, you ARE just waiting for the next incident to happen, really. Is he compliant with his meds and treatment routine? I'm not sure how you CAN handle 2 patients with this level of need going on. I don't blame you for feeling lonely, as we can rarely depend on family to help us, and never on friends to pitch in with THIS level of care that's required, let's face it. When do YOU get a break? What about YOUR life and state of mind?

Have you considered placement for either or both of your loved ones? Neither dementia nor liver disease get better, only worse. I think it's physically and emotionally impossible for one person to handle ALL of this alone. You say you have a caregiver coming in for dad on weekdays, what about for DH? As his confusion level worsens, his care level will increase as well. Consider placement or hiring another caregiver for him, too.

I'm sorry you have all this to deal with. Wishing you the best of luck getting some respite from all you have going on. Come here to vent any time, too, it's a good place for support.

OMG! You are an angel for going like this for so long. However, you are correct. You need to decide what you are going to focus on, your husband or your Dad.

Either way, either of them need a lot of care.

You haven't said how bad your Dad's dementia is. You could go the long-term respite route with Dad, to help you get clarity on your husband's future. If your Dad is in early dementia, you could have him go to an Assisted Living Center temporarily. At early dementia, he can still make friends and live almost a "normal" life.

As for your husband, what does your doctor say?

We are here. Just keep us up to date with what is going on. Sometimes it help you to get clarity on your situation when you just start telling people about it.

You can do this. Good luck!

Thanks so much. Appreciated getting responses. Needed an injection of new thoughts on my situation. Sometimes I just can’t see what is going on.

It may be time to place your husband in LTC. I read that hepatic encephalopathy is caused because of the liver. I would think by the time DH got like this, his liver is pretty shot and the toxins in his brain are also effecting his body and death is eminent.

If you don't want to place him, maybe time for Hospice? You can't do it all. His next outburst may be injuring you or Dad.

Whether you choose to act on it or not, do some research on residential care sites, adult day care, and respite care in your immediate area.

Many of us here have dealt with similar issues, and it sounds like it’s time for you to realize that No, you CAN’T DO IT ALL. and most important, you should NOT think you can!

Hopefully, you have their legal paperwork and their financial paperwork up to date.

Right now, you absolutely ARE “the only one at the house with marbles”, and you CAN’T “handle it all”.

Just taking a look at whatever resources can be available to you can help YOU feel better. Do a Google search. See if there’s an Office of the Aging in your town and/or county. If either of these folks were in service, contact the VA. Even your local board of health may be able to direct you.

Don’t expect yourself to do a job that would be difficult for three people. Do what you can, and treat yourself to little treats as you work towards finding better solutions. YOU’RE IMPORTANT TOO.

Keep coming here. We listen.

When you are caring for someone, (or more than one) that have conditions that will not or may not get better and the person will continue to decline it is a case of "just waiting for the next incident" It is just a matter of how intense, how critical the next incident is. That is what is the unnerving part of caregiving...the not knowing. The question then becomes how catastrophic will the next event be.
I think you have enough on your plate caring for your husband. (You do not mention outlook for him, treatment or stage)
Is it possible that your dad would do well in Adult Day program so you can have caregivers there longer/more often if he is not at home every day, you could have them in the evening and weekends.
Or
Would Memory Care be an option?

You will find that caring for someone your world shrinks. So your small network of friends becomes smaller. You need to keep the net open so to speak. Make time for them. Make plans to go out for lunch or just chat. If they have their own problems they will also appreciate a chance to get out and chat.