How do you handle bad days when you're burned out for caring for someone for an extended period of time?

It's my husband who has dementia. He's 82 (I'm 8 years younger), has what I call a very "commanding personality" and can be difficult, to put it mildly. I find myself torn between loving the person he used to be, resenting the current situation, and feeling guilty for the resentment. So many times I feel like a prisoner because traveling and socializing have become problematic due to his increasing reclusiveness and unpredictable bad behavior. Fortunately, though, he has not reached the point where he cannot be left alone, and I do manage to take care of me, too -- gym 6 mornings a week, lunch with friends/former co-workers, relationships with children/grandchildren/siblings. And that BIG glass of wine at the end of each day definitely helps!

First of all, you have every right on this earth to have your life back - why shouldn't you? This is your time. She lived her life. And why do you feel you owe her an apology - for what? She has medical and mental problems and probably acts out in unacceptable ways. I'd blow up too. Forget that they can't help it, you are human and should not have to put up with that. And the fact that your siblings don't help should tell you something. YOU must take the bull by the horns and make arrangements to either have a caretaker take over or she goes into a facility. No if's on that issue. Just do it. When the negative behavior of someone you are taking care of causes a toll on you mentally, physically, financially, etc., then you are no longer obligated to do anything for them. End of statement.

Please see if you can hire a caregiver to come in 2 days a week to give you a break. I was a caregiver to my father for 3 years before he passed away. It was rough at times. However, I had to find the money and hire a caregiver which made things much better. I also sent him to a nursing home under the respite program. My sibling was like why did you spend that money there when there was a sibling. However, sibling never came to help do anything and if she did come a day to relieve she wanted to be paid. I could not afford to be paid but she wanted too. I was spending my saving helping my parent as he had limited income. However, the respite home made a deal that if I purchased a week, she gave me a week free. That was the best two weeks to get my life back in order. I knew he was being cared for and I could take care of me. If you do not have family support, or financial resources, look and see what a place for mom can provide. They have people that will help sit and do some tasks so caregiver can get a break. You are being stressed to max when you find yourself getting short tempered or angry at your loved one... Break time... needed. I wish you the best and I hope you find a solution soon to get you some help.

If you can’t handle the stress, you can’t handle the stress. That’s no crime. I was in a similar situation, finally the siblings agreed my mother needed more care and stopped fighting on it, mainly because I held a family meeting and said “ you help or she goes into an independent living fact, “ funny how fast that ILF became a reality.
They still have a “ version “ of responsibility , My husband and I do all the medical, including insurance and all dr visits , etc, care of the cat, 90% of follow up with the (now ) ALF including finding the place , ie when she needs TP after she throws her TP away because she’s positive it is wrapping paper, get the 4am phones calls that the cat is “starving” ( not, a woman comes in daily to feed the cat, clean litter since my siblings refused to do it when they visit) etc etc . My brother comes once a week for an hr and my sister writes checks for her credit card and rent and takes her to the hair dresser every three weeks and goes to lunch once with her most other weeks. I’d be dead if I still was doing it all ie cooking for her , running around for her etc, what I’m doing now is barely doable. Moral of the story:
its not going to change for the better, it’s going to get worse. IMO time to get professional help either via a facility( best imo, best medically and socially,) or get caregivers to come . It takes a village to raise an elderly dementia patient .

There are MANY of us here who know ALL about that 'whine of the day!' Venting here can help, but keeping your cool can be difficult. You do have to recognize when that bad day stress is getting to you and KNOW to step away. Even if mom needs something, it can wait a little while until you can cool off. Take a breather. Understand we are all human and have our breaking point, so if you do yell, certainly apologize and don't blame her (even if what she is saying or doing leads up to this!)

That said, what is mom's prognosis for the hip? Is she getting any PT/OT for the hip? Dr CAN order in-home PT/OT. While healing, adult day care is not likely to be an option, and respite care in a facility may or may not be doable, but you can start making plans for the future, near and far. The Parkinson's and dementia will progressively get worse. The hip - maybe better, maybe not, you probably have a better idea about that than we do. If you don't think she is healing well or working to get back on her feet, then I would absolutely consider finding her a place to live.

We also don't know her financial situation - has she any assets that can pay for a facility (they aren't cheap!) If not, it might be a good idea to start exploring Medicaid. If her hip is getting better, she might be okay in AL/MC (although the dementia is mild now, moving those patients later from regular AL to AL/MC can be traumatic, so it might be better to start at the MC level.) If you don't think the hip will get better, you may have to consider NH/SNF. BTW, my understanding is that if she qualifies for Medicaid, it can also provide in-home help, freeing you up (I also have read they *could* pay you for being the care-giver, but personally I would opt for them to pay someone else to do it!!!) If she qualifies for Medicaid but there are no beds available, get on the wait list and have Medicaid cover in-home help for her. This will allow you some ME-time and lessen the burden on you.

As for siblings: If you haven't had any in-depth discussions with them, even if it is to just discuss options for mom, you should give this a try. Some siblings just don't realize or understand how hard it is. Those might get a clue if you enlighten them and *may* help in some ways. Others don't want to know and still others don't even care (until it is time to see what is left after the fact.) If you have already tried reaching out and explaining what is needed and they brushed you off, there is no point to stress out about this. You can't change them, only YOUR reaction to their lack of concern/help. There are also many of us in that same boat with you!!! Try to let any anger this causes you to go away - it doesn't help the situation, makes YOU feel worse and does NOTHING to them!

I vented all I had to say to my brothers in an email draft to each, but never sent them. They wouldn't get it, wouldn't accept it, so there was no point to sending them. This did allow me to say what I thought and how I felt and get it out of my system. I did feel much better afterwards and the longer the time passes, the less I think about the emails or my brothers. I know I can't really count on either one for much of anything, so why bother? Think about something more pleasant, not these selfish, boorish, know-it-all dummies! I tell people all the time that I think I got all the brains in the family!!!! ;-)

I'm sorry to hear your having so much trouble. I would like to help but I'm in the same boat with my 82 year old father. My mother passed away 2 years ago and she did everything. My siblings live in other states and "have their own lives". My husband and I do everything for him. He has had 3 strokes so, we are not comfortable letting him drive so my husband does all the driving and I do all his finances. Example of what my sister did when she came up to visit last month. My father needed to renew his license so, instead of backing us up about his driving she takes him to the DMV. So, now we have to take him to his doctor for him to fill out paperwork before he gets a renewal. I have POA for him and I'm still not going to let him drive though. We argue with him over things and sometimes it drives us crazy. But we do it because we love him and want whats best for him. He lives in his own home with his disable grandson which doesn't help much. We live just a couple miles away and people ask when are we moving in I say I can't because I will go crazy. We do our best and that's all I can do. At first we were so, stressed with no help from anyone. Our own health declined to the point were my husband had a heart attack but were doing better. We're dealing it's not easy. We try to make time for ourselves even if it's one day a week. I hope things get a little better for you. This website is great you know your not alone and people go threw the same things.

Do not feel bad. With dementia it will all be forgotten. These people with it can just push the right buttons at the wrong time. My mom can be quite the handful. Today I joked with co-workers about mom's favorite obnoxious phrases and envisioned a chatty cathy doll that would produce them when you pulled her string. Like "GET OUT" or "It's STILL MY HOUSE" or WHATEVER I WANT!"

It took me a long long long time to accept that my only sibling would not be of any help.

Call your local area agency on aging and see if they have a family caregiver support program. They may be able to provide some help so you can get out and have a breather.

It is important to get out yourself. Shopping, a class, dinner w a friend, anything to help you get some relaxing me time. Hire someone to stay w her so you have a bit of time. It will do wonders!

You need respite through an agency like Visiting Nurses, etc. Only then may you be able to catch your breath to carry on with your caregiving duties.

You are only human and as humans we occasionally have a bad day. However, your yelling at her is a sign that you are stressed by your situation. People have made good suggestions about finding some sort of respite help. Adult day care comes to mind one or two days a week. But in the meantime, look for strategies to lower your stress. Aromatherapy, music that transports you to a calmer or happier place, simply walking out of the room when you need to calm down, exercise, a hobby. Also, are you getting enough sleep? Then, apply as many of these strategies to your mother as well. Let the sun and fresh air into her room and aim to create a happier vibe for her. She's probably feeling stressed too.

Stop living with your mother.
You move out or move her out.
Do consider, if you do not take care of yourself, you wont have any energy - in any way - physical, emotional, psychological, or spiritual - to care for her, in any way(s) that is best for both of you.

Living together isn't necessarily the best care for her although you may have thought that when you decided to live together; do not be a martyr. You do not have to be a martyr. I don't know where you live. Often financial constants limit a person/family's options. Whatever you decide to do won't be easy nor initially feel good. However, you may very well save your own life and find a quality of life again - wake up in the morning and feel good, being in the moment, appreciating the beauty of the mountains, a tree, or the chipping of a bird, able to laugh again. I would encourage you to see a therapist and get some professional support. Know that your current situation won't get better as your mom declines. You will need to make decisions about the quality of life you want to live. We, here, ALL want YOU to find some peace, comfort and joy in your life.

I feel you. My brother and I have been taking care of my 92 yr mom for seven years. Yes we yell and I have had to walk out into the rain to keep from loosing it. Until I started being part of this forum i felt horrible. Now If I go off, I go off. In a min its over. Sometime she starts crying but that only last a min or two. Use to get really upset over that but I notice she gets over it faster than I do. So all the suggestions are good. Take some of them and just do it. For your peace of mind and her's too. I just keep praying from the moment I lay eyes on her until I leave. My fear is my God will get tired of me. Thanks for listening to me

There is a lot of good advice here. Please get some time for yourself. With caregiving, it never gets easier, only harder as they become more dependent ad their needs escalate. If your siblings don't help they have no right to participate in decisions about her care.

Look into Catholic Charities -- they have volunteer sitters who will do 3 to 6 hours a week and it's only $8 an hour, and you don't have to be Catholic -- they'll help any caregiver. They don't do things like change their diapers, but it will at least give you a little bit of a break.

My nurse practitioner gave me this "Caregiver's Bill of Rights" and told me to read it every day -- this part really jumped out at me: I have the right to
"to seek help from others even though my relative may object...
to protect my individuality and make a life for myself... "

https://www.caregiver.org/caregiver%E2%80%99s-bill-rights

Bless your heart for living with her. I live next door to my 82 year old mother. Both of my siblings tell me what to do but don't help. I have hired a private caregiver. It has it's own set of issues but it also gives me some relief and down time. My advice hire someone to give you the time you need to recharge. Its not perfect but it helps.

I'm in the same boat, taking care of my 89 year old mom with Parkinson's. Hiring caregivers during the week helps immensely. Her doctor said she needed the stimulation of someone else to talk to, plus they help with the hardest part, getting her out of bed and cleaned up for the day. One day, sometimes one minute at a time.

Will someone please, please explain to me why people think they are not "good" if they don't let themselves be abused, tormented, have tons of problems and difficulties and heartbreak dumped on them - even at the cost of their own lives and sanities and families. No one on this earth do I know of that MUST, MUST be a caretaker. Some people can do it and do it willingly but they are different than many of us. Other people, for various very valid reasons, simply cannot and should not be caretakers. We are all different. I stick by my concrete beliefs. Do what you can out of love if you had a good relationship; if not, you owe them nothing. But when the bad behavior, dementia with all the related problems starts to impact YOUR life when it is YOUR turn to live life, YOU MUST FIND ANOTHER SOLUTION. Do not let yourself be emotionally, physically and financially ruined. You do NOT deserve that.

To Dana 235
THANKS for sharing. I needed that..
A Caregiver’s Bill of Rights

Great advice already here. I would like to add that the anger and frustration subside a little when you learn how to deal with things. It's still all new. You will learn most importantly that you cannot do this alone! Get help in whatever form is possible.

You have the empathy of this group, who share your burden. After a prolonged illness which cost me everything, I was forced to move in with my dad but I got disability and so repaid my Dad a lump sum for 2 yr. Assistance then a monthly contribution. Over the last year, That's dementia has worsened and so will your situation as that is the nature of aging and being a care giver of it person who has these issues. The forewarned that they get emotionally more difficult over time, And your responsibilities will mount as Your personal time Dwindles. Do what little you can to make your life pleasant. I started a butterfly garden and bird sanctuary on a shoe string which gives me great joy. If you live in an apartment you can at least you potted plants and things or some kind of hobby like knitting or crafting or whatever makes you happy. Find assistance through the a senior care center or your local clergy. The government is providing less and less support, But in some cases you can apply for support, Which would mean in house care. Even if your father resists, tell him you're doing this for you and that your doctor and support group insist upon this. Explain that you must be healthy and hearty and saying in order to care for him. Hillel, a scholar said, "If I am not for myself, who am I? If I am only for myself, what am I? And, if not now, When?" I recommend you type this out and keep it close to you along with the Serenity prayer. Make a list of small things that make you happy that you can do. Keep a journal which will include things about your father that can be shared with your family and his doctors. This will give you help legally and ethically in time. Others in the group can give you advice about legal issues and protections. Ultimately, Remember that a drowning person will drown you with them. If you have to leave at some point and can leave at some point to survive and keep your sanity, do so. Unfortunately, I do not have that option. I wish you happiness and good health.