I feel so guilty, sad, terrible after yelling at my husband who has dementia. How do you keep yourself from losing it?

Just; I haven't been through caregiving for a spouse. I can't imagine how trying this must be.

Years ago, I totally melted down and tore my husband apart for acting "stupid". The next day, he was diagnosed with a huge, but fortunately operable, aortic aneurysm. So I know the frustration that you're talking about!

There are two really great dementia specialists, Teepa Snow and Naomi Feil; can you google them and watch their videos?

I'm sure others will be along shortly with great suggestions. Please know that we care and want to hear back from you.

If it's any consolation, there is now a group of dents in the dining table from the night I slammed my big heavy set of keys down (HARD), while screaming at my mom to stop being such a bleeping a**hole. That was in September. I started staying with her in June. So....June to September/September to December....yup, the timing sounds about right for reaching your boiling point!

Not long after that I found this forum. And also got a kitten, which helps my emotions feel more balanced.

I feel like I have my anger more under control now. Venting it out here helps A LOT.  So does reading people's stories here about similar struggles....knowing I'm not alone and I'm not the worst person on earth.  It's hard out there in the "real world" - people who've never done this kind of caregiving have NO clue what it's really like.  Knowing it's not her fault she's like this helps a little. Knowing she'll forget whatever awful thing she said or did helps a little - in that I try to treat each encounter as a "fresh start" now. Kitten snuggles DEFINITELY help. Doing more things for me helps, like spending more time with my friends instead of turning myself into a martyr for eldercare. Telling my friends the TRUTH about what's going on helps, instead of keeping it all in the family (keeping family problems hush hush is how I was brought up, and how my mom was brought up, too).  Their support is everything to me.  Occasionally I'll buy something I don't need off Amazon, and the anticipation of checking the mail is uplifting! Also I learned to make soap! That was fun and a good distraction. 

Also home support helps.  I only have them in 3x a week, but those ladies are AMAZING!  I don't have to struggle with things like hygiene or getting her awake and  dressed for medical appointments.  They come back at the end of the day to get her dinner ready and make her a cup of tea, get her in her jammies and put a warm blanket around her in front of the TV.  They know what they're doing, and they are also much nicer to her than I am.  She resented them in the beginning, but I told her they were for me not her.  Now she enjoys the way they make her feel a little pampered.  And I get that essential little bit of morning and evening time to myself, to collect my senses. 

The thing I find is I have to accept my anger for what it is. People with dementia are often like bratty toddlers or snide teenagers, except they're ones you can't pick up and put in a time out. If you try to force yourself not to feel anger, it WILL build up until you snap again. It's OKAY to feel anger.  Be angry.  This is sh***y stuff we're dealing with, and it's not fair that even people in the health care system don't always understand dementia all that well, and sometimes don't seem concerned with the stress and workload dumped on us caregivers.  But the tricky thing about anger is not using it against someone else in a hurtful or negative way. 

A friend of mine recommended a parenting book to me, of all things. It just arrived in the mail (from Amazon!) yesterday. I never had children so I don't really know how to handle them when they get out of line. But that's exactly what my mom is when she gets in a bad way - like a child having a temper tantrum, or sulking, or whatever behaviour she's exhibiting. Anyway, I've been trying to use more "parent-speak" with my mom lately, instead of trying to treat her like the grown up she used to be, and that helps a bit. Parent-speak....not like being a dictator or an authoritarian, but the modern way people relate to their kids now.  Staying calm and not just being reactive. I'm excited about the book. Oh, it's called "How to Talk So Kids Will Listen, and Listen So Kids Will Talk," by the way.

You're not the first, and you won't be the last. Taking care of Dad was and is the hardest job I've ever had. Do the best you can, get help when you can, take a break when you can, and come here and vent often. Hugs and kudos to all the caregivers out there!

I have been taking care of my dad for 15 mos and I was as calm as I could be for about 5 months. He had a TBI and the Drs were
Saying he may get back to where he was before the fall after surgery. I was doing my best for him because I thought I was
helping him recover. He never recovered mentally from the operation. He is physically in good shape for an 85 yr old man
With a lot of hard living. He now ask me the same question over and over until I want to scream. I will tell him I am getting his lunch in a few minutes and he screams from the back room are you getting my lunch at least 4 times before I can make it. Every time he hears my phone ring he starts screaming every 4 or 5 mins
“Are you still on the phone.” If I don’t answer him he keeps on until I’m about to lose my mind. If I go into my room and he sees me he
Immediately wants to know what I am doing are starts asking questions about nothing? I honestly haven’t gone to the bathroom
without him screaming in months! I lose my temper all the time.
I don’t know how anyone would live like this with out losing it a few
Times! Don’t beat yourself up! You are making a very huge sacrifice to take care of her. I wish you the best. I am looking into AL in January.

well it is hard ..i do not know how long or how effected he is on it ..but more & likely he will not remember the events that happen the day before ...you got to have more patients try to remember what you are dealing with ...& put that in perspective & keep in mind of it ...remember dont sweat the small stuff try to keep big stuff small i think i am getting to do that my mom threatens me to throw me out & this & that ..i also have discovered that melatonin can actually work to settle him down .it does with my mom
when she gets out of hand i give her them get 3 mg for small &then 5 mg for the bigger ones .& i think it does not hurt so much .they say it is a natural sleep aid my mom has a lot going on either the sundown or bladder infections she has a catheter soi thought she was going down hill but it might be a bladder infection ...my mom got mad at the caregiver that we have & she did it b/c the pain she has for the bladder infection made her do it .. so hopefully if we get the bladder problem controlled might be good for a while . try giving him a 3 mg before noon & see how it effect him .boy dementia is hard to deal with most of the time my mom stays in bed she thinks she is sick sometime yes ...

Just tell him you are sorry. He will understand on some level.

Yesterday, Christmas, I totally lost it. Our problem isn't dementia -- it was just one bad decision, maybe two. My disabled spouse, who had a major stroke 6 years ago, tried to walk around the house on his own while I was out for a short time, and we ended up needing two firefighters to right him and transfer him safely to a wheelchair. He is cognitively OK, so I wasn't expecting this emergency. Physically he needs help with all the ADLs, so I am constantly on call for everything he needs when he's home, and he is a fall risk. He attends a day health program several days a week but due to the holiday, he has been at home for a few days. I had volunteered to look in on a friend's pets twice a day, spending about an hour each time at their house a few blocks away. Such trips hadn't been a problem up to now... I've always been able to leave spouse at home for short shopping errands; we have a Lifeline system which I put on him before I leave the house, and also put a phone nearby if he needs to call me. Anyway, I was at the neighbor's house yesterday when I got a call on the Lifeline system. My spouse had gotten up to answer the door, unattended, and had wandered all over the house looking for keys to open the door for what turned out to be a stranger (that's bad enough in itself). He was now standing/leaning against a wall, unable to move, and at least had had the presence of mind to use the Lifeline. When I got the call from the Lifeline contact I totally lost it and said I was five minutes away and would head back home immediately. Lifeline offered to send the fire department first responders. I initially said no but then realized I didn't know what I'd find when I got home and would probably need their help. I turned out to be right. It took two men to right him to the point where we could seat him in the wheelchair. They asked if he had tried to wander off, and we both said no; asked if he needed paramedics, and that was no, also, since he hadn't actually fallen, just needed a Lift Assist. I told them I was glad they'd come, because I couldn't have moved him on my own. They replied, call any time this happens -- if you hurt yourself, you can't take care of him. I was very upset that he had decided to walk around the house unattended while I was out. I have already had to give up employment outside the home, as well as most other mobility at times he is home. I realize that so many of you have less support than I do in terms of day health and city first responder services, but the thing we have in common is that feeling that your life is not your own any more, the identity you had is lost, and there is no real freedom.

As frustrating as it is and as defeated as you may sometimes feel, my caregiving mantra while caring for my mother who suffered from dementia and who also did not raise me as a child was "treat others as you would want to be treated". I kept thinking how would I want to be treated if that were me. God help me, I hope it never is. Dementia is a ravaging disease, taking away one's previous life of dignity and respect. Good luck. It is not easy. You are human. Forgive yourself. As a caretaker it is hard not to blame yourself for many things. But forgiving yourself and trying to do your best now will save yourself from the possibility of blaming yourself for so many other things that you simply don't deserve to blame yourself for after they are gone, like did I do enough for my loved one, only if I would have done this, on and on, etc. Nothing in life prepares us for this even if you have been a caretaker for someone else with another health issue. In those experiences, the unhealthy person usually has their mind and their personality etc. In experiences with dementia as you well know, you are a caretaker to someone who becomes someone that you do not know and only a former shell of who they once were. Please be kind to yourself. Good luck.

HI: I too have a husband who suffered three strokes within two years. He has dementia and I agree he is like a non-stop asking toddler. I too try to be patient and use a sense of humor while answering him, all the while, knowing he is not doing this on purpose. That helps me those times I want to scream or just run away. Getting cross just means you are getting tired of the sameness of constantly re-directing this new behavior. My husband was my business partner, a great cook, loved shopping, and in all ways was my partner in our busy life for over 30+ years. The change in circumstances made me the primary breadwinner, companion, caregiver, cook, etc. and I have no social life! There is a great book titled Cruising through Caregiving that I recommend you order....it is an eye-opener into caregiving with practical advice! Hang in there....this forum is wonderful for all of us to give each other support and encouragement ! Have a blessed day!

Just, I am there......have been caring for my wife who also has dementia for going on six to seven years. I am 82 years old and my wife will be 82 in Feb. No help or assistance here. Just me. The kids live a great distance away and are just now beginning to understand, some what, just how the world turns under these circumstances. I tell them their day is complete when they go to bed but mine isn't. This is normal while caring for one with dementia.

Hang in there is all I can tell you and don't beat up your self when you react in a normal (?) manner. God bless you my friend. You have much company.

There are times when one must release pent up emotions or implode.. I sometimes do this when I am at the end of my rope and am immediately sorry. It happens....

Ren

Anyone that tells you that they have not "lost it" is lying to you...and to themselves.
There is no way you can take care of 2 people, maybe more and not loose it once in a while. (by the way the 2 or more people are you and your loved one and anyone else you care for)
Just because someone now needs a caregiver does not mean you become a saint. Life still goes on, they still do things to piss you off, you do things that piss them off as well. The difference is now there is a disability that does with it. It might be a physical or a cognitive one maybe both. And now you think you should not get upset, or yell. The difference is now there may not be the understanding why you are yelling as there once was.. And that makes it more frustrating because they "just don't get it" as to why you are upset.
So do what you have always done. Say you are sorry. Give him or her a hug and a kiss. And forgive YOURSELF. You are human after all.
And you now realize that you need a break, you need help.
Next time someone asks "what can I do to help"...grab your list.
Next time you stop at the store could you grab a pound of coffee and a gallon of milk.
Can you stop by next Thursday, I have a doctor appointment at 5 and I can't leave him alone.
Tell your kids...
I need to have the furnace filters changed could you come by next Sunday and do that, I will order pizza.
My friend wants me to go to a movie with her, could you come by next Saturday and watch Dad while I go out for a few hours?
People are not mind readers they want to help you need to give direction and a specific task . They get to help, you get done what needs to get done and you get a bit of a break.
Set aside some time each week just for you. Read a book, watch a movie, take a nap, or clean that closet just do something because you WANT to not because you HAVE to. This is not being selfish this is saving your life.

I have been Mom's caregiver 24/7 for the past 3 1/2 years, 18 years previous to that all my spare time. My stress level redlined Saturday night and I yelled at her. It was a very rough weekend. She doesn't remember, but I don't like getting pushed to that point. Everything I said to her was true. I couldn't keep it inside any more.

It has ben four months since my wife passed away and I still experience remorse over my experience taking care of her. It was a terrible time and it still hurts that I could not get help. I had family that would not help and even called Adult Protective Services when they thought I was not taking care of her. I had I had two different home services where the nurses and aides were fantastic but were removed when their supervisors demanded I use a full size wheelchair instead of a people transporter. (I could not use the wheelchair in our small home). I then discovered hospice care. At first it was a disaster. The first hospice company (a big name in the industry could not get help here more than once a week, did not instruct me on her medications, could not get the proper equipment, and also had one of those arrogant supervisors who treated the nurses and aides like dirt. I changed hospice providers and finally received the help I need but then my wife passed away a week later.
The only thing that helped was when I was told how to communicate with her. First of all I was told to remember the problem was not her. It was the disease. Then I was told that most people with dementia do know what is happening but they don't know how to respond. So I began talking to her and explaining things without expecting a response. I hugged her and kissed her and told her how much I loved her. I was rewarded by her smiles. My only regret is that I did not know about communicating with her until it was too late

It really is ok to lose it... we're caregivers.... it's a tough job. How could we not lose it???

"As a caregiver, I have the right to get angry, be depressed and express other difficult emotions occasionally."

On my bedroom wall I have the "Caregiver's Bill of Rights." to refer to whenever I need. Its a list of things I'm allowed to feel or do.... take care of myself, seek help, take pride in my work, etc. Pinterest has different ones to choose from.

But what to do with that feeling??? Go for a walk, take it out on household chore, garden, vent with a friend, find a support group, take it out on a "Damn It" doll, but most importantly get some ME time.

Ask friends, people from church, an old Navy buddy to stay with hubby while you get your ME time. The worst you get is a No, but you don't know unless you ask.

Check your state for help with respite care. OK has Maddie Luke that will help pay for respite care.... up to $10 an hour.

Check out the VFW or other veteran programs. They may have activities for your hubby to attend.

After 3 years of togetherness, no nearby family, and my BFF just moved away I had to hire someone. A lady comes every Wednesday for 4 hours so I can get away. It was hard at first but I need a break from mom as much as she needs a break from me.

Negative feelings are always ok, just don't stay there. And remember you're NOT ALONE!! Have a bless day😄

I've been living with my mom for the last 4 years. She gets sundowners...memory goes to hell around 4 pm through 8 pm. She wants to go home...call her father... thinks I'm keeping her here and am lying to her...It's maddening. I lose it often. She either understands or forgets about it, and we move on. We used to fight when we were both younger too. It just happens. She is better here at home...that's the important thing. I can't imagine how those 4 hours would be for her in a facility. Feel better.

I wish I had more patience and I often pray for it. I did not choose this job and have no idea why God chose me for it. I don't lose it often, thank God but it does happen. Then, I apologize, tell him this is hard for both of us, tell him he deserves more but that no one could love him more. Then, hope he forgets.

This thread came at the perfect time. Yesterday, Christmas, my husband and I spent alone as we had had the family party on Christmas Eve. I was working on clearing out my husband's (has Alzheimer's) VERY messy office as we are downsizing to a smaller home. I couldn't lift the garbage bag out of the container as I had filled it too much. I asked him to lift it out for me. He did and then put it right back in and said, "See, I can lift it." I asked him to lift it out and keep it out and he refused - said he already lifted it once. Yikes did I lose it! I think they could hear me way into the next county! I felt badly but I truly know I'll do it again. Day after day taking care of him is very wearing and I'm only human. He does these quirky things and sometimes I feel he tries to piss me off on purpose. I know it's the disease but sometimes it still gets to me. I do my best and forgive myself. I would suggest those who lose it (everyone) do the same, let it go, and move on.

OMG! Living with someone with dementia does test your patience to the 'endth' degree!

My husband and I took care of mom for 5 years living next to her and 5 years living in the same apartment with her.

The moment we found ourselves getting angry within, and at times losing our outer patience with her, that was the moment we looked at each other and agreed Mom had to go to a caring facility.

We knew deep within that we were no longer able to offer her our good energy, in fact we felt we were harming her emotionally and energetically. We were also getting physically sick from the 24/7 stress and knew it was now very important to take care of ourselves as we are in our late 60's.

Please watch that 'point of caring' where you need to assess realistically why you continue to do that although it is clearly not working for the best of each person involved. If you are doing this out of responsibility or guilt, watch it. You may be walking on the wrong path for all concerned.

Yes, it is a difficult decision. But if you do not make it, you may do more harm than good.

All the best!

Thanks to all of You for having the courage to share your moments of frustration. My husband is in the moderate stage of dementia....there are many fleeting seconds of annoyance but I’m able to remind myself it’s not his fault etc. Then comes that BIG annoyance where I may yell. Like you I feel guilty. And alone....sure no other people in my shoes are as selfish etc etc. I am trying to learn to forgive myself and own my humanity. Someone else wrote about losing a part of oneself as we travel this journey. That really was an epiphany so I thank you for that awareness. To sum it all up, this journey is difficult, we are all subject to human frailties, let’s work on accepting our loved ones aren’t the only ones going thru this....we are too, and, for me, forgiveness and knowing I’m not the only one. Thank You All Very Much!!

Ask yourself this: Am I a piece of stone or plastic? Am I alive or an inanimate object?
Face it - you are HUMAN. How could you NOT explode and yell and otherwise react to the constant things that these dementia people do. You are doing what a lot of people would do. The constant repetition, the "stupidity", and all the rest that goes with the condition would make anyone insane and finally cause them to explode. I say this is normal. You are angry, sad, frustrated and hurt. What you are dealing with is not the person who once was and you are reacting normally. These people are ill and need help and are not aware of what they are doing and you are doing your absolute best to help them and care for them - but it doesn't work. There comes a time when you must realize the kindest thing is to place them somewhere that they can be cared for properly and you can have peace and the life you should be living. This is sad but true. We sane people who remain cannot have these people with us if their actions are beginning to destroy us. We must take appropriate action. It is sad but true. Good luck to you and be strong.

I yell at my DH all the time - when warranted.

I know, you're not supposed to. Well, in a moment of clarity, he said, "I know you love me when you yell at me."

So, sometimes it IS ok to yell. It also lets DH know that he isn't dying. No one would yell at a dying person.

My hubby of 63 yrs w alz 10 yrs so I can relate. I must keep reminding myself he is in his unchanging world & im in changing world soooo I'm the only one that can chg. Look the other way till they settle down. Remind them they are safe & you love them & will not leave them alone. Actually that is way to many words for them at once. One statement short at a time. I want to loose it too so take 3 deep breaths give 1 short loving statement. This to shall pass & they will not remember so as they drive us crazy w questions a short sweet answer is all they remember for 1 min. Then question again. Also could write answer on card & flash it up. I guess God chose us as caregivers because we are special people. So always remember you were especially chosen because you are such a wonderful person.

VA has respite help for their people. I think it's 2-3 times year, your love one can stay in NH while u take a lil vacation even if I check into a hotel in ur city. My cousin did this with her husband just last year.

First I would say that you do your best. Mine has been a year. I have tried so hard to cope, every day, every night. But I too have lost it. It is so hard, especially when you are physically and mentally exhausted, to be up, to cheerfully care for your loved one. Whether it is a parent or a spouse, the feelings, though different in each situation, are, nevertheless, so stressful and heartbreaking. It also depends on the relationship you had before the dementia began. Whether good or difficult, the change seems like a death in many ways. And yet there is no end. The grief just continues and you just hope that there is enough love to get you through. Those times when you lose it, are, I have to hope, a way that your grief boils over in anger at the daily loss. Please know that you are not alone. Give yourself the grace to sit down with your loved one and touch their hand. If you can. Express your regret simply, and move forward, knowing these times will come again-but a support group will help you to vent your sorrow and frustration and learn new coping tools from others. I send you honest feelings of care and understanding.

I will just echo some of the other comments. I am one of the nicest people I know: gentle and compassionate, never swear. Well, in my caregiving "career" I have to confess that I have lost it to the extent where I kactually had to leave the room because my anger was welling up physically. Yes, I have been angry and frustrated at times to the extent that I used 4-letter words with my mom. It is all about frustration and fatigue. My words of "wisdom": with dementia the chances are good that your loved one will soon forget anything bad you may have said/done. One cautionary note: If you ever think you might do some physically abusive - I scared myself a time or two with my thoughts - that is really the red flag to reconsider the extent of your caregiving duties. Happily/unhappily, the farther the person goes down the dementia road, the less "fight" and willfulness they will have, and the easier it will be for you to caregive them. Good luck.

I am human and I did get upset at times taking care of my wife. The important thing to me was I calmed down immediately and overtime I realized what I was upset about is not what she did I was upset about what the disease has done to our future plans-the losses along the way that I was grieving about. This was in the early to middle stages of the disease. After that -yes-
I would get frustrated at times but not lose it and I would give her a long hug and that would calm the frustration as I know she was not doing this to me to "piss" me off but it was the disease. That also became my mantra "the disease, the disease" when I felt myself getting frustrated. It was hard and I had to work at it but in the long run I knew I had done the right thing. She could not change but I could.

I'm actually proud of you for being strong and admitting you have a weakness. I have far more respect for someone like you than I do for someone without a conscience. I'm glad you're able to actually admit what you did and how you feel about it, I'm sure so many out there don't. It takes a very big person to actually admit they made a mistake, how and why that mistake was made and for that I'm very proud of you. I would make it up to your husband when he has a moment he's in there and I'm sure he'll understand. Remember that the best of him is gone and he's not who he was, he's becoming a whole different person you don't even know. Have you tried hiring other in-home healthcare services to come in and help when the veterans service workers aren't there? The more help you have, the less likely that you'll blow up again and feel the same way you do now. Just don't let this happen too often unless your conscience becomes totally numb and you become hardened

Thank you for sharing and all the stories that followed. I have been caring for my father in law in my home since I was 37 and now almost 48 years old. He is 82. I feel like I have had no life for 10 years and as his dementia worses I get more hopeless. He is on dialysis and has been for many years. His labs are great. My health keeps deteriorating. I have been hospitalized with pneumonia 3 times the past year, 2 back surgeries because he kept falling and I picked him up by myself. He is paralyzed in the left arm from a stroke 10 years ago and over 200 pounds so picking him up was very lopsided, but when someone sees a helpless person on the floor in their own poop u feel bad. So needless to say I have become resentful. Resentful at him because he has always been lazy since he retired. His sons for not helping and dumping it on me and most of all myself for not taking care of me as well as or better than him. My advice to you is put the bat away! Dont beat yourself up. You are in this for the long haul!! I have yelled at my father in law for pooping all over the house and not telling me. He was an army leader of 700 men, he wouldn't want to be in poop if he had soundness of mind. So I say sorry and ask for forgiveness and try to move on because it could go on another decade. Just take care of yourself in the very best way you can. Don't do anything extra so you wear yourself out quickly. After dads stroke I took him to 165 doctors appointments and physical therapy appointments the first year alone and he still expected fresh food daily. I should have told him "No". You can have leftovers because after all these appointments and cooking fresh food I have no time for me. Take care of you first and then him because if your health fails he will loose you. It has only been the last couple of years my husband finally realized it was too much and began to take over some. I still have meals, medications and insurance to deal with, but he does the dishes, cleans his dads room, bathroom and his ADL's and opens the door to the ambulance that takes him to dialysis. And thanks to God he hasnt had a pooping accident in months. It all stays in his diaper or toilet. Human compassion makes us forget ourselves, but that can turn againist us as it did with my health. I held in my feelings, didnt take care of my needs and got resentful and very sick. You must Remember you!!! In remembering you, you can be there for him!!! Oh and give yourself a pass. Ask for forgiveness even if he doesnt understand. Ask him for yourself!!! I am so glad I am not alone in this and feel so bad at all my seniors going through this. I cant imagine how much harder you all must have it. I am young and have such a hard time.

Caregiving is something I never thought I would be doing for my husband. He has dementia for 3 years now. I am so sorry to hear all the sad stories above but not being alone on this sad journey doesn't seem to help me. We have been married 58 years and he has always controlled me and our marriage and still wants to continue but mentally he cannot but still insists he can make lots of decisions. Tells me and everyone that I boss him and treat him like a child. I am lost as far as coping and handling these situations. Feel like a failure as a caregiver.

Hi Rereita...my heart goes out to you in a big way. You aren’t a failure as a caregiver.....you are there doing the best you can do....that’s not the definition of a failure. My husband was also controlling & while I love him, I also have resented him. Fortunately for me, he’s less controlling & seems more appreciative of me. Caregiving, for me, is a lonely road & yours must be even loneliner putting up with his attitude & snarky remarks. Since this morning, reading this thread, I feel less alone....there are men & women dealing with every aspect of what we feel & experience. I will look @ this thread every day & hope to see you so I can keep in touch. I care & hope my caring helps you feel less alone. Here is a virtual hug!