I’ve been taking care of him on my own since September and didn’t feel good today so I lost it. I’m slowly getting thru the red tape, he’s retired navy, getting help from the VA, but how do you keep yourself from losing it? We’ve been doing so well. I’m so sad and feel so guilty.

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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.
Helpful Answer (21)

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!
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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.
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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.
Helpful Answer (13)

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.
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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....

Helpful Answer (10)

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.
Helpful Answer (10)

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 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!
Helpful Answer (9)

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.
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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
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