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.
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.
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.
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!
"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😄
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
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.
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
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 ...
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.
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.
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.