1) Learn more about dementia. Understand the kinds of behaviors to expect. Know that many -- probably all -- of things she does that frustrate you are a direct result of the disease process, and she cannot control that. 2) Join a caregivers' support group. Express your frustration there, with other people who understand you. 3) Use AgingCare as a place to vent, and also a place to ask for specific suggestions about things that come up often. Hearing how others handle something often triggers new ways of looking at things. 4) Forgive yourself if you aren't perfectly patient 24/7. 5) Adopt a mantra and say it often: It is not mother doing these things, it is that nasty dementia.
I was just having those same thoughts...I keep reminding myself that this is not my Mama, it is her dementia/alzheimers progression...but it is pure h**l. Tonight it has just culminated and it feels like every muscle in me hurts and I want to just go out in the yard and scream my head off. It is hard to come to grips with someone who is still sitting here and yet who rarely ever seems like my Mama anymore....she looks at me like she hates me most of the time, she is sullen looking, angry looking, and the worst one....intensely sad looking....in my twenties I heard all this info about dementia and alzheimers and used to think, surely it can't be as bad as all that...they're still there, with you...but honestly, it doesn't really feel like they are anymore...I know she can't help it...but on nights like this, I am so totally done in it feels like I am going to be so bitter and hateful and irritated at the human race in general.....I hate feeling this angry ...or maybe the anger is just masking the total sorrow....prayers are with you MRSCBS
Have you read anything about Validation Therapy? Sadly the website seems to be down at the moment, and so far everything I have read about it online seems to miss the point. The idea is that behaviors we see as problematic are actually expressing some sort of need. This is more subtle than it sounds and, I will admit, not easy to put into practice, especially if you are being triggered. This is where the breathing exercises come in, which are talked about on the site as well. I will go ahead and add the link in case it works later. https://vfvalidation.org In the meantime, I HIGHLY recommend the Orange Rhino program for curbing yelling. theorangerhino/12-steps-to-stop-yelling-at-your-kid/ Yes, this was written regarding children, but I think it applies. Now that I am living in the midst of caregiving, I am finding myself every day thinking about how it is similar to parenting, and how it is not. I am so glad I got the foundation of parenting a special needs child before I went into this. The urge to yell is about us, not them, and this is one of the best programs out there. I wish there was somebody writing material like this for dementia caregivers. Maybe I will some day lol. I am still learning myself right now.
I want to thank everyone sooooo much for your comments. Some made me cry and others gave good information that I can follow through on. My mom has PD as well as other major problems like, cervical dystonia which cause her to be a leaning tower - the only solution is botox injection which the neurologist and primary care is against. Because of the side affect in which it could cause some problems with swallowing; they seem to think that she may not remember how to swallow. I'm in betwixt because her head tilts down to one side and can potentially go down to her shoulder. I see another neurologist on Monday for a 2nd opinion. I tease her and say "if I put a piece of cake in front of her, she'll remember how to swallow then." She loves sweets, but of course I have to monitor her intake because she's diabetic. After reading the responses and doing some introspection, yes, I reliaze that I am ANGRY at the disease. I knew I wasn't angry at my mother, because I love her very much. One thing that I have started doing is to just let it go. I read a "blog" one day that said if it is not hurting them, then let it go. I'm trying to incorporate that more because I realize I'm fighting a losing battle "the battle of the mind." Although it's not easy to let it go, because I am somewhat of a perfectionist and like things to be in order, but her mind is scrambled and sometimes out of order. I will lose my mind if I keep fighting against it, so to all the loving caregivers out there "just let it go!!!!!" Thanks again for sharing.
I do my screaming on the inside, internalize it all. No wonder I fell like crap. I pray ti the God I don't believe in (thanks Bill Maher for that line). for patience. My mom has PD with increasing dementia and I'm so sick of answering the same questions 60x a day, during the night, and wake up to another day of the same. It's like living the movie Groundhog Day.She comes in my room and wakes me up 3-4 x a night with no memory of it. I've tried neon notes, yes you took your pill, 4 notes.. She doesn't read them, she comes in to ask me. She just came in again, 2nd x tonight. I have no friends left, nobody gets a caregivers life and dedication. I'm so thankful to have this time with her but do I want to scream. H**l yes..I attended my 2nd Fearless Caregiver Conference on the 10th, You can subscribe to the monthly newsletter for free, Gary Barg created this forum after caring for 2 grandparents and one parent.His book is The Fearless Caregiver, Try your library, worth the read. Dementia sucks and drains every bit of our energy and strength. Hang in there sport. I'd love to say the best is yet to come but I hate to lie. I hope you find some peace in your heart and mind. A fellow cg, Paula
Yell in a pillow. Scream in the car. Get some one in to watch her so you can get out. I care take my husband who suffers from Solvent Dementia I also am a counselor & an R.N. , active in the field of Mental Health , among other things. I see my husband' s as my stairway to heaven; He is the flower & I am the bee. Moment to moment....you do not walk alone.
My advice is to see your caregiving as a job and to leave the situation after you have worked a certain amount of time or when you begin to get stressed. As a Christian I know God does not want me to yell at my mother - so I have to evaluate the situation and realize that nobody can handle taking care of an elderly person with dementia for very long. Nurses and those who work in nursing homes and assisted living work shifts and then go home. You need to work it out so that you get that regular time off. Ask siblings, friends, cousins, children, etc. to chip in whenever possible. Utilize adult daycare centers, church ministries for the elderly and homebound, meals on wheels, visiting caregivers, etc. Often, there are retired members of senior citizen church groups who would be happy to sit with your mom for a few extra dollars. It's really important that you have your own life independent of your caregiving and you need to look at it as a job and try to detach your feelings and emotions. My husband and I are taking care of my husband's mother right now who has the onset of dementia. My own mother died in September after being sick for 9 months. It was too much - trying to care for her every need and then watching her die. I can't go through that stress again - I really learned from it. It aged me so much. I will help my mother-in-law by taking her out every Monday, transporting her to her doctor appointments and making dinner for her several nights a week. Today my husband and I went over and did laundry, cleaned her house and made sure the refrigerator was stocked with food she can easily eat. We made the decision that we will not be moving her into our home. Right now she is in the least restrictive environment - her home with her 'stuff' that she loves - with help from us. I would like to see her pay for someone to come in several times a week to help her clean and just keep her company. That would be less restrictive than assisted living. If she gets to where she can no longer dress or take care of herself in other ways then she will have to go to assisted living. My husband and I will be enjoying our lives as much as we can - and helping others too because there are others in our lives that need out attention - and we will not feel guilty!! Some things will not be perfect and some things will have to be overlooked but it is what it is and I have come to the conclusion that things don't have to be perfect and it's ok that my mother-in-law is not living the way she would be if she didn't have dementia. For instance, she spills food on her all the time when she eats and always has spots on her clothes. I don't have time to take all her clothes home and scrub all the spots out. So she has spots on her clothes. It's ok - I am not going to fret over it and she doesn't seem to care. Who am I trying to impress? Does that make sense? I hope you understand what I'm trying to say and that making sure you don't get sucked into the quicksand is really important for your mental health and also for the rest of your family!
I found myself doing the same thing...and after she died, I spent years going over the dialogue in my head and hating myself for how I responded to her. I beat myself up over it. I wish I could have a second chance to re-do how I would talk to her.. Looking back on it, I could have kept my frustration under control, but I didn't realize how awful and sad I would feel after she was gone.
Thank you for your honesty about a subject that can cause a lot of shame. I, too, yelled at my dad, until I realized he wasn't responsible for his actions. Now I think of him as being in the "Terrible Twos," which helps me keep my patience and perspective.When he has a tantrum I count to ten and give myself a time-out!
for me its the other way around, my mother is always raising her voice, critical and yelling at ME. I keep quiet and feel demeaned and sad at the same time. Surely, this is going to take a toll on my own mental and physical health eventually so there must be a way to figure out coping mechanisms without resorting to yelling back. My mother is in her early/mid stage of Alz and honestly I sometimes suspect she does know what she's doing at times since she is acting the way she did to me all my life before she got diagnosed.
While its easy to always point to the disease and excuse their behavior because of that, I think that also gives a pass to them. If they were mean and manipulative before the disease, they probably will be the same after the disease.
I had a child with ADHD. I used to excuse alot his behavior because of that until finally my pediatrician said to me that there are normal rebellious, contrary behaviors in kids and with ADHD those same behavior is just magnified. The bottom line is that you would discipline the kid w/o the ADHD for the same behavior so do the same for the kid with it. After that advice, my kid went on to become a fine young man who eventually graduted college with high honors. My point is that I learned to separate the person from the disease and what would be tolerated and not. I'm thinking the same really can be applied here. If my mother had a controlling, critical, scathing tongue before Alz and has it now, she is "there" in the moment she is tearing me down. Sure, she may not remember it 10 min later but in that moment she knows what she is saying. Resorting to "swollowing" the anger and resentment as a result because she has Alz just doens't seem correct.
2) Join a caregivers' support group. Express your frustration there, with other people who understand you.
3) Use AgingCare as a place to vent, and also a place to ask for specific suggestions about things that come up often. Hearing how others handle something often triggers new ways of looking at things.
4) Forgive yourself if you aren't perfectly patient 24/7.
5) Adopt a mantra and say it often: It is not mother doing these things, it is that nasty dementia.
Let us know how this works out for you ...
Dementia sucks and drains every bit of our energy and strength.
Hang in there sport. I'd love to say the best is yet to come but I hate to lie.
I hope you find some peace in your heart and mind.
A fellow cg, Paula
I care take my husband who suffers from Solvent Dementia I also am a counselor & an R.N. , active in the field of Mental Health , among other things.
I see my husband' s as my stairway to heaven; He is the flower & I am the bee. Moment to moment....you do not walk alone.
While its easy to always point to the disease and excuse their behavior because of that, I think that also gives a pass to them. If they were mean and manipulative before the disease, they probably will be the same after the disease.
I had a child with ADHD. I used to excuse alot his behavior because of that until finally my pediatrician said to me that there are normal rebellious, contrary behaviors in kids and with ADHD those same behavior is just magnified. The bottom line is that you would discipline the kid w/o the ADHD for the same behavior so do the same for the kid with it. After that advice, my kid went on to become a fine young man who eventually graduted college with high honors. My point is that I learned to separate the person from the disease and what would be tolerated and not. I'm thinking the same really can be applied here. If my mother had a controlling, critical, scathing tongue before Alz and has it now, she is "there" in the moment she is tearing me down. Sure, she may not remember it 10 min later but in that moment she knows what she is saying. Resorting to "swollowing" the anger and resentment as a result because she has Alz just doens't seem correct.
Does anyone get what I'm saying?
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