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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 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
I totally understand that my Mom is not doing these things on suppose BUT even if she was it would be disrespectful to yell at my Mom. I couldn't imagine doing it.. If my kids yelled at me "all h**l would brake loose"...
dementia exascerbates all kinds of quirks. i could handle crazy and the steady stream of mistruths but ocd behavior fries my mind. once i learned more about dementia i could even overlook the ocd. sit there and melt down b**ch, i still aint weed eating that steep bank. sain't happ'nin ..
Sympathies to you.. I'm finding it hard to keep my cool as my mum is in the early stages of dementia, although it seems rapidly progressing at the moment. My husband keeps telling me to just keep calm, but when something is directed at you personally, how are you supposed to ignore it?!!!!!! I swear at times I will probably die before my mother with all the stress!!... Big hugs to you, sorry I couldn't give any good advice x
I have the same problem. I've started going to a caregiver support group. It seems to help me vent a bit.
The other thing that helped me is that, one day, she was really pushing all my buttons and being totally obstinate and I got so mad I told her off and was shouting. I didn't say anything too horrible, but she just seemed to shrink into herself. I could tell that she didn't even understand why I was so angry. I felt like such a heel, too. I've been much better since then. It was the thing that really just made me feel kind of resigned to it all.
So, now, I feel tired every day and resigned to my lot. It might not be a positive thing, but I get all my stuff done and I'm not yelling, so it's an important, I guess.
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.
After I wrote my previous post, I also began to think of issues regarding what seems to set me off. Again, I totally KNOW that I am not angry at Mama, I am angry at the dementia....and subsequent alzheimers....I am a Christian but lately I find myself getting so angry I swear...a LOT....and I am ashamed. I am so d**n angry at this disease that has taken my sweet Mama away from me, and now it is speeding up. I cannot believe that she survived a fall down her basement stairs, sustained an almost life ending brain injury and yet she survived that and went through rehab and came back to us...now, this disease is going to be what takes her from me. Her physical health seems excellent. In all honesty her vitals are always close to perfect, much better than mine. So it is so hard to understand how this disease has brought her to the point where she can't even lift her arms, can't lift her head, just sits and stares at me most of the time...rarely smiles anymore and when she does, oh how I cherish those moments and try to cram as much "us" time as possible in there....
All that being said sometimes I think I a yell at times because I secretly wish she would yell back at me, evoke some sort of emotion, be Mama again....but she just looks at me. And those times when she has told me she doesn't know who I am....like daggers through my heart.....I don't know...it is shameful that I have ever raised my voice at my Mama and while I know how disrespectful it is, it happens with a lot of us I know...I see so many things now that Mama did as well that were the disease and not her and at the time I didn't even realize she was developing this....and that makes me feel horrific guilt. Why didn't I get her to a doctor sooner....but mama was one who refused to go to a doctor, period...for anything...She never went for checkups....never seemed to need to...ate right, worked hard all the time, followed the perfect formula for excellent health, which she has, and yet, this damnable disease.....yes, I think the yelling is anger...directed at myself....because for all my efforts and love and praying and caring...I cannot "fix" anything...and you just sit there, keep them comfortable, clean and well fed, tell them you love them, and watch them slowly, sometimes quickly...slipping away.....
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.
Hello, This seams like a great place to vent. My mother is 83. I do not believe that she has Dementia, but I do think that she might be losing some of her memory. In the past year I have raised my voice to her many times. I am not sure how to handle this. We talk about something &V a few days later she forgets all about it. So now I am lying or making stuff up. I came down here about a year ago to help her, she has heart issues. Need less to say I have not moved back home. We lost my father in 2010. Too many issues in her past to go into right now. My one question is, How do I keep myself healthy & from not just walking away? I am so ready to leave & go back to my life. Today, really big fight. I am going to talk to my brother(he lives in Germany) about either putting her into a health care home or having someone come in to help her. I feel that i am rambling here, but i really think that I have lost my mind. Just asking for so help, maybe other escape plans.
One of the challenges of caring for a loved one with memory loss is the frustration of the disease. I heard Teepa Snow, an awesome speaker, talk about dementia and she changed the way I coped with my Dad's behaviour. I'm not saying I didn't get frustrated, but having a few new coping behaviours helped. Check out her videos or YouTube -- just search for Teepa Snow or go to her website www.teepasnow.com
As caregivers, we need all the help and support we can get, but sometimes we are afraid to ask for it. When you find you've reached the end of your rope...ask a friend or neighbour to stay with your Mum for a couple of hours and...escape! It will do you and your Mum the world of good!
If you live near Toronto, Ontario... Downsizing Diva and Metroland Media are presenting THE CAREGIVER SHOW on Wednesday, May 14th - admission is FREE! One of the highlights of the show will be Teepa Snow's presentations which will also be LIVE STREAMED so caregivers who are not able to attend will be able to hear Teepa's story and gain insight into dementia and caregiving. I just love one of the presentation titles -- "If memory loss is an iceberg...don't be the Titanic!" Check out our website - www.caregivershow.ca for more details.
Someone once said, the only thing a person with memory loss/dementia will "remember" is how you make them feel! And therein is the challenge...
Hello...my mom is currently in a rehab/nursing home short term. I am going to have her live in an assisted living facility... "our" choice. She can not be home alone nor do I or will I live with her. I am not capable of taking care of her and I will not "kill" myself trying to. She will be better off, safe, among other people, kept busy, and well taken care of. She turned 90 last Sunday. She has a little dementia and can hardly walk now. NO GOOD. She makes up stories from time to time and I just go along with it...you can't argue. Now the headache of cleaning out her apartment and giving away and selling things...ugh. I take one day at a time and take deep breaths... lol Good Luck to every one and have faith. Seena Brooklyn NY
I can SO relate to all of this. We have been dealing with my husbands's mother for the last 9 months and up until recently, it was a living HELL! His stepdad died and left us with her and her worsening dementia. When she lost him, who did everything for her, she lost her life line. She has always been demanding but the dementia and all the changes of having to put her into an assisted living, made her mean and combative. She has made weekly trips to ER because she was always dieing.. and nothing is really wrong with her, other than her mind and wanting attention. Finally, after 9 months the medication protocol they have her on is working for the time being. We KNOW this will change at some point again, with the progression of this disease, but you just have to ride out the storm as best you can without losing your mind, and let me say, it is NOT easy to do. It is truly one of the hardest things to deal with and dementia/alzheimers is an insidiously cruel and heart breaking disease for everyone in the family who has to deal with it. Take time for yourself to recharge your batteries and pray a lot!
Just a little thing that might help. If the room is too warm, I'm more likely to get mad at my mom and yell. So, now I wear lighter clothing and it's helped. I still get mad, and yell, just not quite as often.
I am in the same boat. I need suggestions. Every time I see mom I say I'm not going to get angry and it doesn't work. She worries about the craziest things and it consumes her. The latest was about the garbage man not picking up limbs in her yard. You would have thought the world is ending and she says she's shook up. I start yelling about how crazy it is to worry about something so ridiculous and then I am consumed by guilt. Weekend ruined.
I am menopausal now and have always been warm natured. Now I am always hot. My M-I-L with dementia is ALWAYS cold, so it is so hard to have us both in the same room to keep us both comfortable. I usually just give in and suffer so that she will not complain of freezing to death. Luckily, she does not live with us or otherwise it would be intolerable.
caring for someone with dementia I think is one of the hardest roles that we can ever take on. it"s almost like going through a long grieving process because the person that we knew before dementia struck has now gone. keeping patience is not easy but I suppose the mercy is that even if tempers are lost, tour mum will likely have no recollection of it. don't be too hard on yourself- you are only human. a mum is what we have seen as our rock throughout our lives, we can no longer share our problems with them,it is now your turn to be hers. it is a worrying time which makes one frustrated and stressed out, but in the midst of it all remember that you need (me time) too if you are to continue in your caring role. my mum was once a lover of soaps and films on t.v. she has no interest now, each Saturday myself & 2 sisters play all the golden oldie music to her , music from the 50"s sometimes she will say she knows the tune but of course no longer knows the words, I have downloaded them all from the computer, not only does it relax my mum , it works for us too.as a carer all we wish for is to turn back time and get the mum we once knew back again,try playing her favourite songs from the past, to see her tapping her feet or taking in the music will certainly help you chill out, to do it each day it will have no impact but once a week could help her. I hope so .
My brain is constantly working overtime to figure ways to always be in control of our situation, which is impossible, of course. Helps me to realize I can prevent a good bit of my anger by anticipating what she will do daily. All day long it's "Where's my purse/ATM card?" (she hides the purse; I've had the ATM card for years now. If I see her without the purse, I quietly get up and find it usually under her mattress or in a drawer and just get it and lay it next to her). All day Sunday it's "Did I go to church?" (have been taking her Saturday nights for years, what for I don't know since she can't remember what goes on. I'm gonna try fooling her tonight since this church she loves is in a bad neighborhood and I'm tired of this unnecessary worry; another source of anger solved. The only thing that truly makes me lose it is her messing in my kitchen,. She will take a bite out of something and hide it or put in back in the fridge uncovered, or rake her nasty fingernails across my cakes or pies. Anyway, ta-da, now I know to store the goodies in smaller containers and hide them, leaving just a few out. The ice cream goes in the freezer in the garage, where she never looks. Another mess solved ahead of time. She's miraculously started to brush her teeth occasionally and at least take a washcloth to herself these past few days. After checking out two memory care units the other day, I'm thinking she and I are not quite ready and that I will go with my plan A as long as possible (keep her here till I can't stand it anymore). Some days are much better than others for no reason I can figure since we have a very stable routine now.
Im not aware of my mom having dementia.....but maybe her crazy worries are a sign. It's almost like she wakes up each morning and tries to decide what she can worry about and obsess over each day :(
What are memory care units? 'Sorry to be so uninformed, but I have been coping without any help until this site.. 'Thinking of getting some help. I'm 90 and sole caregiver for my 90 year old husband with Vascular Dementia. After 3:00 PM, he gets 'lost' and comes up with really crazy ideas. Yesterday he told me that we had to talk, since he was not going to work any more. (Been retired for 25 years.) The day before he wanted to go home. We took a ride but could not find his 'real' home. Most of the time I am the other Lois, not the one he married.. Very frustrating and anger causing on my part, plus despairing, I fear.
My own memory is beginning to deteriorate and general health - no real sleep, etc. There is no one who will take my place if I fail this challenge. It will be NH which will be just horrible and life threatening for him, I fear..
I thank all of you for your insightful writing. It really helps.. L
God bless you Lois! I can't even imagine doing what you are doing at 90! You are an incredible woman and human being. But, you cannot do this by yourself anymore. A memory care place is a nursing facility who specializes in dementia and alzheimers, and there are some very GOOD ones out there. We have looked into it already. Take care of yourself !
Lois, wow, you must be some trooper. All I know about these memory units (the two I saw) is that it doesn't come cheap. I toured the "San Damiano" unit at St. Leonard's in Centerville, OH. Huge new place, private rooms, mass every morning at the adjoining church if so inclined, gourmet meals, lots of individual attention and group classes (guess that's the memory part, all that individual attention) and so on. Level I is $5600 a month, Level III can run $11,000 a month. They want their applicants to have at least $160,000 up front. They won't kick you out when that's gone but you really can't be a "behavioral problem" there, meaning they're not set up to deal with too much craziness, I guess. The other place was maybe not so expensive and also nice. I think my next step will be trying to get her to some kind of daycare outing thing but she has an attitude about that. She doesn't think she has Alzheimer's and probably won't be a good team player for this but I have to try.
Ditto here. To make it worse, Mom is almost deaf which means we all have to practically yell to have a conversation even when she drives us nuts with her paranoia, repeated questions and negativity. Psychological studies show that when a person yells it increases the stress and irritation. So, we start out stressed with her, even when she isn't asking the same question 5x within 30 minutes, or complaining about the same thing 5x a day for the past 5 years. It just keeps getting worse. I love her, or at least what she used to be. Now this stranger is no fun to be around and I dread visits and feel guilty about dreading visits. Thank God we don't have to live with her. I give all of you who are dealing with this on a 24/7 basis. I know I couldn't do it.
LoisCorrine90: Don't know where you live but check out Memory Care facilities in your area. As stated above many are super expensive. However, there are also those that are nice, bright, & affordable or except Medicare/Medicaid. If you own your home, as long as you continue to live in it is NOT counted as an asset. Also, was your husband in the military at any time? At 90, I would think this may be so. If so, check with the VA about possibility of help. They have omnabudsmen / advacates (sorry about sp) who can help you. Thinking & wishing you love & strength.
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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
sit there and melt down b**ch, i still aint weed eating that steep bank. sain't happ'nin ..
The other thing that helped me is that, one day, she was really pushing all my buttons and being totally obstinate and I got so mad I told her off and was shouting. I didn't say anything too horrible, but she just seemed to shrink into herself. I could tell that she didn't even understand why I was so angry. I felt like such a heel, too. I've been much better since then. It was the thing that really just made me feel kind of resigned to it all.
So, now, I feel tired every day and resigned to my lot. It might not be a positive thing, but I get all my stuff done and I'm not yelling, so it's an important, I guess.
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.
All that being said sometimes I think I a yell at times because I secretly wish she would yell back at me, evoke some sort of emotion, be Mama again....but she just looks at me. And those times when she has told me she doesn't know who I am....like daggers through my heart.....I don't know...it is shameful that I have ever raised my voice at my Mama and while I know how disrespectful it is, it happens with a lot of us I know...I see so many things now that Mama did as well that were the disease and not her and at the time I didn't even realize she was developing this....and that makes me feel horrific guilt. Why didn't I get her to a doctor sooner....but mama was one who refused to go to a doctor, period...for anything...She never went for checkups....never seemed to need to...ate right, worked hard all the time, followed the perfect formula for excellent health, which she has, and yet, this damnable disease.....yes, I think the yelling is anger...directed at myself....because for all my efforts and love and praying and caring...I cannot "fix" anything...and you just sit there, keep them comfortable, clean and well fed, tell them you love them, and watch them slowly, sometimes quickly...slipping away.....
As caregivers, we need all the help and support we can get, but sometimes we are afraid to ask for it. When you find you've reached the end of your rope...ask a friend or neighbour to stay with your Mum for a couple of hours and...escape! It will do you and your Mum the world of good!
If you live near Toronto, Ontario... Downsizing Diva and Metroland Media are presenting THE CAREGIVER SHOW on Wednesday, May 14th - admission is FREE! One of the highlights of the show will be Teepa Snow's presentations which will also be LIVE STREAMED so caregivers who are not able to attend will be able to hear Teepa's story and gain insight into dementia and caregiving. I just love one of the presentation titles -- "If memory loss is an iceberg...don't be the Titanic!" Check out our website - www.caregivershow.ca for more details.
Someone once said, the only thing a person with memory loss/dementia will "remember" is how you make them feel! And therein is the challenge...
Sending warm hugs for your caregiving journey!
Seena
Brooklyn NY
have to ride out the storm as best you can without losing your mind, and let me
say, it is NOT easy to do. It is truly one of the hardest things to deal with and dementia/alzheimers is an insidiously cruel and heart breaking disease for everyone in the family who has to deal with it. Take time for yourself to recharge your batteries and pray a lot!
My own memory is beginning to deteriorate and general health - no real sleep, etc. There is no one who will take my place if I fail this challenge. It will be NH which will be just horrible and life threatening for him, I fear..
I thank all of you for your insightful writing. It really helps.. L