I can understand completely how you feel, I actually started a blog (advice from my husband who saw the angry person i was becoming) just to be able to write how I was feeling and release some of the frustrations on paper rather than on my mom. Not that I am perfect right now but it has really helped and I hope that someday it will help others. I keep saying to myself unless you "live" this situation with a parent you don't understand what it feels like. I still see the wonderful person that my mom was every time I look at her but then she speaks and repeats and repeats and the shell of the woman she once was is revealed. I am learning little by little to not yell as much and not be so angry. You definitely need time for yourself in order to release some of this anger. Take a drive, go window shopping. Any activity that gives you a little relief will definitely go a long way and will keep you healthy. I hope it helps to know that there are more of us out here feeling the same way and that no you are not alone.
They have to have boundaries, as we all do. When they get nasty, you can get angry about it and 10 minutes later, they won't remember it. We have our minds, they are losing theirs. We must preserve our sanity and health because we still HAVE to function and take care of business.
Give yourself a break when you get angry. You are ONLY human and we each have our breaking points. I agree, the controlling, demanding and sometimes mean person they were before dementia/alzheimers IS still there and it is only magnified with that condition. We do NOT have to tolerate those behaviors and if you get mad, that is ok. They won't remember it 10 minutes later anyway.
kmspoppy, although you have the family history of dementia, that doesn't mean you have to suffer it! There have been a lot of studies done on ways to keep the brain healthy in spite of the increasingly toxic environment we live in. I would do research online and talk to health practitioners (both allopathic and naturopathic) to devise a supportive plan for your self.
Out of desperation I have started my mother on a rather expensive supplement called Prevagen (generic name is apoaequorin). This is not meant to prevent or cure Alzheimer's or other senile dementia, but is supposed to improve memory and cognitive powers. The glowing testimonials online come from people younger and more aware of their problem than my 93 year old mother, but I'm not expecting miracles. Just hoping for enough of an improvement to make her a little happier and caring for her a bit more pleasant. I'm giving it one month/onebottle to assess the results, if any. If this isn't another over-hyped magic bullet it sounds like it would be good for all of us, but I'm not paying $60 a month for this stuff until my husband threatens divorce LOL!
There are so many opinions and excellent suggestions to this sad and very common dilemma that caregivers and love ones experience while trying to interact with dementia patients. I too, experience this when I visit with my mom at the nursing home on a daily basis, after working all day. The internal pain is often unbearable… just to type this is painful. I have experienced this three times during my life and I’m 53… I watched my now ailing mom, take care of my grandmother, my step-father and my aunt. At the time, she was to begin enjoying her senior years… she fell victim to this dreadful disease. So… I ask myself all the time… how will I be treated when it’s my turn??? Will someone (maybe my daughter) care for me when/if I have to make this journey? How did my mother endure this year after year… All I know at this point…I saw my mother deliver unconditional love all my life and somehow I have to keep digging deep to do the same for her. The reality of it… I beginning to experience signs of this disease myself… and it’s scary. But, for now it’s about traveling the journey with my mom.
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.
You know, I really feel that it is important to try our best to be patient and kind. We need to vent sometimes - my spouse feels better after an argument - you can just tell. Another thought: My Dr. once told me that many, most, folks with dementia do not really suffer with sadness after an altercation... they have forgotten it in an hour or so, totally. So, try not to beat yourself up over this if that was her Dx.
Sometimes there is a sense of relief for both parties when the fracas is over. It never is one-sided. It takes two.
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.
Please remember that your mother is just like you were when you were a child. We as adults now have to educate ourselves of all the illnesses they are experiencing and how to deal with them in this condition. I lost my mother three years ago this Sept. and I miss her so much. Please enjoy your mother while you still have her. Be patient and ever so loving. It is so important to get some help so you can take a few hours for yourself as well. My mother was also a caregiver and she paid dearly for it.
I have to wonder if this isn't always the case, and the "new" things were just really well suppressed. In my dad's case, he has started talking about how his dad never loved him. He never talked about that all his life! That in turn is triggering him to react to certain things my kids do and ask me, "Why do your kids hate me?" Which got me to thinking about how his first wife cheated on him and he also talks about how my half siblings "chose her instead of him." A man of his generation didn't talk about things like this. Now at the end of his life he is processing all this rejection stuff. I am just so glad he was able to speak it now before he loses that ability. So when/if I see maladaptive behaviors coming up, I will know this is one of the primary things he is processing.
How very coincidental (perhaps?) that I should get the email with this link on the very day I blew up at my 93 year old mother! Oh, we are always butting heads, have been doing so from the start, but tonight was the final straw. I slammed the cupboard door so hard it's a wonder it's still on its hinges!
A little background: I am the oldest of four children and the only daughter. My father and brothers always let Mom have her way either by staying out of her way or going along with her. I am the one who would contradict and defy her, but she also tried to control me more than my brothers. My mother is the very definition of Control Freak and it has only gotten worse in her dotage.
My dad passed away 10 years ago. Mom lives in her own home in SW Florida, strong as an ox and still getting around on her own two feet, however utterly incapable of handling finances, medical appointments, hygiene, etc., or remembering what she said two minutes ago. Her care is divvied up among me and my brothers, because there is no money left for professional elder care. (Once upon a time my parents were very well off, but they completely blew their finances.)
Unlike some of you who see a stranger in place of the parent you used to know, like caregiver14 my brothers and I are seeing attitudes and behaviors that were always there to some degree, but are becoming more and more dominant. (Oh, and coincidentally, she also sorely needs a hearing aid but refuses to accept that reality.) The sad thing is that my mother was a good and caring parent with many wonderful qualities, but in old age has sunken into bitterness, anger and denial, much of which I believe has to do with suppressed guilt over the mishandling of finances and the enabling of the very dysfunctional lifestyle of her youngest offspring who in turn enabled his abusive alcoholic (ex)wife.
I could be bitter about having to pick up the pieces, but I am working on forgiveness and trying to provide end-of-life care and comfort for my mother the best I can. Unfortunately, one incident like what happened this evening is a big setback for that goal.
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!
Hope22 - wow, I could have written your post! You put into words exactly how I feel! I am exhausted daily, yet have so much guilt for not making her go to a doc when she might have complied. Now, she refuses, but is so much worse, she needs some type of meds! I was dealing with my own illnesses, so I guess I failed in some in aspect. I sure appreciate all of the posts - I thought it was just me feeling so short-tempered.
I started caring for my mom in 2006. I didn't know she was in the early stages of Alzheimers until 2010. It seemed as though she was trying to drive my crazy!! She looked like, sounded like my mom...but just wasn't my mom!! She even accused me of stealing money from her purse! I would get SO frustrated....feel guilty. Yell....feel guilty. Not want to have to "deal" with her....feel guilty. Then, in 2012 I discovered a support group through a local hospital and it changed everything! they helped me to understand what I thought I already did. Helped me with ways to divert a lot of the scenarios that were most frustrating! I wasn't alone anymore! Others were feeling the same feelings I was! I strongly urge you to seek out the same support. Sadly, my mother passed away in March. I miss her sooooooo much. I was finally able to learn to love the woman she had become..... and stop trying to make her into the person she was!! I love you mom.... and miss you!!!
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!
Think of your voice as a musical instrument. It can be soothing to both you and your family. Or it can be scary as when you are yelling. When people are afraid, they do not think well, it just gets the fight or flight urges started. Most people yell when they really want something to change, and in doing so make it less likely to be heard.
Start with a genuine, "Why are you doing that?" for example. The answer might surprise you. My Dad was moving his recliner up and down for 10 min. It is very noisy, but he is mostly deaf. When asked, he told me he thought the control for the chair would change the TV channels! He use to be so very smart, but now, not so much.
Sometimes I can offer two acceptable alternatives. He loves candy, but also loves fruit. I can offer a bowl of cut up fruit or a frozen fruit juice bar instead. This almost always works.
Keep in mind, although the person's body looks familiar, the person is not the same as before. They may even have changed from yesterday.
I find humor helpful. When it becomes overwhelming, I think of it like living in a strange comedy. When it is very overwhelming, I read these comments and think, "Thank goodness Dad is doing better than that!"
Almost NONE of your mother's behaviors or statements having anything really to do with you. Keep reminding yourself of this.
I laughed a little with envy when I read: "... even when she isn't asking the same question 5x within 30 minutes." Out of curiosity I counted how many times my dementia patient mother asked me, "So, do you ever see your dad?" (They've been divorced for 21 years.) 23 times in an hour and 45 minutes! I respond to all of her questions and statements as if this is the first time I am hearing them.
You have to realize that if the person remembered they just asked or said something they wouldn't repeat themselves. Yelling at them does nothing for them and makes you feel badly about yourself. And why yell? It isn't going to change the fact that they don't remember.
I've been involved for 7 years in the care of my mother with undifferentiated dementia and her boyfriend who has depression and OCD issues, going to their home four or five times a week to prepare meals, refill pills, do shopping, etc. They are both heavy smokers, her cigarettes and him cigars, so the house stinks terribly and I really can't imagine what will happen if they can't live in their own house and smoke. So it goes.
@ Tennie: Re the over warm/ too cold thing. I am the same way. Many older people are cold all the time. Used to the instant warmth of a heating system. When you are in the house dress as if it is summer. (lightly), Also dress your mum as if it were deep winter. Sweaters, bright & colorful lap blankets ,or shawls are a good choice. My ML would go from having the heat on full bore one day to the AC the next. Drove me bonkers. I know it is hard, but WE are the one who must adjust because they cannot.
You must keep your temper and never yell at your loved one you care for. The disease of Dementia / Alzheimer is progressing and will get worse. You can't take back the harsh words you say in the midst of telling at them. This telling will only make them worse in their depression. Think about this..Would you want someone to yell at you if you were in their condition? You may hate them at times but when their gone can you love yourself for the outburst you have at them. learn to walk away and take a break from the care. Embrace life with happiness if you can find it in your heart to remember good times it could help you manage the stress.
I understand the frustration that comes along with someone who has dementia - they're not the same person and many times it's hard to adjust. Start small, and work on some redirection techniques. That alone should give you some other ways to handle the situation and make it better for both of you.
I was starting to yell and not be very kind with the dementia increasing with my mom. She did notice and said you are not the same as when I first came. Then I said, you are not the same either mom. My mom started to need constant watching so I just admitted her 4 days to a nursing home alzhemiers unit. I was so upset to do this but she was only walking around and talking and ripping magazines. They said that she is adjusting beautifully and already made friends and not even asking about me.She is so busy with activities, and is not ripping magazines. At least this is a place where she can be herself and feel safe. I think when you start yelling and seem like you are mean all the time, which you never want to do its time to let them go to a facility. I am finally released from her care 24/7 and its time for me to enjoy my family and take care of myself. It was a very hard thing for me to do, but it was the right thing.
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.
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.
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.
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 !
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
have our breaking points. I agree, the controlling, demanding and sometimes mean person they were before dementia/alzheimers IS still there and it is only magnified with that condition. We do NOT have to tolerate those behaviors and if you get mad, that is ok. They won't remember it 10 minutes later anyway.
Out of desperation I have started my mother on a rather expensive supplement called Prevagen (generic name is apoaequorin). This is not meant to prevent or cure Alzheimer's or other senile dementia, but is supposed to improve memory and cognitive powers. The glowing testimonials online come from people younger and more aware of their problem than my 93 year old mother, but I'm not expecting miracles. Just hoping for enough of an improvement to make her a little happier and caring for her a bit more pleasant. I'm giving it one month/onebottle to assess the results, if any. If this isn't another over-hyped magic bullet it sounds like it would be good for all of us, but I'm not paying $60 a month for this stuff until my husband threatens divorce LOL!
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?
Sometimes there is a sense of relief for both parties when the fracas is over. It never is one-sided. It takes two.
A little background: I am the oldest of four children and the only daughter. My father and brothers always let Mom have her way either by staying out of her way or going along with her. I am the one who would contradict and defy her, but she also tried to control me more than my brothers. My mother is the very definition of Control Freak and it has only gotten worse in her dotage.
My dad passed away 10 years ago. Mom lives in her own home in SW Florida, strong as an ox and still getting around on her own two feet, however utterly incapable of handling finances, medical appointments, hygiene, etc., or remembering what she said two minutes ago. Her care is divvied up among me and my brothers, because there is no money left for professional elder care. (Once upon a time my parents were very well off, but they completely blew their finances.)
Unlike some of you who see a stranger in place of the parent you used to know, like caregiver14 my brothers and I are seeing attitudes and behaviors that were always there to some degree, but are becoming more and more dominant. (Oh, and coincidentally, she also sorely needs a hearing aid but refuses to accept that reality.) The sad thing is that my mother was a good and caring parent with many wonderful qualities, but in old age has sunken into bitterness, anger and denial, much of which I believe has to do with suppressed guilt over the mishandling of finances and the enabling of the very dysfunctional lifestyle of her youngest offspring who in turn enabled his abusive alcoholic (ex)wife.
I could be bitter about having to pick up the pieces, but I am working on forgiveness and trying to provide end-of-life care and comfort for my mother the best I can. Unfortunately, one incident like what happened this evening is a big setback for that goal.
Start with a genuine, "Why are you doing that?" for example. The answer might surprise you. My Dad was moving his recliner up and down for 10 min. It is very noisy, but he is mostly deaf. When asked, he told me he thought the control for the chair would change the TV channels! He use to be so very smart, but now, not so much.
Sometimes I can offer two acceptable alternatives. He loves candy, but also loves fruit. I can offer a bowl of cut up fruit or a frozen fruit juice bar instead. This almost always works.
Keep in mind, although the person's body looks familiar, the person is not the same as before. They may even have changed from yesterday.
I find humor helpful. When it becomes overwhelming, I think of it like living in a strange comedy. When it is very overwhelming, I read these comments and think, "Thank goodness Dad is doing better than that!"
Almost NONE of your mother's behaviors or statements having anything really to do with you. Keep reminding yourself of this.
You have to realize that if the person remembered they just asked or said something they wouldn't repeat themselves. Yelling at them does nothing for them and makes you feel badly about yourself. And why yell? It isn't going to change the fact that they don't remember.
I've been involved for 7 years in the care of my mother with undifferentiated dementia and her boyfriend who has depression and OCD issues, going to their home four or five times a week to prepare meals, refill pills, do shopping, etc. They are both heavy smokers, her cigarettes and him cigars, so the house stinks terribly and I really can't imagine what will happen if they can't live in their own house and smoke. So it goes.
Hugs to all of you on this site, :-)
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