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A while back Jewels wrote a bit about her caregiving role. She said she's caring for someone who "wakes up cloudy about what happened or who he talked to yesterday...", and that she "has to remind herself that this disease is not who she cares for, but something the person with dementia has to deal with." I think I know what Jewels was trying to say and I have another perspective that can be helpful.
The anger, frustration and impatience you often feel as a caregiver is normal and you've every right to own those feelings. Yet when you fully accept Alzheimer's or a similar dementia, you can begin to separate the disease from the person and the person from the behaviors. If you're able to do this, you can move toward knowing that the real truth is this: It's not the person you love with dementia that you're angry or frustrated with, it's the disease.
Each of you in a caregiving role can have feelings of anger, frustration, impatience or resentment. But when you place the blame where it belongs — which is on the disease and not on the person — healing can take place. And by accepting that you can't change the person with the disease, you can gently and with compassion transform yourself.
Please share your thoughts and experiences.
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I am looking to get my son some home health care with a nurse that will come to us. He is so young and hates going to the hospitals so many times a week. We figure if we have them come to us, he will feel more comfortable and at ease.
My mother is diagnosed with Alzheimers and she is 61 years old. I live 3 hrs away and my stop father is her primary caregiver for her. I'm so angry at the disease for stealing her memory and brain. I'm still believing that God will heal her and thank God for her healing dailying. She was in her right mind last night when she told me that it hurts to not remember her wedding 12 yrs ago. I could have cried, but just told her that I would be her memory until she regained hers. My brother lives 4 hrs from her, but doesn't call her often. I think he is having a hard time dealing with her, but I just can't give up on her. We talk every two hours daily until it's time for her to go to bed. Her husband and I text daily to stay connected. I'm a little scared and overwhelmed, but I'm not there like my stepdad. I feel guilty at times because I'm not there, but I know I can't stay in that frame of thinking. I visit her at least once a month because I still work. Please keep my mom in all or yours prayers and I will do the same for you. We are in this together with the grace and love of our Lord and Savior..
I am the medical POA for our Mother, she is in the final stages of Alzheimer's disease. I'm in contact with hospice on a daily basis and trust what they are doing is in the best interest of Mother. My problem is that my siblings second guess everything I tell them, talk among themselves behind my back and can't accept the information I give them. I was the primary caregiver for the 5 years she lived with me. She is now in an assisted living facility. My siblings lived 6-7 states away and visited her once a year.How do I handle this?
I'm doing a research project on Alzheimer's I reallllyyyy need a last name from Kay. So I can cite one of her quotes.
Your article must be emphasize to all the caregivers. In the first place why would caregiver roles feel anger, frustration and impatience with people with alzheimers. In the first place they must think about their job description and they must empathy how people feel about alzheimers. You are right that don't blame the person, balme the disease.
When reading Kay's words I thought I was reading about my own Mom. Self-absorbed. So much more so now. She is arguementative and can be very hurtful at times. I have two sisters and one lives with my mom and the other is waiting for a heart transplant and can no longer deal with my mom. I understand. I stay with my mom 10 hours a day while my sister works. I feel much anxiety the moment my eyes open. We are keeping her in her home for as long as we can. She is probably going in to moderate stage as I see many symptoms..I'm am hanging by a thread.
My husband of 60 years was diagnosed with Parkinsons about 1 1/2 years ago. he is taking sinnemet prescribed by his neurologist. he has hallucinations at night. He thinks a cat or animal is in the mattress or he thinks bugs are biting him and he has the sensation of water in his shoes or that there is water under the carpet or floor covering in the kitchen. I try to reassure him that everything is ok. I don't think he believes me though.
My husband has alzheimer's disease. It is the hardest thing I've ever had to face. I am trying to care for him at home, alone. He falls a minimum of 2 times a day; refuses to use his walker; roams all night; sleeps most of the day. I am still working part time and have a sitter with him during that 18hours a week. These 18 hours are all that is keeping me sane. Like one blog, I read, I don't know how much of this is the disease and how much of it is the personality. The one big difference I've noticed is the foul language he uses with other people (the fire department guys who are providing lift assistance for me). I wouldn't blame them if they refused to help him get up again.
Thanks for this blog page. It helps just knowing there are people out there who understand the frustration, the anger and the guilty feelings that caregivers have.
I am not sure I am in the right spot for this. We have noticed recently that our Mother who has severe alzheimers gets very agitated and upset when movement is involved. She does very well when sitting in same spot and talking with someone but getting up to stand with her walker or trying to use the toilet etc. bring on very strange reactions. Could this be something to do with equilibrium? Any other ideas?
claudia i feel your pain. everyone tells me to blame the disease but when my 85 year old dad attacks me because i ask him to take his medication it is hard.he "wandered" for the first time yesterday and it broke my heart.we found him right away tg.i have a sister but she refuses to help,although she wants my parents "things" when something happens to them.my husband and i work to help with my parents bills and they live with us.we are now trying to find a gps watch for my dad.it is so hard sometimes and it is so nice to know i am not alone.
Taking care of the caregiver is just as important as taking care of the patient with Alzheimer’s. Alzheimer’s is an ugly disease with no clear direction of manifestation. Therefore each day can present new challenges and new short comings that can cause a lot of stress, sleepless nights and moments of doubt. Lean on the help of others. Adult day care centers like Active Day (http://www.activeday.com) are all across the country and specialize in helping patients with Alzheimer’s. This type of assistance can be a wonderful program for the patient as a means to spend social time with others, receive medical therapy and treatment, while also providing the caregiver a stress-free break from their busy days. Consider adult day care for your loved one with Alzheimer’s.
As a child of a parent w/ dementia, it is so important to blame the disease. My mother constantly blamed my dad's years of having a drink at night on his loss of mentation and found him at times "deserving" of his plight w/ dementia. This was so very difficult on me and my siblings. Thanks for the tip and while some lifestyle habbits do contribute to dementia, it still doesn't change the reality of the situation of the current. Please don't blame...be part of the solution and if you harbor anger get professional help for yourself.
I know the blame the disease and not the person and I normally adhere to this but sometimes the attacks are so personal and so mean and they hurt so much.
I some times go on a rollercoaster of emotions in just one day while caring for my mother with early-mid dementia. I am not being mean only truthful. She has a life history of being mildly self-absorbed, vain and argumentative, so much so, my older sister wishes nothing to do with my mother.
I know my mother can be difficult but she is still my mother and I try very hard to be patient/loving. Its difficult now, to tell the difference between her illness and her personality. I had to insist we go to the ER the other day- huge argumentative response- mean spirited the entire time. I was correct- the ER docs figured out the issue and she is MUCH better. She refused to see her fam. MD last week when I made the appointment so we ended up in the ER this week. Its hard as she was unkind to me, never thanked me for taking her, spending my entire day there without food- coming home to get her to bed then start my farm chores at 7:30 pm with her arguing the entire time. I just choked it all down as I don't know what is the disease and what is just my typical mother. I feel resentment and hurt, but also compassion for her. It can be emotionally exhausting some days to be caught in a zigzag.
I can relate to Amy's letter. My Mom had a fall recently, and I felt I'd failed her. Luckily, she has remained very pleasant with her dementia, and told me not to worry, she'd be all right. It's hard to see my best friend and Mom have her life stolen away by this disease. This is the hardest thing I have ever had to deal with.
My mother is my fathers caregiver. He has been diagnosed with dimentia/alz for a while. The progression is slow, but gradual. The anger and aggitation have increased. He recently told my mother he no longer loves her. I can see the disease, but she can't yet. I've recently moved in with them and feel it is good for her, but sometimes I feel helpless. I don't know what to do for her. I want her to find some kind of peace. I know every story is different, but please tell me what to do!
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This may be the first generation facing the dilemma of their elders surviving various illnesses--using modern medical care--only to reach a state of mental decline. People in middle age now are growing fearful of saddling our children with the care of legions of long-lived parents--us--suffering from dementia. There's a world of difference in caring for a frail person approaching 90 who is mentally alert and emotionally stable and one who is not. I know because I have one of each in my life.
Unfortunately, with the drive to financially successful to the exclusion of human values, the focus has been on caring for one's self and not the "other". I guess I may sound a bit old fashion, but look at what has happened in the finance industry.. A bit off point here, but I just wanted to say that I share many of the frustrations here, however, tend to think that everyone's situation is unique, thus requiring different strategies and solutions. When I find my self reacting, I have to constantly remind myself to step back to gain some perspective. I am discouraged by how there are so many that think they have no obligation to parents and loved ones. It is morally and ethically wrong. I don't necessarily follow a particular religious path, but I do think that there are (or should be) moral and ethical consequences to those who think and act selfishly. That said, I know how difficult it can be.
Hello Terry Lyn and others--It is heartening to see that there are those who possess kind and selfless values. I am unmarried to my partner of 16 years, but feel that if I do not care for him, then no one will; not even his very wealthy physician son. I am most angry at those who have chosen to divorce themselves from any responsibility. While I know that exposing him here would do more damage than good, I do wish to expose his cruel and abusive actions as a way to raise his consciousness. I suppose that it sounds vindictive, yet I think that it is more akin to "just rewards" to those who are selfish.
So, Terry Lynn, how does your husband feel about it?
Thank you all for sharing your thoughts and feelings. I too take care of my 92 yr old mother in my home. She came to live with us 2 yrs ago and has just been diagnosed with multi-infarct dementia and maybe alzheimer's. My husband and I are recently "empty nesters"and sometimes I feel that this is a burden and I should be spending this special time in our lives together, without the constant drain of caregiving. Then of course I feel guilty! It is difficult when so many friends and family say I should not do this. I should put her in a home, It is too difficult and my health will suffer. But I can't leave her where she is not loved, where she is surrounded by people with the same disease. It's difficult to know if her living with us is the best for her. I think it is but then again?
It is with interest that I read your comments to blame the disease. This is what I have also dicovered. Yes I do have feelings of resentment and impatience and then of course afterwards I feel guilty. I find that this disease is turnig me into a person I don't like because of my reactions to it.
Please know, Angela, what a service this discussion forum is to all of us trying to help our loved ones maintain their dignity and sense of self through this illness. I feel myself anxiously awaiting any new words of solace and encouragement. Someone told me recently to try and stand back, not take things personally, and try to observe with a sense of wonder one of life's many stages. Thank you
Thank you so much, Kathy for you kind words and advice. This allowed me to have a good long cry which I needed. Unfortunately, I read what you wrote and suggested that I get into a support group to which he only became angry. He is in complete denial and is very controlling. He does not want anyone to really know what is going on with him and our circumstances.
To Amy, Alma, Donna and others who wrote about the guilt they feel - I once heard a Psychologist at a conference on dementia state ‘we feel guilty because we love. If we didn’t love we wouldn’t’ feel guilty. And the more we love the guiltier we feel’. Be kind to yourselves out there, you are experiencing a natural human emotion. Believe that you are doing the very best you can with the circumstances you’ve been presented with.
Some thoughts for Sharon and her partner: It was almost 9 years from the time I suspect my husband's dementia began that we finally gathered the courage to go for a geriatric assessment. The program we found had 5 medical people interview us over a 2-hour period, and I was stunned to hear my husband say, "I haven't felt that cared about by doctors in years." We found that he'd had a stroke. There was so much anger and resentment and difficulty, and I resisted going to a support group for a long time, but that group, along with the doctors and the Alzheimer's Association, became lifelines. Almost all of us have found that the love we thought we had from much of our friends and family turned out to be incredibly conditional. Abandonment by so many you thought would be there is commonplace--I also found much deeper love and kindness from some family and friends and neighbors and former strangers. Early on. one of my brothers said, "I don't know that I would have the courage to face this as he does," and that helped redirect my focus off my despair and help me perceive his courage and perseverance and desire to help others by participating in studies that search for a cure. 9 years after the diagnosis, I struggle every day with whether or not I'm doing what is best for him and whether I can survive. I have been blessed to find that many people respond to my love and respect for him and do the same--those who abandoned remain feeling justified in their
Mine is a tragic story about a man with whom I have lived for 16 years. Apart from some stressful and unfortunate events that impacted his life at the end of a 27 year career as a Ph.D professional, I am sure that he has Alzheimer's or something like this. I have not pushed for a diagnosis since he has always said that he would commit suicide if he were ever diagnosed with Alzheimer's disease. I also believe, that despite the practical implications of a diagnosis, that once the diagnosis is made, it serves to hasten the demise of the person with this tragic disease. I have tried to live day by day, caring for him in ways that I never imagined would be necessary at his age; he is only 67. We are isolated and with the drastic changes in his personality and health, there are few who really want to be around him or even talk to him. Our neighbors who used to let us care for their animals while away became "concerned" about his involvement in caring for their animals and now no longer even speak to us. My life-partner's only son, who is a Harvard Educated Physician has cut off all communication with his Father and will not even speak to me. The first blow came on Father's day when his son called, but refused to put his 6-year old son on the phone to speak to his Grandfather. We had been invited to visit him in Colorado this summer, but the lines of communication were severed and we were not allowed to go as planned. His son as refused to help with his Dad's health.
One more thought for John. As we researched living options we discovered that some retirement homes are independent living; some are assisted living with limited assistance, and some are transitional, e.g., as the needs grow, more services are available. Of course these are more expensive. (These are not care centers.) You should know what is available in those lines even if you just move to an apartment without stairs. At some point things may change again. Your children need to be involved.
This is the most useful advice I have ever come across. I no longer react to Mum's out of character behaviours.
We have recently placd my Mother into care which is excellent. My friend and I visited her on Tusday. She abused us as soon as we walked in the door. She was volatile. I did not overtly react - just a tear in my eye as I walked away and said to myself: "That's not Mum talking, it's the disease".
John, You are doing well to consider your options now. There is no stigma in moving to where you and your wife can receive assistance. Your children will be very grateful. I have two friends who chose the assisted-living community that suited their needs and are happy with their choice. My mother-in-law waited for a crisis and is not very happy with our choice for her.
After caring for my mother years I can honestly say it was the most difficult job I ever tackled. Also the most rewarding. I some times worry that I will have this dread disease.
John, I think it may be in your best interest to move to a one floor house on your terms, rather than be compeled by a turn of events. No basement, therefore no stairs to fall down. If compeled, then you may have to act quickly and that may not be the best situation. Perhaps speak with a Realtor. (In full disclosure, I am a former Realtor). I don"t feel qualified to suggest a house or a full-coverage-facility. God bless
I am so sorry, John. No one can know how long before you should move except you, but you should be researching. I spent seven months helping my friend visit various facilities before she decided what was right for her. Your daughter should be very much involved. I doubt that either or your wife are ready for a full care facility, and how would you convince her to move if she won't even get tested? My husband wouldn't get tested on my advice, but a doctor talked him into it. Good luck.
My wife and I are in our mid-80s, both of us with leg
ailments. Other complications include her high BP and my diabetes. I am also concerned about some indications of mild cognitive impairment in both of us. Our two children are also aware of the situation and encourage us to keep them informed. Our daughter is close by, but our son lives 100 miles away.
Our major issues are: 1) How long before we need to move from our town house with stairs up to the bedroom and down to the basement? 2)Shall we move to a single floor apartment or a full-care facility? 3) How can I convince my wife to take a memory and cognitive impairment test our doctor has recommended and set up for us in three weeks time?
Has anyone any suggestions?
My husband is only 69 and was diagnosed with Alzheimrs 3 years ago. Someone once told me that I have been given a great gift -- one of caregiving for a loved one. I've often heard of something similar being applied to young parents faced with the birth of a disabled child. That thought helps during difficult times. And I remind myself that we are both lucky I am able to fulfil that role. I admit there are moments when I'm on the verge of losing it, like when I ask him to do some little task and he responds angrily "I have to do everything around here." I know we have a long, hard road ahead, but I keep reminding myself of how important I am to him. If the shoe was on the other foot, I know he would do no less for me.
I take care of my 80 year old father who has AD. I love this man so much. I have an overwhelming compassion for him and want his care to be perfect. My father has recently had to have a catheter placed in him as his brain no longer instructs his bladder to empty. This has been a very challenging adjustment. I awoke at 2 a.m. recently to find that he had yanked his catheter out. Needless to say the carpeting in his bedroom is ruined from the blood stains. I cried and cried and felt such guilt over this. I just couldn't hold back the tears and when my dad said to me 'honey why are you crying?' it just made it worse. I simply said 'dad I'm supposed to take care of you and look what I allowed to happen to you'. He got angry and said back to me 'you do take good care of me so you need to stop crying.' It took several days and many prayers for me to get over the guilt of this. I know I cannot stay awake 24/7 but I still felt responsible. But he is now finally adjusting and getting used to this foreign object in his body. Although he doesn't understand it he is dealing with it better for now.
I work a full time job so my brother sits with my dad while I am at work. This gives both us of a break away from this horrible and sad illness that is robbing us of our father.
Thanks Edith for the video you posted and thanks to Cathy for sharing your poem. I am going to print this poem and post it on my refrigerator as a constant reminder to myself and to my brother.
I should amend my last letter. I should have said that it is totally out of character for him as he has always been so suspicious. It actually may be in character for him because of his "tightness" or greed. If anyone offers him a million dollars, he will get out his wallet. I think I'll have the mail held for a week or two and pick it up at the post office until I can figure this out.
Here is the question and the frustration. When the patient's status is in a constant state of transition, how can you know what actions to hold him responsible for???
Here's another question. My husband just sent another $25 CASH to scammers in the mail. I can't hold him responsible for this as it is totally out of character for him--he's always been so tight. Just tell me how to stop him. I've sent letters and "DNM" (do not mail) letters, I've contacted the direct marketing association, I tried to physically stop him and have bruises to show for it. I've confiscated his mail, but can't stop every letter. He's in the moderate stage.
A wise person learns from their experiences, the wiser from those of others.
My thanks to each of you for sharing; helps provide a road map for me. I will add you (collectively) to my daily prayer list.
Today is our anniversary, 60 years and 7 months (yes, we still count the days).
Initial diagnose was 14 monthsw ago, after extensive testing. We should have sought professional assistance earlier. I think her meditation may be beneficial, hard to tell due to my inexperience. Three daughters, three sons-in-law and seven grandchildren live within blocks or a few miles and all are understanding. I have seen, hear or experienced enough so that I well understand the strain, particularly on those with little or bo assistance; hence, my deepest admiration for those who carry the burden.
Of all who have ever walked the face of the earth, she is the most wonderfuk person I have ever met, second to the Messiah. I love her dearly.
God bless - Vaya con Dios.
Wow! So many of us are dealing with the tragedy of what is dementia/alzheimer's disease. I do blame the disease but I feel sorry for my mom who is only 63. She has not turned violent with me but tended to be very defensive with my older sister that died from cancer. Mom now lives with me and my husband. Her steady decline, despite medication, is disheartening. I'm glad I read Richard Taylor's book "From the Inside Out." It has given me perspective and some understanding of what everyone is going through. I wonder until when I'll be able to take care of my mom and not succumbed to my own autoimmune disease. My mother had no financial stability before and lived in the projects so when I decided to take her into my home, no one batted an eye. Everyone starts pulling punches when there is money to be gained. Not to say that money is not needed because I still have to pay someone to take care of her while I still I'm able to work. In a way, I am lucky because I have a younger sister who helps me out. We are closer than ever. Dealing with taking care and losing our older sibling has brought us together. Now we just want to be there for our mom. My father is not in the picture because my mother divorced him years ago. I believe he might be fading as well into maybe some dementia but I cannot deal with an extra load on me and my younger sibling has two infants. I pray that God give me the strength to push on forward because if I stop believing in Him, I would
I've been a 24/7 caregiver to my partner of 29 years for the past 2.5 years. He used to be so vital, full of life, and eager to share his knowledge. It is sad and frustrating beyond description to watch the slow disintegration of the person with whom I have spent so many years. Now, among his many other maladies (macular degeneration of both eyes; throat cancer, loss of hearing, etc.), John no longer speaks in what is considered a normal language. His only "communication" is a "clucking" sound. He no longer understands me when I ask even the simplest question. He has also lost his "social graces", as if he were a child. This, from a person who was highly educated and worked as a physician for more than 35 years. Now, I often feel as if I am merely a servant to a complete stranger, not remembering that it is the disease causing John to exhibit these changes in behavior, not a deliberate choice on his part. So, what can you do except continue to learn from the experience and push on. It has been difficult, but as time passes, I have begun to accept the changes in our day-to-day relationship and try to keep a positive perspective on life. I have finally realized that there is nothing I can do about John's affliction with Alzheimer's, and to paraphrase Angela Lunde's article, one should not [and must not] blame the individual for the pain, anxiety, and frustration one feels, but rather the disease. The person needs all of the love and supp
My mother is 97 and has been in the nursing home for two months. The anger she takes out on me and been most upsetting. Reading you comments has just made me realize she in the early stages of alzheimers and your comments have been most helpful. I am just so thankful she has had a good mind for a long time.
My husband and I just got back from our weekly Saturday outing with his mother. Things went well until the last twenty minutes when she started her guilt-inducing litany about going back to prison. Even though my 88 year-old mom lives with us and limits our option to care for an additional person, and my mother-in-law's doctors have said she needs 24-hour care, I still wrestle with the guilt about our decision to move her to a care center. I still take my mother-in-law to get pedicures, haircuts, and all her medical appointments during the week--or just out for coffee and a muffin. Since I am the family member who spends by far the most time with her, I'm the one she gives the most grief. Her other children live a continent away. Luckily, they never criticize any of our decisions. Reading everyone's posts here really helps me know that we're all struggling with this together. Thank you to all of you for sharing your thoughts.
In reading some of the blogs, I did not come across any showing the same things that daughters and son in laws go thru even though their parent lives in an Alzheimers' facility. We visit my Mom every week and still get the same responses from her that most of these bloggers experience. It still hurts, even though she does not live with us. I have one sister, who is completely removed from this and also is into early onset Alzheimers herself. The hurt and guilt is still there daily and I would love to see some comments from someone who has dealt with my same situation. Any ideas to get rid of the guilt? I can cope with her meaness knowing that it is the disease, but everytime we leave, she says "I would never put my Mom into a place like this!" She thinks we could take her home to live with u, but all the doctors and nurses say we could not cope with this disease at her stage of it. She is almose 88 years old this September. Any comments welcomed.
I try making my mom as independent as she can possibly be. Yesterday I had her make a shopping list and off we went to Bartell's and our local grocery store Tops. She also uses her shopping time for socializing...4 hours later she's done and I've had my fill of latte's and reading every magazine in display. After I squeeze-in the groceries in my truck there's barely enough room left for the 2 of us! I try not to think about the 4 hours I had to wait, but instead laugh when I can't even see a sign of my mother sitting right next to me. It's tough having to give up independence when your kids grow-up and leave home and your parents move in as 6 year olds, but laughing helps! I have a cousin who also is caring for her mom/ my aunt and we share our upsides and downs and that helps alot. My cousin has taken over the role of "sister" and we also have a friend who lives in NYC that we chat with everday! If I didn't have anyone to share and vent with I would be miserable...I highly recommend it! When my mom treats me like the enemy it's hard and it's hard to beleive that they don't mean what the say, but I try to Live-Laugh and Love and it Does Help! I know that I will miss my mom when she's gone, so I try to focus on that too when I here her talking about the Dirty Devil; the nick name she has given me and try to tell myself "she lashes out at me because I am the only one here" besides my husband who helps some and holds me up too!!!
I try so hard not to get angry at anyone - not him nor the disease. It's so hard being the only one to make decisions and to drive and to do every day!
My biggest concern is not catching the next step in my husband's illness. When I would wake up during the night I would find him sitting on the edge of the bed. I thought it was because he sleeps so much during the day! Wrong!!! I finally realized it was because he couldn't get his legs up on the bed. Because this doesn't happen all the time I sure missed an important happening. I feel so bad when I miss helping him. Donna
Dear Marilynn, Both my parents had a difficult time letting go of driving...my mom actually renamed me "the dirty devil" and had all her friends mad at me for taking he license away at 85. With my dad everytime he asked for his car I'd tell him that it was in being serviced at the dealership, but with my mom I told her that my sister's car was unsafe and she should give her car to her before something bad happens. This is the sister that never comes to visit my mom...HMMMMMMM! Anyway this might work for you! Also changing the subject real fast can work too! Good luck...we don't do this to be mean because taking the car away also means further loss of our independence, so it's not something that is easy on anyone. It would help if the DOL would require people after the age of 60 to take a driving test when getting renewals!
I regret not taking advantage of this information and support groups when my mother was going through the decline of this disease. I went through all the misguided efforts of trying to bring my mother back to reality with repeated explanations and questions. It took me over a year to get to the place of acceptance of the here and now of my mothers mental state--not without frustration mind you, but much less anger. I was upset and shaken after each visit until she got to the severe stage. Then it was different, she was no longer even a shadow of who my mother was and I was able to be with her on a totally different level. She was in a nursing home by the time she got to that moderate to sever stage so my experience was much less traumatic and stressed than those of you who live with this 24/7. The social workers at the nursing facility helped me with trying understand the process and how to be with my mother without getting wrapped up in the dementia. Not easy even for a professional as each person goes through the stages differently. Stay with these blogs people, each one of us can help each other in so many ways with our individual experiences. It's a long hard painful road watching a loved one disappear no matter what.
My fathers daily thing is his car keys and not being able to find them or the car. I will tell him over and over and over he has not car keys and the car was sold a long time ago. He says no it wasn't and then says he has two cars he can't find and what did I do with them and the anger starts. He gets in my face and starts screaming at me. I have to admit at that moment I'm not angry at the dementia I'm angry at him.
It is affecting my health now but a nursing home is not what I want for him. How can you possibly disconnect your feelings and calmly say it's the dementia and not the person when the person is clintching his fists and screaming in your face. Your first defence is to scream back. I have to leave the room to compose myself but the anger still remains all day. It is so heart braking to spend the last days of life of you loved one in this manner day after day after day. What keeps me going is that every once in awhile I can see the real him shine thru and my hope begins again. I love him and he was once the greatest Dad around. This is such a cruel
disease for all!
In response to Mary's comment, here is a flash movie about an Alzheimer's patient's feelings... they know you as caregiver are around and you care :
My wife is only 51 and has suffered from early-onset AD for some two years now. The progression of the disease has been awful, I am slowing becoming emotionally divorced. The strain and angst is monumental at times. The slow 'death' of her personality is terrible to witness, particularly for our two young sons. To all of the caregivers everywhere, may heartfelt thoughts are with you all.
A big thank you too you all for your comments.
You all make me feel not alone.
I care for my mother-in-law with Dementia and possible scychoprenia as well and it is so nice too know I am NOT alone.
Having worked in Resthomes has made it easier for me too care for her but for me loneliness is the hardest part for myself. Thanks again each and everyone off you for sharing with me. Love you all
You all are amazing...I can only think that God has special plans for all of us down the road and it won't involve caring for anyone ever again! Everything that you all have shared lifted my spirits and made me feel so not alone. This is an amazing blog and it helps sharing with people that can relate! God bless you all! Jeanne from Woodinville, WA.
Thank you for reminding me of that....sometimes I forget.
My husband and I have been caring for his mother since Dec. 08. Every day is an adventure. This week my husband was put in the hospital because his heart acted up. His brother was suppose to be here at 9 so I could be at the hospital by 10 ( it is an hour away) He got here at 10:05. Him and his wife are suppose to be here in Aug. because my husband is having his bladder removed because of on going cancer. I'm not sure they will be here in time for us to get to hospital. The whole just ticks me off. By the way I spent 5 years taking care of my mother. She did not have Alzheimers. Her body was crippled with good ol arthur
Cathy, I love the poem and will read it daily. I'll also share it with my support group. Thanks so much!
I know what you are going through because I work in a facility where patients are constantly asking you why am I here? Have I been here long? When is my family coming to see me? It is so heart breaking when you have to repeat the same thing over and over to them but you are right it isn't their fault, it's the disease. I really wish there was a cure and that people in general did not have to go through this day in and day out. May God bless you and strengthen you each and everyday. Stay strong and trust that God will bring you through this, I know He will.
I continue to pass on these helpful comments to my siblings. I am caring for my dad diagnosed in October with Alzheimers. I tell myself daily its the disease, my siblings are supportive, but they all had the same reaction "he can't come here" So I left my job and moved home. Daily we go through the ritual of whats for breakfast although we just ate, the list gets longer but it is helpful to know that there are others who also go through the day with all the repetitive questions and annoying behaviors, the anger if you don't let him do things that are really bad for him. So thanks for the prayers, and the helpful articles, I pass them on. I pray for all of us as we love the ones who loved us first. Thanks to all of you
Thank you for the prayer that you wrote, and the prayers you say for us that we don't know about, I'm a firm believer in the power or prayer. It hasn't done anything to change my family and all the pain they've caused me, yet. But I know God's time is not ours and that He will take care of us and them in a way that will make all things come out good.
My mom had a stroke and I went there to rehablitate her. While I was there my father's bipolar disorder became extremely apparent. We had tried for years to get his behavior diagnosed but he would run away once he became aware what we were 'up' to. He saw any mental disorder as a weaknes and thought if they got ahold of him they'd find out he was totally insane and needed to be in the insane asylum. My mothers aunt died in one. They both always feared things like that even though they don't have them really anymore, not like the one she was in. Then he got alzheimers on top of that. I would carry mom all over the place give her baths, change her, dress her, etc. and dad would ne crabbing at me for the craziest things. But it was the way he'd always been. I warned my sisters that people say that, when when people get old and have mental disorders, their loved ones say 'they were always like that' because they look the same, the behavoir is the same as when they were angry but they seem to lose any redeeming qualities. They didn't listen to me, and I was right on par with that one. Except they didn't listen.
It is easy to say "blame the disease and not the person" which I understand, but it doesn't always help with the moments that drag on for hours - for example last weekend when my mother was insisting on telling me how their "television now has colour" and that they have never had colour before and they can't fix it. No matter how patient I was with her and empathised with her, and then tried to change the subject or even end the conversation about the same matter, she would not give up for hours and got herself so worked up she was almost hysterical and crying about their television. I see now why my dad is so exhausted looking after her but he refuses to get assistance (although she is on medication) and I can see him fading faster. I can handle the repetitive conversations or the quiet blank moments when we walk around the garden and just chit chat literally about things that don't quite make sense, but it is the high stress times that she builds up in her mind and then can't let go of that wears us all down. It is such an unfair disease to see this once vibrant woman whose personality has changed so much and is now fading into a shell. I have had so many quiet tears.
thank you for the article.
It is heartbreaking to see what the dis-ease can do to family. It is very sad to see a dementia person not recognizing a family member and attacking them; very frustrating to see what it does to a very beautiful person. Day by day, weeks pass n you start to see an empty shell of what the person used to be. There are moments when they become their whole selves again n it is a moment of rejoicing n blessings. But as the dis-ease gets to the critical stage, they become a shadow.
Medications are increased to manage any abusive behaviors and other symptoms. I hope and pray that other holistic alternatives means can worked side by side with the western medical knowledge to help, prevent and maintain the health of people affected by this dis-ease.
It is not easy seeing someone you are taking care of going thru the stages. I really feel sad, helpless. It is painful to see the struggles family members go thru. I am deeply moved and touched by how they faced these challenges everyday.
Each time I visit my dementia clients, I pray a little prayer and hope that despite the empty and blank expressions on their faces, they know someone is caring for them and that they are not alone. They do not have to fear. I guess deep inside them they must intuitively realized and sense their nerves are not able to send and receive messages as nerves are supposed to do. They panic and love is very important here. It allays their fears n gives us strength.
Jeanne, Try to have your sister spend just a week,no just a few days with you and your mother: welcome to the real world sis!
Dear Jeanne, I just read your post about what your sisters are doing, I hope you find some solace or at least in reading what mine have done to me was 100 times worse, after giving my body blood heart and soul for years, my sisters and brothers just deleted with their jealousy or greed or whatever it is, I think I came close to a nervous breakdown or I guess they call it psychotic break now, but it is horrible whatever it is. Like the whole world is against you and you begin to doubt yourself, think you are crazy, wonder even why God would allow such a terrible thing to happen. Please hang in there and if you need to talk, come back here or write me or call me, I have been home 2 years now pulling myself back together, and did more research these last couple years than all my years of school or college. Get info like this and send it to your sisters. keep a log of everything, and don't let it be where they can get it, my sister threw away all my nursing notes, all my parents medical recoreds, she's just insane, But there's lots others out there.
I wish I could have had access to a computer before I went to live with and care for my parents, I have been an RN for years and I understood both of their bodies better than my own. But when their minds started to go and they were attacking me, I did understand to seperate the behavior from the person, fortunately that was a rule I lived by when raising my child. But I didn't know how to make my siblings understand that I wasn't stealing from them or hurting them or any of the terrible things they would accuse me of when I got the chance to take a break and go home, i had no idea that my sisters were believing these things and using them to take over. I ended up being a scapegoat for everything and anything, one sister had been such a good friend for all our years together and just stopped talking to me. I'd ask her what was the matter? What are mom and dad saying, because, you know it's the disease. They chose to believe our parents and make me out to be the bad guy. Made my parents think I was untrustworthy and I lost mom 2 years before she died. My father gave them the power of attorney and executor to his estate, while I was getting caregiver burnout, they were taking my parents money and stealing my inheritance, The "things" I can live without but mom was always my best friend, To lose her trust and love almost killed me. What out folks, this disease affects more than just the people with it and their caregivers.
My heart goes out to Jeanne and all of the other caregivers who are criticized and rarely thanked for all the help they give their loved one. My mother has had Alzheimer's for 10 years; I've been living with and looking after her for the past year, when it became apparent my father could not do it alone anymore. I find it is rarely her that is the problem---yes, her repeating the same question or comment a dozen times a day can be irritating; yes, her taking all of the food out of the refrigerator when she's hungry, then leaving it scattered all over the living room and kitchen makes me sometimes cry in frustration---but Dad and my sister and brother, who all think she's "faking it" or is "perfectly capable of doing things herself." I've been accused of spoiling her, exaggerating the problem, and moving in just to take my parents' money. (If that was true, why would I give up my own well-paying job just to be criticized and to live amid my parents' clutter and filth?) I suspect my siblings say these things to justify their own refusal to look after Mom, while Dad is simply ignorant or in denial. Nevertheless, it hurts. It's easier to accept the disease than the criticism and accusations from people who are well and who should know better.
Jeanne, I can really identify with you. My husband was in his mid-50's when he began to exhibit symptoms of dementia. I didn't realize at first that he had a problem and tried to reason with him, which only made him respond with anger. He went to see a counsellor and convinced her I was abusive. She didn't catch on to the problem and advised him to leave me "because abusers never change". He moved out. We went to a couple of marriage counselling sessions and when he didn't show up one day, the counsellor took me in the office and told me she strongly suspected he had some type of dementia, that he had about half the symptoms on the Alzheimers questionaire and she observed that he was paranoid and agitated. Now he is proceeding toward divorce. We have a young teenager at home and now our life is a mess. He refused to continue with counselling and will not even speak to me. He is convinced I am abusive. Now there is nothing I can do to help. His family lives out of town and he has done a good job of convincing them as well. I have told his doctor what the counsellor said. It breaks my heart to see the man I have loved for 30 years this way and now there is nothing I can do for him. I just wish I had known what was going on sooner, when I might have been able to get him some help. Does anyone have any suggestions.
Thanks Angela. With a full court press on genetics we can banish many genetically based diseases. Lou
Very good article. My husband has vascular dementia. It is very difficult to not get angry at the person, I try even though I do know it is the disease. I still have a full time job. At this time, he is able to go to work with me and volunteer, but I fear time is running out for him to go with me. He retired where I work, a home for developmental disabilities. He is very comfortable there and everyone knows him. He does help but is very dependent on me and I find myself not being able to do my job. I fear that management will eventually tell me it's time to but him in Adult Day Care or else. We visited a day care center last year and he cried. I plan to attend a support group this month and investigate adult day care centers again.
I have very little if any support from his children. My family supports me totally as does my church family.
For all caregivers, I understand your frustrations, guilt, anger, and helplessness. If I could only blame the disease and not the person I would be better off. I pray for patience and sometimes I have more than other times. It's just not as easy as the article suggest, you have to walk in those shoes to truly understand.
Yes it is frightening and difficult.
Good luck to all caregivers and let's pray that a cure for this dreaded disease will come soon.
Here is a poem that we say at the beginning of each of our Alzheimer's Group sessions. I hope it will help all who read it here :)
Do not ask me to remember.
Don't try to make me understand.
Let me rest and know your're with me.
Kiss my cheek and hold my hand.
I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me.
Do not scold or curse or cry.
I can't help the way I'm acting.
Can't be different though I try.
Just remember that I need you.
That the best of me is gone.
Please don't fail to stand beside me.
Love me 'til my life is done.
Just what I needed! Many Thanks!
Jeanne, When I cared for my mother-in-law, she accused the help of breaking and stealing. She fired those I got in to care for her. When we found a beautiful assisted living facility (where we frequently visited with her) she told others what a terrible place it was. No matter what I did, it seemed that she led others to believe that I was not always there for her. It was a very difficult experience. She was the first elderly person I cared for. I learned a lot that I use now that I care for my own mother. I wish more information was out there to help us know what we might expect to occur. It is a frightening and difficult experience.
Yes, the disease, not the person causes the frustration, but the article doesn't help me to feel less frustrated when Mom's cycle of thought causes her to repeat the same thing for the 6+th time in a row. It doesn't help me to help her with this part of her experience, which she and I are unable to change. With each new decline, we've been able to fill it with a new 2nd lifeline, meals-on-wheels, neighbor support; but watching the confusion over 2-step processes develop brings the knowledge of what is happening so much closer.
What has been the hardest thing for me with having my parents live with me since 1985; is that my mom tells convincing stories that I'm stealing from her and that I'm mean to her. I cared for my dad who was partially paralyzed and suffered from PD and PD dementia for 10 years until he died in 2000. I have cared for my mom who was diagnosed with having a Bipolar disorder in 1978, breast cancer in 2001 and dementia and early stage Alzheirmer's disease in 2002. My neighbors, my children, some relatives and my very close friends know that I treat my mother with respect and love, but it really hurts that my sister thinks that I am terrible. My sister lives an hour away and hasn't seen my mother for a year. In the past it has been 4 or 5 times a year at the most. She refuses to believe that our mother has any mental issues even when everything has been diagnosed by my mother's doctor and specialists. I have been sending her many Mayo E-newsleters in hopes that she is reading about Dementia and Alzheimer's. It would mean a whole lot if she would give me some support; if only when she is talking to our mother rather than to feed into my mom's paranoia and making my job more difficult.
Ann, I so feel for you. My Mother had AD/Dementia. She lives with me and I have two care givers, yet I am so frazzled and edgy most of the time. And here you are in a worse position than I am. Makes me want to count my blessings! I shall keep you in my prayers.
I can really relate to this article. I think that I have begun to develop an understanding of the disease but unfortunately my brother still doesn't seem to get it. He thinks that if we threaten our Mother with being put in a care facility that she will cooperate or change her behavior. I know he is only reacting out of his frustration but I really wish he could try harder to understand that you can't apply logic to an illogical situation and expect that all of a sudden a light will come on for our Mother and she will change. I can see how this horrible disease can really tear families apart. Thanks so much for this great newsletter and the articles. It is a really important link for me to other people in my situation.
My husband has Parkinsons along with several other debilitating diseases, falls often and can't be left alone. I have had a caretaker partime so I can go take care of my 95 yr old mother who as dementia but don't have one right now so can't find time or energy to do for both, and both are jealous of time I spend with the other one and the hurtful remarks even about each other, much less toward me sometimes just about get me down. Praise God, I can still go to church for help and strength.
Linda, I so agree with your comments and experience as my dad, sisters and I also receive the same from our mom. Although we know it is the disease it is hurtful when she lashes out in words or action.
As you mentioned talking about old times or singing really help our time together. My mom loves the old hymns and remembers every word - it calms her spirit.
Thanks Angela for your advice and tips.
I can't give my husband a kiss, tell him I love him, and leave. I know the disease is causing the behaviors that drive me up the wall, and I pray every day for patience and a sweet spirit...but when he for the second or third time dumps the trash out of the trash bag and deposits all of the nasty stuff into the trash can, I find it very hard not to feel real anger and frustration, lose my temper, raise my voice, and do all the kinds of things I know I shouldn't do. Fortunately, he forgets it all very quickly; I don't.
I liked this article. And it is so very true. I know the behavior is the disease and not my father but it is good to have a reminder. I espcially took alot from the last paragraph about placing blame and acceptance. I wish my family members could understand this.
While I know in my head that I am dealing with my mother who has dementia, the hurtful words still hurt. Once I finally acknowledged my own true feelings, I began to better handle my reaction to her caustic remarks. Being a nurse who has worked with dementia patients for a long time does not help when the "patient" is one's own mother.
What has worked for me is to shorten the length of my visits. I attempt to keep the conversation to old memories, which is fun for her and interesting for me, our visits go well. When the "bad behavior" starts, I know that it is time for me to say, "I love you," give her a kiss, and leave.
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