What's the best way to handle criticism about the Alzheimer's care I'm giving my mom?
I've been caring for my 74-year-old mother, who suffers from Alzheimer's, for several years now, and some days it's difficult not to become frustrated with her. This has happened a few times when relatives were visiting, and they've given me some grief about not being more understanding with her. How do I deal with this unwarranted criticism?
It's very common for people who aren't the primary caregiver to be critical -- they often have no idea how hard day-to-day care is. So I try to make sure everyone in the family understands what all the tasks involved are. At the same time, I try to help the caregiver identify what the specific criticisms are, what their cause is, and whether there's anything that could change.
One useful idea for both sides is to ask the critical family members to give you some respite, maybe for a couple of days while you go out of town. They should begin to understand the kinds of difficulties you cope with daily.
Be aware, though, that people with early dementia who still have good social skills often rise to the occasion in these situations. They may be able to function very well for limited periods, leading the relief caregiver to underestimate the actual level of impairment. What's more, the effort is usually exhausting for the patient, who may fall apart after company leaves. Two or more relief stints might be needed.
Some discord happens because relatives have differing values. Maybe your siblings want to boost your mom's independence, and you feel she needs more supervision and hands-on care, or vice versa. Family members may have different tolerances for risk as well, and that may inform what they think needs to be done. An honest discussion of each person's perspective -- including the unspoken "shoulds" and "shouldn'ts" we each carry -- can help all of you.When you're at an impasse, or if you find it hard to communicate on your own, consider asking an impartial party to lead a family meeting to talk about these issues in a neutral setting. Many Alzheimer's Association chapters have individuals who are available to lead these meetings, as can social workers, geriatric care managers, ministers, and rabbis.
It is so frustrating to give the best you can and it still not be good enough for the rest of your family. Until they spend some time with the patient, they have not got a clue! My aunts are always telling my dad that he needs to get some help (are they going to help pay for it? NOT!!!), that I need to quit work to help my dad with my mom (are they going to pay MY bills? NOT!!!) I also have an aunt who lives in another state and the aunts are always complaining because Aunt ___'s son and daughter-in-law are "stealing" her money, because she is not as bad off as they say she is, because they will not let her talk with them, etc. They have also accused me of taking MY mom's money although her checking account has hers and my dad's names ONLY. They do understand that my mom is pretty bad off because they do stay with her some but they still don't REALLY have a clue what my dad goes through. Just remember, some people you just won't ever be able to satisfy.
My mother-in-law has Alzheimer's ...my husband and I have strugggled through all of the stages this miserable disease with her for more than three years. This disease wreaks havoc on her sweet soul and ours. With that said, all of our relatives are NEVER critical. They constantly say how "wonderful we are" and "how we have enhanced the quality of my mother-in- laws life. Everyone always says "I wish we could do more", etc.............. I'm tired of hearing it BECAUSE when these people are in her presence they ignore her. People will say "I'm uncomfortable"....HELLO!!!!! " I AM UNCOMFORTABLE .....the "repetition", the "hallucinations", "the incontinence"....the list goes on BUT you do what you need to do because you "LOVE" this person. You read up on the disease (One sibling is a nurse another a social worker, another a physical therapist, another a hospice counselor....these are all intelligent people but when we get together...there is no relief for my husband or I. These professionals refuse to see the signs of this disease. I realize it's hard for them to see their mother in this state but it's hard for me!! All their "thank you's" seem very empty. I'm not saying live my life and do this 24/7 I'm simply saying "be with her in the moment"...engage her....lookm at "photos", dictate a letter, play cards, make up a crossword with family names......BE AWARE....
Take a look at the stages:
3 Stages of Alzheimer’s disease
Description Duration Characteristics
Mild/Early 2-4yrs Frequent recent memory loss, particularly of recent conversations and events. Repeated questions, some problems expressing and understanding language. Writing and using objects become difficult. Depression and apathy can occur. Drastic personality changes may accompany functional decline. Need reminders for daily activities, and difficulties with sequencing impact driving early in this stage.
Moderate/Middle 2-10 yrs Can no longer cover up problems. Pervasive and persistent memory loss impacts life across settings. Rambling speech, unusual reasoning, confusion about current events, time, and place. Potential to become lost in familiar settings, sleep disturbances, and mood or behavioral symptoms accelerate. Nearly 80% of patients exhibit emotional and behavioral problems which are aggravated by stress and change. Slowness, rigidity, tremors, and gait problems impact mobility and coordination. Need structure, reminders, and assistance with activities of daily living. Severe/Late 1-3+ yrs Confused about past and present. Loss of recognition of familiar people and places. Generally incapacitated with severe to total loss of verbal skills. Unable to care for self. Falls possible and immobility likely. Problems with swallowing, incontinence, and illness. Extreme problems with mood, behavioral problems, hallucinations, and delirium. Patients need total support and care, and often die from infections or pneumonia.
Other Models for understanding Alzheimer’s disease symptoms Your doctor may also use a diagnostic framework with five, six, or seven levels. Progression through these stages may last from 8 to 10 years. Although it is rare, some live nearly 20 years from the time neuron change first occurs. The seven stage framework includes the following dimensions: Stage 1 – No impairment. Memory and cognitive abilities appear normal. Stage 2 – Minimal Impairment/Normal Forgetfulness. Memory lapses and changes in thinking are rarely detected by friends, family, or medical personnel. Half of those over 65 begin noticing problems in concentration and word recall. Stage 3 – Early Confusional/Mild Cognitive Impairment. Subtle difficulties impact functions. Try to hide problems. Problems with word retrieval, planning, organization, misplacing objects, and forgetting recent learning affect home and work environments. New learning, complex planning and organization may be impacted. Depression and other mood disturbances can occur. Duration: 2-7 years. Stage 4 – Late Confusional/Mild Alzheimer’s. Problems handling finances result from mathematical challenges. Recent events and conversations are increasingly forgotten. Still know selves and family, but have problems carrying out sequential tasks, including cooking, driving, and home management tasks. Ordering food at restaurants, independent shopping, and other sequential tasks are affected. Often withdraw from social situations, become defensive, and deny problems. Need increasing assistance with the “business” of independent living. Accurate diagnosis of Alzheimer’s disease possible. Lasts roughly 2 years. Stage 5 – Early Dementia/Moderate Alzheimer’s disease- Decline is more severe, and requires assistance. No longer able to manage independently in community. Unable to recall personal history details and contact information. Frequently disoriented to place and or time. A severe decline in numerical abilities and judgment skills leaves patients vulnerable to scams and at risk from safety issues. Even if able to dress, feed, and perform other basic daily living tasks, require supervision. Loss of current information is inconsistent and personal history is no longer reliably recalled. Duration: average of 1.5 years. Stage 6 – Middle Dementia/Moderately Severe Alzheimer’s disease- Total lack of awareness of present events and can’t accurately remember the past. Progressively lose ability to dress and bathe independently. Bowel and bladder incontinence often occur, repetitive verbal or nonverbal behaviors are present, wandering, suspicion, and other dramatic personality changes are common. Can’t remember close family members but know they are familiar. Agitation and hallucinations are particularly present in the late afternoon or evening. Late in this stage, need care and supervision but can respond to nonverbal stimuli, and communicate pleasure and pain behaviorally. Lasts approximately 2.5 years. Stage 7 – Late or Severe Dementia and Failure to Thrive. Severely limited intellectual ability. Communicate through short words, cries, mumbles or moans. When speech is lost, also lose ability to ambulate without help. Health declines considerably as body systems begin to shut down, swallowing is impaired, and the brain is no longer able to interpret sensory input. Generally bedridden, increased sleeping, seizures possible. No longer responds to environmental cues and requires total support around the clock for all functions of daily living and care. Duration is impacted by quality of care and average length is 1-2.5 years. Eating & Swallowing Progression
In the early stages of Alzheimer's, your loved one may simply forget to eat or lose the skills needed to prepare proper meals. You might call your loved one to remind him or her to eat, or prepare food in advance and then talk your loved one through the steps of unwrapping, reheating and serving.
As Alzheimer's progresses, your loved one may forget table manners and eat from others' plates or out of serving bowls. He or she may lose impulse control and judgment and, in turn, eat anything in sight — including items not intended as food. During the later stages of the disease, difficulty swallowing is common. Expect agitation and distraction Agitation, one of the most common symptoms of Alzheimer's, may make it difficult for your loved one to sit still long enough to eat a meal. Distractions at mealtime may make this even worse. To reduce distractions, turn off the television, radio and telephone ringer. You might also clear the table of any unnecessary items and use plates and bowls without patterns.
Try colorful plates and large-handled utensils Your loved one might eat more when his or her food is served on a brightly colored plate. Try bright red or bright blue, rather than pastels. The visual contrast may make it easier for your loved one to distinguish between the plate and the food. To keep plates from slipping, use place mats that have traction on both sides — or make your own from a roll of the rubbery mesh typically used to line shelves. Sometimes bowls are easier to use than are plates. Likewise, spoons may be easier to handle than forks. The larger the spoon's handle, the better. Try bendable straws or lidded cups for liquids. Offer foods one at a time If your loved one is overwhelmed by an entire plateful of food, place just one type of food at a time on the plate. You could also offer several small meals throughout the day, rather than three larger ones. Cut food into bite-sized portions. Finger foods are even easier — but avoid nuts, popcorn and raw carrots, which can be hard to chew and swallow. Sneak in extra nutrition If you're having a hard time getting your loved one to eat enough, you might take advantage of the fact that many people who have Alzheimer's disease are most alert and hungry in the morning. You could serve a filling breakfast, or several light breakfasts in a row. You might also offer high-calorie snacks — such as protein milkshakes. Consult the doctor if your loved one loses weight suddenly
While caring for my husband's mother who had Alzheimer's, his sister who never helped us at all finally came for a visit to give us one evening out in the 4 years we cared for mom. Said sister was always a little condescending, but not openly critical. When she came (with another family member in case there were 'icky' things that had to be done), one evening sent her packing, never to visit again. Things got much worse after that, of course.
Then, during a particularly tough period following mom's second hip fracture and subsequent recovery, a Home Health nurse who wasn't quite up to speed on the current situation offered advice on how to keep up the patient's spirits, orient her in reality and give her fun things to do. After having slept a grand total of 10 hours in the past week, I gave her my best 'evil eye' and, on the verge of tears, quietly said, "Sometimes clean and dry is good enough" and went to bed. No one bothered me for several hours.
Those are just two small tough things that happened, but it points out how alone you can feel when you're doing the right thing for the right reason.
We took good care of her until her brain no longer sent signals to her lungs to breathe. She died quietly in her own bed. It's the best and the worst thing I've ever done. I don't think I can do it again.
No one who hasn't actually done this monumental task can know what it's like and has no basis for criticism. Tell them so and let it go at that.
I learned an extremely helpful answer for those who criticize 30 years ago from a very outspoken paramedic. He said that when he was criticized from a bystander while helping an injured patient, he would say, "You know best," and he would step back waiting for the bystander to take over. Of course, the bystander would look horrified and take off. When your family, friends, bystanders criticize you, look very relieved and say, "I'm so glad you said that! I can so use your help! Please come Tuesday at 9 am to take care of (patient), so that I can get the (work) done!. You are a wonderful person to help me!" That person I guarentee will look horrified and say they can't make it, but keep naming days and times until they have to say yes to something. Believe me they will have learned their lesson, and you will have at least some help for an hour or two. If they are standing right there at the time, show them the supplies, then say, "You know best" (with a smile), and walk out of the room leaving them to do the job. (This worked great for my sister when her coworker kept criticizing her work. He stammered something and ran, never bothering her again).
If they are far away, then tell them, "Does this mean you are coming for a visit? (Do not let them respond) How wonderful! (patient) will be so happy, and Lord knows I need a rest! (do not let them respond) This is an answer to my prayer! When can I expect you?" When they stammer that they can't come, just keep suggesting dates and times that would be best for you. When they call again, ask if they've found a time yet that they could come.
People are full of words but back off when confronted with the work. Be cheerful and hopeful with doe eyes when saying it, and they won't suspect that you are teaching them the lesson of put up or shut up.
I'm the oldest of three kids but feel like the sole, primary caregiver. Somehow not working, caring for my mother (who would otherwise be in a nursing home) seems like a simple task to my two siblings or better yet being called a controller! My sister easily took a vacation without telling me because she really needed a break. My brother was taking mom to the (less important) doctor visits or tests until I found out that he enjoys sitting in the waiting room or leaves for a haircut, never stopping to speak to the doctor involved! Oh yes, I've told him ample times that he must be her advocate in these situations but clearly he is not capable of any serious responsibility.
What's so easy about constantly scheduling appointments, maintaining meds, following-up with the multiple doctors, not to mention grocery shopping, managing all the med bills, paying all the bills, picking-ups meds, washing plenty of soiled laundry, cooking depending on what she might like that day and endless cleaning. Never a thank you or any emotional support from either of them. I feel there's no point in trying to explain any of it. It's so frustrating and if I have a day to myself, then somehow, I should be able to accomplish a million errands in one short day; that's simply an insult to me.
Unfortunate but true, I think this happens in the best and the worst of every family. However, I don't know how to relax anymore. My brain operates on a 24/7 hour schedule and of course planning or thinking of doing anything for myself is highly improbable. What a big deal it is for either sibling to take over for merely a day or so! Dare I cut into their schedule! Talk about doing me such an huge favor!
I am so thankful for this site because our unheard voices fall on deaf ears over and over again. Thanks for being a beacon of sanity.
Thank you all for your comments! They are so helpful. I feel better after reading them. I guess my Mom is in the middle stages now, but I have had criticism from others, mainly accusing ME of 'spending her money'! That seemed to be the only concern anyone has had and no one has a clue what I've been going thru. I've had to 'appease' her wishes and do what she asks up to a point, to keep her happy and to keep her from doing something drastic with her finances, which she has proven she is NOT capable of handling. Yet others were taking advantage of her and I had to step in to take over so her bills would be paid and her bank wouldn't close her account. She accuses me of being 'bossy' and 'controlling' and others have too! Even a nephew who said I was trying to control her because I was not letting her drink as much wine as she wanted. I found her drunk and she had fallen and hit her head on the fire-hydrant! Wine was spilled all over the floor and my nephew thought that was 'fun'!!! I got her to divide her one (lg) bottle weekly into three smaller juice bottles that lasted her two days each. She gradually drank less until now she hardly ever thinks about it and doesn't even drink a bottle in a few months! As long as she has something sweet to eat, she doesn't want it. That same nephew was in jail and called her wanted her to give out her credit card number to a fellow inmate to bail him out of jail! That's the day I took away her credit cards. She was getting her card out to give it to the inmate over the phone! So sad..and I've been accused of 'spending' her money and 'controlling' her ever since! She refuses to bathe, won't let anyone touch her hair but the same hairdresser who has done it for years, and puts off going to her if I let her. She argues and complains about not being able to drive and if she had a car she would take herself! Yet she knows down inside that it was getting hard for her to drive before my nephew got her car confiscated by the police, then taken by the bank for letting him drive it without a license! It gave an excuse though to keep her from driving, but was an expensive lesson! Should not have happened! It goes on.. and even her caretaker, who drives her to her cardiac reahab (excercise) classes 4 days/week (who is a retired LPN) did not know she had dementia when the doctor told me she did. She fools others but I see a lot more and they laugh at things she says she thinks are funny, but I know they are her way of 'repeating' things because that's what's familiar and it gets her attention. Others think I'm being too 'controlling' when I tell them not to buy her so many sweets, and they do it anyway. They don't realize she is not eating the right things and her cholesterol is too high and she has a blocked caratiod artery! She could have a stroke and I'm trying to prevent that. She likes to 'put me down' in front of an audience, its something she's always done, and it's worse than ever. It makes others think I'm not being 'fair' to her and they have no clue that it's her way of getting 'attention' and keeping an 'audience'. In private though, she does tell me she appreciates me for taking such good care of her and I know she means it. I love her so much. I just wish my brother, and stepson, and nephew knew what it was really like. They don't have a clue.. and they don't believe she's 'as bad as I let on'.. to quote my nephew. he's been in jail 3 yrs! How in the world would HE KNOW??? And my brothers 5 states away and never calls her. But she writes him all the time.. the same letter! Today I am drinking coffee, waiting for Pat to come take me to cardiac rehab, I weigh.. 125..lost .5 lbs or stayed the same, or gained .5.. and the curtains are drawn, the animals have been fed, dishwasher ran, etc. I do not think they even realize that's what she says because that is all she can process.. her routines! If that is messed up, she becomes confused and doesn't know what she's supposed to do.
Some people criticize because they care about the patient, and know that some caregivers ARE neglectful and theiving at worst, or untrained at best. It is not wrong to be aware of what is happening to in a patient's life. That said, our worst critic was the patient herself, queen mother-in-law, who is in her right mind. She has 4 grown children, 5 grown grandchildren and 2 grown great -grandchildren, but they all took a giant step backwards when she started having mini-strokes with NO loss of function, and NO permanent damage. Everyone but my husband & I, and after 3 1/2 years we begged her to let someone else move in and take over for us, and she said (get this) "But they all have lives." SHE was the only reason WE didn't! Anywhoooo, this has been going on for centuries, and unless people choose to be decent, we caregivers are on our own.
Then there is the "you are female, so you don't have a "real" job" routine. My Grandmother was forever treating my aunt as if she was avail at her beck & call and her time was of no value, but would never call my uncle because he "worked". BOTH of them have worked their entire adult lives & are very sucessful. My Grandmother was was shocked last year when I told her that my aunt actually makes more per year than my uncle (she is a highly skilled accountant). I think that bit of knowledge actually helped get her to treat my aunt with (a bit) more respect.
I have so often been told how to take care of my mother, how awful I am because I have put her in a nursing home, how I am "stealing" everything she has. It is very frustrating, even the neighbors got involved (one of whom was a daughter of a neighbor who lived about 1000 miles away, lots of help she would be). Honestly I have cried a bucket of tears over the decision I had to make, but I know in my heart, it is the best decision, Mom is safe there, she won't wander off in the middle of the night while I am asleep, and I know that she is eating. Three very important things to me. My husband and I lived with her and took care of her for 11 years until it was no longer possible. My stock answer to anyone who asks now is I am doing the best that I can do, if you think that you can handle the situation better , then please by all means feel free to take her to your home. Guess what the answer always is, you guessed it, OH I couldn't do that I am not equipped to take care of her. Well guess what neither am I and keep her safe. With lots of prayer and understanding from my husband, my children and my brother I have made peace with what I had to do. Mama knows I love her and she is safe, warm and well fed. Most importantly God knows my heart and in the end her care and that fact is all that matters. Sometimes you just have to put people on the spot and say if you can do better, please feel free to do so.
Let's all support scientific research that aims to eliminate this hideous disease!
Although difficult, ignore criticisms. Self-reflect and try to improve where you know you can in your care-giving. When things get tough, try to imagine yourself afflicted with a disease so horrible that no one wants to talk to you or be in your presence. Where people talk about and around you like you can't hear; and laugh at you while you're trying to make sense of your current reality. Where you have no control over what's happening to you, and no way to defend yourself. What a humiliating way to die! Oh and don't worry, this horrific disease will relentlessly decompose your abilities until you're at the mercy of others like a small child. Knowing these facts and witnessing this got me through a decade of caring for my parent with Alzheimer's; and has made me a more compassionate person. Our lives are so short. In the end, as in the beginning, caring for each other is all there really is. My care-giving days have ended. Yet believe it or not, I wouldn't mind looking after my parent again if I could only see their smile once more. If you had the ability to see what happens in the end and work backwards, you would become stronger and more benevolent. Look for ways to make the victim of this disease more comfortable. Talk to them like they can understand; as I know they have better receptive than expressive language. Look for ways to make their life more healthy and beautiful. Tell your critics that your loved one is well cared for by YOUR efforts; and that love is an action, not words. When they would like to contribute their actions to help, then you will listen more seriously. Keep your strength and composure. Rest well knowing that you are making a positive difference in someone's life while nearing its end. When it's over, that knowledge will give you peace.
All caregivers don't handle things the same way. And, some caregivers are in denial about issues that they have had with a parent (with dementia, now) their entire lives. Some people continue to act out as an angry child would with a parent they insist must change. And that parent is no longer capable of healing those old wounds. It's a no-win situation for everyone.
Everyone makes mistakes, and, yes, it is easy to get frustrated. However, some behaviors are just not helpful. If someone criticizes, check yourself. Do they have a point? If not, just thank them for thinking of your family member, and let it go. If they do have a point, check yourself--do you need a break? More help? Counseling?
Some interactions are not helpful. For example: - Lecturing your family member with dementia, and telling them "you can do better." - Commenting on what your family member can do and then telling them they “should be able" to do other things. For example, telling your family member that "you can dress yourself and feed yourself, you should be able to remember to take your pills" is NOT constructive. Dementia patients lose the most recent capabilities first (i.e, using the computer, electronics) and keep the oldest capabilities longest. If someone has been dressing themselves since they were 3 years old, remembering how to do that may stick around longer than taking pills that have only been part of a person's experience for a couple of years.
-- Telling the family member that they are "doing it wrong" "should be doing (whatever), are "manipulating" or any other language that is abusive or makes them cry--is not useful. However, asking nicely sometimes works, such as “please don’t wave your hand in front of me when I am driving, it’s distracting.”
This is not meant as a wholesale condemnation of care givers. I AM a caregiver, and I can tell you that my family member is happy when I am there, because I really try meet them where they are, not where anyone else expects them to be. I try to validate and comfort them, saying “it’s okay, let’s try again,” or “let me help you.” Lecturing and telling a person that they are not doing things correctly (such as saying "I already told you that! You are not paying attention!") is not only unhelpful, it can veer over into emotional abuse.
If you are a caregiver and cannot help but respond in a way that is frustrated, please seriously think about whether or not you are burned out, or if you should get more help for your family member, and more rest and/or counseling for yourself.
Having my family member call me, crying, because one more time "she did something wrong" (according to another family member) is just heartbreaking to me. I can't believe some people can be so hurtful, but they can.
It is not in any way easy to watch someone you love deteriorate, but helping them to feel okay about themselves while this is happening is the greatest gift I can give. Saying "it's okay, I understand, and I am sorry you are going through this" helps so much. My family member has told me many times "thank you for helping me feel better" when I say "it's not your fault, your brain has a "short" in it. Don't worry about it."
And elder abuse happens, especially with dementia patients. If you think that's happening, speak up! Call someone. Talk to the doctor. Don't just let it slide.
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