Dealing With Criticism of Your Caregiving for Someone With Dementia

24 answers | Last updated: Nov 14, 2016
A fellow caregiver asked...

How should I deal with family members who criticize my caregiving of my parent with dementia?


Expert Answers

Paula Spencer Scott, contributing editor, is the author of Surviving Alzheimer's. A Met Life Foundation Journalists in Aging fellow, she writes extensively about health and caregiving; four of her family members have had dementia.

As hard as it is, try not to take harsh comments personally. Try these more constructive approaches:

Don't assume they "get it." Many family members don't realize how challenging and demanding it can be to look after someone who has dementia. They may only see the person at "good" times -- on short visits, say, or during family gatherings when the person seems happy or subdued. They may be making off-the-cuff comments that aren't rooted in reality.

Stay calm. It doesn't help anyone if resentment takes over or escalates into a fight. And the person with dementia is apt to pick up on tension, possibly worsening how he feels or behaves.

Ask how the critic would handle a situation differently. She may have an idea that works, or she may realize it's easier to complain about something than to fix it.

Listen with an open mind. A criticism may contain a nugget of constructive truth that you can benefit from. So try to hear past the emotional content and neutrally evaluate the facts behind the comment.

Invite critics to try hands-on care. Don't make it sound like you're issuing a challenge. Just explain that you need to get away, whether it's for a full day or an overnight trip, and ask them to stand in for you. This can be an eye-opening experience for someone who doesn't appreciate the multiple small challenges involved.

Don't beat yourself up. If you feel confident you're doing the best that you can by your loved one, that's what counts -- not what anybody else thinks.
 


Community Answers

A fellow caregiver answered...

in my life everyone has something bad to say about the person my husband it is true he was never perfect but i am doing what i think is right and i feel so alone


A fellow caregiver answered...

It is true, as the primary caregiver to both parents, it can feel lonely. We all look at things in a different way. We have sibling meetings every few months to discuss the problems/situations that have recently come up, as out parent's needs change as time passes. I have found after several meetings that each can help by using their own unique abilities. Out of the past 3 yrs of care, I have finally resolved that it is ok if things are not done my way to the letter. In the past, I would be crying (literally) to my husband, because I felt the same as you, because my family would do the same. I made them a part of the solution, giving them responsibility and alleviating the negativity. I will keep you in my prayers.


A fellow caregiver answered...

I have had to learn the hard way .People that are on the outside looking in are trying to help but it is the caretaker living it .It is good to take the coments and try new things but in the long haul we do what we can. The comments of others here offer good advice but in the end of the day we need to do what we know works and try to take care of ourselves too.I did look into homecare and at this time it does not work. I looked into daycare and that did not work at this time either. I even looked at placing my husband in assisted living.All listening to people watching me struggle.Now I know I have options doun the road.But my husband is not easy and I to have to feel about good things.Thank God the step kids dont care or I would have more promblems because my values are different.Who said all is easy and everything needs to feel good .


Gropinginthedark answered...

Question: Should the alzheimer family member be included in the periodic "sibling meetings"?


Emily m. answered...

Hi gropinginthedark, Thank you very much for your question! If you'd like to post your own question, you can do so here: https://www.caring.com/ask. I hope that helps. Take care -- Emily | Community Manager


Hollyw answered...

Boy, I could write a book on side line coaching!!! I have been sole caregiver of my mom with Alzheimers for 8 years now, my sisters rarely ever help, but they sure are quick to give their opinions and make rash judgement calls when they hardly spend any time with mom. I used to get extremely defensive, but now I realize they are coming from a place of guilt and ignorance. Yes, it is hard to listen to their "great" suggestions - I simply nod and thank them - knowing most the time I have already solved the problem or tried their suggestion! Now my niece has graduated college and she thinks she is an expert - its actually funny since she has spent a total of 4 hours with mom in a year! And at different times. Taking care of mom would be so much easier if my sisters and their children were more supportive. If they would ask ME how I need help - call ME see how I'm doing - but what keeps me going is knowing in my heart that mom is happy, safe and loved, and I'm always conferring with other caregivers and doctors,and doing the best I can for mom!!! Hang tough, my dear, your an angel!


Hedwig answered...

The opposite situation can also exist, where the person who is physically nearest is actually most in denial about the person with dementia's abilities and risks. Two of us siblings who live out of state and traveled twice a year to stay in the house with our father had more realistic and proactive approaches (backed up by a geriatric nurse) than the one living near him, who chose to pretend that things were mostly fine, and put him at serious risk of medicine problems. Sometimes those with fewer contacts see more clearly the decline. Sometimes someone who lives nearby, and has a stake in continuing to see the ill person as an authority figure and sugar daddy, is least likely to be appropriately proactive. Sometimes that person ends up kicking the realists out of the picture and taking control over the ill person, for reasons of greed...


Suseli answered...

After caring for my father with Alzheimer's for the past two+ year s, I have decided that there is no way anyone can understand what it is like unless he/she has done it. It is exhausting in every sense of the word. I do the best I can taking it one day at a time and make the best decision I can at the time. My siblings think I have it "made" because I have "free" room and board. Yeah, right. They may criticize the decisions I have made, but they give zero support or assistance so I have decided that they have no room to criticize until they step up to the plate. Good luck to you.


A fellow caregiver answered...

I think I am in the same situation as Hedwig, seeing my mom's decline a bit more clearly than my sister the care giver. In my case as I read your emails and articles, I forward the ones that are relavant to her to read. This has been helpful in getting her to realize that Mom is declining, and needs help. Fortunately our situation is not about greed, but about not wanting to make hard decisions for Mom's care. We are starting to work on those decisions finally. The articles have been great!


Hollyw answered...

In response to Hedwigs answer - that can be very true in many situations,but for those of us who see the slippage on a day to day basis,we deal with it and make adjustments and move forward. Those who only see the alzheimers/dementia person every so often, in my case at least, tend to overreact and jump to conclusions. I relie on my support system and moms doctors to help me step back and do whats best for mom. I have taken her to doctors many times when I didn't need to, but it re-assures me that she is alright. It is also important to remember there are good days and certainly bad days. I do not take any concern lightly however, after 8 years I certainly have developed as a caregiver and try my best to evaluate each new problem with a clear outlook. I have been accused of perhaps being too "close" to the situation, from a sister who has all the right intentions . I am thankful for her opinion and try to remain balanced in how I look at moms care.


Caterinamaria answered...

It does not matter that there is one child or 9 (as in my DH's case); it seems to always come down to one child who takes responsibility in the care of a parent. Yes, true inability, guilt, selfishness, ignorance (sometimes by choice) lack of compassion/nurturing skills and/or sheer fear ALL contribute to their not participating in the care of their parents or loved ones. Why is it that the ones who do the least are the ones are the most critical and so full of suggestions (usually so simplistic and common for the stages that you are beyond). Instead of suggestions--just give us an afternoon or weekend off. I don't think that I am the only one who CAN care (24/7) for my MIL these 4+ years BUT I am the ONLY one who IS taking care of her. If you can do a better job then PLEASE do so. If you are in a situation where others are involved or offer then dooooo take advantage of it. Unfortunately, my husband's siblings have to be forced/guilted to give us 2 weeks off a year these last 2 years. Two years ago when he had cancer and we had to go out of state for treatments he had to guilt them into caring for her 10 weeks. These last two years, one daughter does a week when she can take her to a family get together on the W coast to show the distant family she is such a good daughter (she only sees her 2 X a year and she lives 20 min. away). My MIL returns totally bewildered and her condition declined due to the stress and anxiety. I too rely on the wonderful DR.s and nurses that have educated and supported me through these years. We all begin with a sense of love and commitment with or without experience--we all grow in knowledge with experience as we live with the daily care. This year when I expressed a need for a regular break, I was told that since their brother (my DH) works full time we should be able to afford it. Caring for my MIL has meant that I can not work and now they expect us to pay for me to have a break. They are more concerned about whether they will inherit anything then what our years of care would have cost the estate. This site has been my saving grace because I find so much knowledge from the experiences of others and so much comfort from all of your stories and being able to vent. Keep reinventing the wheel. God's love to all of you who care for another and the ones you love.


Galowa answered...

Greetings All,

In this very busy world, as we all lead our ever-so-busy lives, most of us cope with high levels of tension on a day to day basis. Living on this "edge," for most of us there is no extra room for the demands of an exceptional circumstance such as caring for a loved one - particularly one afflicted with a disease as overwhelming as Alzheimer's.

When exceptional circumstances DO occur, everyone expects SOMEONE to step up, take responsibility and manage things. And everyone is relieved when that someONE is someone ELSE.

EXCEPT...

It's great to let another person HANDLE things, but it's not so great to relinquish CONTROL. EVERYone wants CONTROL - just without RESPONSIBILITY.

If CONTROL is not an option, the "next best" options are INFLUENCE and INFORMATION.

When my father died unexpectedly, leaving my Alzheimeric mother in my care, this was EXACTLY what happened - IMMEDIATELY.

As the designated SOMEone "handling things", I was both RELIED UPON and MISTRUSTED by EVERYone. Extended family called, stopped by, and emailed, but NEVER to help"¦ They only needed to know WHAT I WAS DOING - and HOW and why

They "needed" to be "in the loop."

My mother's "family" DEMANDED to know "everything" but OFFERED NOTHING! On top of my overwhelming new responsibilities, providing them with "information" was exhausting and frustrating beyond belief. My mother's attorney and doctor even recommended I hire with a social worker to monitor both my mother's progress - and my coping status as caregiver.

Then I got an idea! I'd have the social worker send out a bi-weekly notice - email or regular mail - detailing my mother's status and any change in status. ( I wrote the notices myself and emailed them to the social worker. All the updates that went out from one week to the next were nearly identical"¦!)

If anyone called for "info" I told them I'd add them to the mailing list. If anyone called with criticism or suggestions I referred them to the social worker. Needless to say, the calls got shorter very quickly. There was suddenly nothing to say. Then they became fewer, too. And guess what? Not ONE single person ever followed up and called the social worker"¦

And I quickly learned that all the offers of "call us if you ever need anything" meant - literally - NOTHING. I was on my own, unless I BOUGHT HELP!

In no time at all the only remaining "problem" was my sister - an angry, mentally ill woman who is unreasonable and ugly to deal with. My sister attacked me, and my care of our mother, in every interaction we had. So"¦

I decided to take care of my SELF.

I called my mother's attorney, and I let HER handle this thorn in my shoe. And one day, I suddenly noticed that the attorney had successfully put out the she-dragon's fire!

FINALLY, I was FREE!

In fact, I was now free to such an extent that the ONLY real issue I had remaining was providing the actual CARE for my mother - 24 hours a day, 7 days a week, 52 weeks a year - and now nearing the end of the sixth year. And THAT is issue ENOUGH!

l know this won't solve everyone's problems, but if it only serves as a starting point for one person to silence their USELESS THRONGS it will have been worth the sharing. The bottom line is that the experts really do NOT understand... WE SHOULD NOT HAVE TO BE THE ONES "being creative" and "sensitive" and cutting slack for family members who DON'T UNDERSTAND.

WE... ALREADY DO-
MORE THAN ENOUGH,
and
MORE THAN "OUR SHARE."

I have neither the time nor the energy to be "nice" to those who are:
RUDE,
INSENSITIVE,
and USELESS.

And - NOT ONE CAREGIVER AMONG US DOES.

As ever,

Galowa

©suzannemcable.05.01.2011


Hollyw answered...

I find this site very helpful as well, and the responses to all the questions. I also need to vent sometimes - I just got an email from my sister who has just backed out on keeping mom for me one lousy evening!! Now I have to make alternate plans!! We had this all set and she just says she can't do it now. I am so angry, it seems I cannot count on her at all. Thats exactly why I hardly ever ask - I guess I should know by now not to expect much help from her. I don't understand why its so easy for her to not fulfill her commitments, especially when its her own mother!! I need to go calm down, but she will get a phone call this evening!!


Gropinginthedark answered...

GALOWA, you not only seem to share this problem, but have come up with a couple of very specific, clever ways to get out from under it! Thank you for sharing! Your wisdom / experience will be a blessing!

I also sent contact information to my sibs. . .so they can call the doctors directly, when they have questions about meds / changes / advice i am trying to follow.

I've been the "out of state" sibling before moving here. It is hard to live far away and not be able to help, but here's the challenge to any of you who are :

1)No matter how wise, educated, well intended you may be, FIRST, in order to be TRUELY HELPFUL, be kind and considerate (AND COURTEOUS !) to your proxy caregiver.

2) Offer TIME, before you offer advice.

3) Call to LISTEN, not just to "inform".

4) I firmly believe the better care you give your proxy caregiver, the better care your family member will get, because the good will and patience and kindness and courtesy you DEMONSTRATE to your proxy caregiver will be magnified through your relative-on-the-ground to your afflicted loved one----EVERYBODY WINS!


Caterinamaria answered...

I had commented two weeks ago that we were finally getting a week off from my MIL's care giving (stage 6 Alzheimer). When we have gotten a break these last two years, we have not been able to get away but this time we had 3 wonderful days. When my MIL returned to us she had dramatically declined physically and mentally. While at her daughter's she was visited by her nurse and physical therapist who noticed the decline. Three days after she returned to us, she had a TIA (mini stroke) and I rushed her to the emergency room. Apparently she had had a TIA while she was with her daughter resulting in the decline we noticed when she returned to us--the daughter did not notice. I have spent the last 2 1/2 days in the hospital with her alone since my DH was out of state and got here as fast as he could this afternoon. My DH and I have been in constant contact with the other 8 siblings to give them updates. Not a one of them offered to come or help. The daughter who took her the week before is out of state but the other daughter is closest (5 hours) and she made no effort to come. I am just livid..... After all the critisim I have had in the near 5 years of caring for their mom not one of them asked, "What can I do? or Should I come?". Even before my MIL came to live with us we asked her to do so the year before when she was diagnosed with Alzheimer. I was accused of "Making decisions for our mother" when I suggested that with the progression of the diesase she would need a nursing home within a 12-18 months unless she came to live with us. As I sat there in the hospital I thought about how they were ready to let me "make decisions" alone in the hospital as I do daily with her care but WHERE WERE THEY?. I know that I am being petty and feeling sorry for myself. As I sat ther with her it brought back memeories of previous long hospital stays with each of my parents as they dealt with cancer and death. Those memories bring back all those emotions of love, fear and the lonely hours we all feel when we care for a loved one in a crisis. Yes, all of them thanked me for not leaving her bedside and careing for her BUT at this point in time after nearly 5 years "A Thank you now are just words--too little and too late" I take no comfort in knowing that they have had to "eat their words" of critisim in the past. My DH is with his mom tonight after she was moved to a trained nursing facility for 7-10 days of physical therapy. From there she may come home or a nursing home. I'v told the sibs that if she does come home that I will need help and that the money for it will have to come from their mom's estate. They were so surprised to learn that here it will cost $15-29. an hour with a 4 hour committment 3 times a week. If they thought that was expensive then they should think about the nearly 5 years of unpaid care that I have already given. Sorry I am tired. Hopefully tomorrow I won't feel so sorry for myself.


Hollyw answered...

Dear CaterinaMaria - your last response has left me feeling not so alone and I only hope you realize my husband and I are in a similiar situation. I wish I could hug you and tell you I understand totally! As my mothers condition progresses, and I deal and cope the best I can, my sisters are increasingly distant and uncaring. My mom also has 5 grandchildren nearby who do nothing to help her or me - don't even visit. It makes me so sad then incredibly angry. As I wrote the other day, my sister just backed out of a commitment to have mom one evening. ONE EVENING!! I often think the guilt will tear them up, but that is of little consulation when I am taking care of mom 24/7. I am thinking of you and all you do - please know you are not alone!!! You are special and you make the world a better place!!!


Wowmomma answered...

I have one sister who dislikes me for being the baby of the family. She does not want my mother in my home. She thinks my mother should go to a nursing home "while she can still enjoy it"! She does not think I should get any money for caring for my mother, but it is fine to pay a nursing home $2,500 a month. My other siblings really don't care one way or the other. My sister is 63 years old and I wish she could drop her hatred! My mother has been in my home for 8 months and she has improved in many ways!


Jean's daughter answered...

Whip out your calendar and ask when you can pencil them in? Be specific and vocal. Be upfront in your need for help and company when you take your loved one to the doctor's, grocery shopping, clothes shopping and more. If they do not stop judging you, inform them that you are unable to further are for your loved one and will need them to take over on date X. We are all doing the very best that we can in our own situations. Ironically, I find that the people who judge the most are from our church and family! They look at you as if to say," Do something about this decline! It makes us uncomfortable." Well, hey folks, it makes me uncomfortable too but I deal with this heartbreaking disease every day. I see my formerly super capable mom confused about my husband and kids and yet trying to maintain her dignity. I deal with it when her cardiologist tells me how sad it is to see her like tis when he knew her when she was such a wonderful hospital admin employee. Yes, doctor, let's rub it in a little more! Thank you fellow caregivers for letting me vent. I know you"get it". In closing, sign them up for an afternoon and then LEAVE. The they too will get it. Blessings.


A fellow caregiver answered...

I feel so much sympathy for those who have written about their struggles and lack of support from other family members when caring for the elderly. It is sad and scary how often the work falls to one individual or couple -- work which is unpaid, unending, and in many cases seemingly unappreciated by others. The bitter unintended consequence of longer life spans is the fact that those last years are often a time of decline, incapacity, and the potential to be a financial and emotional burden to those we love most. I can't imagine what it must be like when parent and child have not been close or loving, or when the relationship is difficult. My mother is so sweet and caring and thoughtful, but she is 90 and frail, suffering now from a dementia. She is tired and depends more and more on others for her most basic care needs. It troubles her to be so needy, and she is grateful for the help she receives. I think to myself that I would rather die at an earlier age from some short illness than to linger on for years and years in an increasingly helpless state, afflicted with dementia, and being a burden to my dear children. A longer lifespan is just not worth it! I do my best to stay healthy, but maybe I'm putting myself at risk for such a decline because my body just won't die even though my mental capacity is gone and I'm helpless as a newborn baby. Not a pleasant future to contemplate. My heart goes out to all who are caregivers. It seems to be a thankless task for many of you.


Hollyw answered...

I often ponder on how I will age as well - watching mom struggle is eye opening - I am 48 and an avid runner - my goals being quite different since I became sole caregiver. Staying as fit physically and mentally as possible . For me, the running is the easy part - the mental stress is what gets me. Day by day is all you can do!


A fellow caregiver answered...

I am the eldest of two children and do most of the 'caring' for my mother. My brother seldom sees her but is always full of criticism for the way I do things. His frequent criticism is that my mother can't think for herself anymore because I do as much as I can for her and have taken away her independence. I often feel like telling him to get on with it since I am getting (in his opinion) it so wrong but because he can only mange a few minutes at a time, my mother would be the one who would suffer as a result. Instead I get upset and angry with him and this is making me feel so lonely and isolated as well as depressed. It is also hurtful when my mother responds as if the 'prodigal son' has returned whenever he honours her with one of his very infrequent and short visits. I feel like the invisible one that is taken for granted. Has anyone got any advice for me?


Gowithflo answered...

as i read how family isnt there to help out -im feeling blessed that i dont have that problem not that i dont have siblings that could help with our sister 72 with modern Alzheimer but their live out of state and dont even call -the one that live an hour away has bad medical problems herself but she could at lease call -one sister our youngest would quit her job and leave her grown kids and g-kids if i asked her to come help -she tells me every other time she calls "sis if you need me let me know " but i wont do that again -she did it once when i was caring for our brother 10 yrs ago because he was mentally challenged and got throat cancer that spread to his tongue and had to have it removed -he was on all kinds of machines, trak,stomach feeding tube and couldnt read or write -had to have some one with him while i worked -any way the only one that gives me a hard time is my daughter but i realize it is because she is worried about me so i just say i know honey and let it flow off my back--my ex husand calls me more the family does -but that is ok i rather do it my self then have the stress and drama -bless all of you caregivers your reward is knowing you were not only there but your love one was loved to the end ----


Centered answered...

Just want to share a quote from an Alzheimer's newsletter, it keeps me focused. Caregiving is viewed as a state of crisis versus a natural state of being. Often, we speak of caregiving as an unusual or different role in life, when in reality, we all need to be mindful and proactive in our relationships with co-workers, family, friends, and associates. It's not some other, separate role that some must do, and the rest of us don't have to. We are all in relationship to one another, and we need to find ways to give and receive in our relationships, which makes them better.