Family members minimizing dementia concerns. How do I get over their lack of concern?

The burden is really yours, not theirs, so they're not overly interested in learning everything that's going on with your loved one. Plus, it seems to me that people turn the other way when 'dementia' is mentioned, and never want to see it 'up close and personal' because it's disturbing to do so. To see a once vibrant and healthy individual now reduced to a fraction of their former self. It's hard for US to deal with, so for those who don't see them often, it can be even more difficult. Plus, I believe others don't want to see what may eventually happen to THEM. If they minimize your LOs condition, then 'maybe it's not really THAT bad' after all. That's my personal take on the matter, after having dealt with my mother who had dementia for 6 years and seeing that nobody came around to visit her. Some relatives (nieces) called her, but wound up creating more chaos than they cured with those phone calls, wondering why she was in Memory Care and telling her she should 'come live with them'. Yeah, right. Uh huh. Talk is cheap.

But anyway, if you are bearing a heavy burden, why not hire help to come into your home to relieve you? Help your LO with showers and meal prep, and other things so you can have a break. You can never depend on anyone but yourself to do the heavy lifting when it comes to caregiving, but you can depend on paid caregivers to help you. Or look into Memory Care if possible for down the road if/when the caregiving becomes too much for you to deal with.

Best of luck!

My experience has been that the caregiver is in such a stuck, burned out condition that they cannot receive help, refuse help, and even sabotage offers of help in fear of losing control, or being judged.

Some caregivers are so used to helping everyone else, they also are looking out for the other person's needs, not wanting to burden others. Not family, not the doctor or nurse, not an additional caregiver.

Call up someone, maybe a family member, and ask them to just come over, spend the night, put them up on a sleeping bag on the floor if you have to.

What is the first "excuse" that came across your mind as to why they cannot or will not come over?

You say you know they will never come over?

Maybe ask again later....

Although I saw my Mom every day and thought she had bad dementia, to my surprise, when diagnosed, it was called MCI, Mild Cognitive Impairment. One year later, yes, her dementia was mild compared to now.

So ask yourself, what would you like from these people? Do you want offers of help? If so, directly ask them. Make the requests specific. Do you want someone to empathize with your situation? You are probably better off getting a therapist or joining a forum like this for sympathy and empathy.

Don't get mad at them for not understanding. Don't get upset at their ignorance. It is a heavy burden on you. If it is really getting to you, you might need professional help to guide you in your journey and help you make plans for the future.

Good luck to you. (Ask for help and be specific in your request)

When it gets to the burnout point, it is time to get help with caregiving. Professional help may be necessary to guide coaching for coping skills.

My mother can carry on a 1 to 5 minute conversation and you would swear she did not have dementia. Then she repeats herself, asks the same questions, makes rude statements, and denies that she eats, etc etc. You could get her doctor to write a diagnosis of dementia, which could be useful for the family and also for any authorities if you have problems. For example, my mother wanted to call the police at one point because of some trivial problem, and our official letter from the doctor would have helped us prove to the police that she had dementia.

Is anyone POA for whatever family member this is?
YOU can not change anyone's perspective on this matter. Until they see for themselves what is going on day to day "they" won't get it.
You could back off. Take a week or so and go someplace on a "vacation" and let someone else step into your shoes.
What are you doing that others are supposed to help with?
If you need help and family will not or can not help then you hire caregivers to help out. YOU do not pay for them the person that needs the help pays for them.
You do not give any information so it is difficult to answer. without knowing if you are dealing with 1 person, 2 people, parent. if parent is single, is spouse involved?????
A bit more information will help get better more detailed responses.

Sandy has described her plight in previous posts. Another sibling has POA and won't authorize any help.

As long as Sandy continues to live with her father to be his 24/7/caregiving slave, nothing is going to change. She doesn't seem to want to make any changes, though, and thinks it is others who have to change.

Warning: imagined statement from the other side;

Dear Caregiver, I can't see or hear a problem, therefore there isn't any problem, therefore I don't need to help, or do anything at all.
Signed: The Non-Help
PS Deal with it

From the Caregiver;

How dare they not help?
Why can't they see?
What's wrong with them?
Where is their heart?
Their sense of responsibility?

I've been in it but it's clearer to view from the sidelines.

The plan must work for ALL.
The one caregiving must have the authority to do so.

First of all, denial affects the entire family. Secondly, denial is enhanced by the fact that as long as there is denial, the is no need to participate in caring for the demented person. This is a very common situation in many families.

No one likes to admit the decline of a loved one. For those dealing with it on a daily basis they have to come to terms with it rapidly to maintain sanity. Other family members have the Luxury to choose to remember the happy times together because the do not have to deal with the daily reality.

I have a sibling who was minimizing my mom's dementia, even during overnight visits. He had the least involvement, and when he was there, she would be doing things for him! Either he was in denial or was convinced I was exaggerating. That's the stance people who don't care-give on an ongoing basis take. The elderly know how to have conversations, be witty and sociable and rally to do small tasks, even with their cognitive limitations. They want to feel valued and independent to those around them. So unfortunately, family members are fooled or believe what they want to believe. Unfortunately this is a road many of us caregivers have taken and one you travel alone. It truly is a lonely, heavy load. The only way to get relief is to hire someone for as much time as the budget allows. You earned that right; please do it before you burn out!

The strongest message we get from Forum is basically that you cannot change others. They have chosen not to be involved in caregiving to the older generation. I would say that for those close in the family circle, children and grandchildren, you can ask for a meeting in which the elder is not present. You can explain that you are the caregiver for whomever, and that you recognize that this was your choice, but that you cannot continue to this extent alone. You can ask if any are willing to participate directly in care somewhat more than they are at present. Tell them this isn't their obligation, but before you make decisions about entry into LTC you need to know if any other options exist. Help with respite, help with groceries or cooking. Help getting to appointments, help with outings. Whatever you need.
If you meet reluctance of any kind you will understand that yes, you are alone in quite the same way you would be if you were the only living relation.
I think then it is time for you to consider your OWN decisions going forward. I surely do wish you luck. But I think you should pursue this with low expectations. They are not blind and they are not mentally deficient. Were they willing they would already be offering is my fear. I hope you'll update us.

How do you get over caring that others do not get it?
How can they get it?
How much help and understanding have I given to people before my own experience?

Unless a person is trained for this, maybe in some kind of charitable agency or ministry, or have endured the same experiences can they understand, commiserate, and speak the same language. No one is clairvoyant.

Your issue is not with others. They seem tunnel visioned, self-protecting and so purposefully unaware. So was I when I first started down this path. I did not understand their position. And then I expected too much. People don’t have a clue.

Maybe your expectations that are too high. People are not mind-readers. People have their own problems, responsibilities, and bugaboos.

Be observant. This is a great learning opportunity that goes far beyond our little corner of dementia related experiences. You are evolving, kicking and screaming, into hopefully becoming someone with a vantage point unlike many people.

I may be wrong but my journey as a forced and lone caregiver re-enforced my ability to accept and understand human nature, and I know enough that it may be limited to my environment. Maybe the environment that I had a hand in creating.  

At any rate, and again I may be wrong, as an aside, I learned that no matter how much and how nobly we work on becoming a harmonious society, for now, it is still a primitive and primal thing to seek cohesion with like people. There is comfort and a feeling of safety with like minded people. People are reassured, get strength and are buoyed by other like-spirited, like-interest, like-culture people. Healthy people like to keep company with healthy people. Sky divers like to hangout with skydivers, knitters like to hang out with knitters, farmers with farmers, and so on. Not very many people will seek to keep company with a sinking ship. 

Decades of intimate knowledge of say family and friends that share life’s moments and milestones does not always guarantee a through-thick-and-thin support system. It certainly does happen and when it does it’s heartwarming. But for some of us when the stuff hits the fan the last man standing is, except for a couple of pats, maybe alone to the end.

People are afraid of what they don’t understand, have not experienced, think will make them sick, think will costs far more in their imagination than they are willing to spend to include time, effort, emotional investment, or money.

Some of the people in my support group have joined churches that have come through 100% more than family. Beside my husband I help the handicapped mother, of a now deceased friend, who is still caring for her middle-aged autistic son. We are pretty close to being in the same boat. In a restaurant we are not bothered if her son shovels food into his mouth in almost a split second or if people see me cut my husband’s food into manageable pieces. 

You have to find your new collective. You don’t have to let go of any others you’d like to be apart of but perhaps you need to recalibrate your gauge for the measuring the depth’s of each.

Well hush my mouth. I’ve done it again. Thank you folks. Not too many people to speak to. I greatly appreciate it.

You probably can't.

My sibs are 100% unconcerend with mom's slide into dementia. She can hold it together for about 15 minutes and then she's done.

Actually, there's nothing that can be done, and nothing we can do FOR her. Just not have expectations that she wants to actually leave her apartment and have a social life of any kind.

I've offered literally HUNDREDS of times to help out with her care and have been shot down repeatedly. YB doesn't WANT any help. Period. He doesn't really even want anyone to visit mom, as she does tell us that YB is mean and controlling. Which he is, but there's nothing to DO about it.

I recognize the dementia (she 92, for crying out loud!) and I don't expect her to suddenly 'get better'.

I have my opinion about what's going on with her and I keep it to myself. My sibs are content with a visit every other month and that's kind of what I have started to do. She doesn't have any memory of past visits or things that were done for her...it's sad, but it is what it is.

You can't and never will because it's safer to live in lala land where he is just fine. I couldn't convince my mom or sister. I had to demand we take my dad to the hospital. He was having a diabetic event/uti. I had to threaten to call an ambulance. So she drove us there. Hospital kept him over a month.
My dad stopped speaking in nursing home. Sibling told me she had long talks with him. Like he only didn't talk to me. Sure, he only had dementia for me and no one else.
You will never get them to come around because they don't have to. And they don't have to help if everything is fine.
Since he is so ok have them come and take care of him. I bet they won't, can't and are suddenly busy.
I hope you are not doing the caring and do not have poa.
They aren't going to help. I couldn't get my sibling to help. In the end she never visited.
You are going to have to set up your own respite care and help. Good luck.

How about requesting a family group meeting with a Geriatric Psychiatrist and/or Adult Protective Services Counselor for placement information?

Perhaps one or both can advise on who should be considered for Power of Attorney and other representative responsibilities?

In your previous posts, you indicated that you don't have DPoA so unfortunately you can't make decisions re: hiring additional in home aides or placement in a facility which sounds like it is needed now.
In 78 years I have found that you usually can't change people and you can rarely have them step up to the plate if you are already there. As long as you are doing what they are doing.... there is no incentive or reason for them to change.

If you can bring yourself to step back, it will force some sort of action on the part of the DPoA, either placement or hiring aides. Failure of the DPoA to act in that instance should be reported to the local Adult Protective Service agency as there would be an elderly person in danger and a DPoA not performing their agreed upon duty.

Sandy, my wife of 55 years suffers from Dementia. I have the exact same issue. It is truly difficult to get others to understand. I get plenty of suggestions as to what should be done like I'm an idiot and can't think for myself. What I don't get is HELP!
I wish you the very best. Careing for a love one who has Dementia is the hardest job I have ever had.
Stan

I guess it's super common for people who are not the caregivers to be CLUELESS and/or in denial. I get it from my mom's brothers - she has dementia. Started with MCI which I thought was ridiculous because of all the issues I saw since she is living with me. They were like "where did she get that diagnosis?". I explained a little (via text) but they just don't want to get it that big sister is going down the slippery slope. Oh well. It is annoying and I don't look forward to the day I put her in memory care cuz I'm sure they'll give me more flack but they can bite me. I'll blow them off it they push me to hard because it's just mean, IMHO.

Sandy: Even though there are 19 other answers, I'll still give it a shot. Because Geddyupgo and CTTN55 mentioned that you've made other posts revealing that it is your 92 year old father with whom you live and it is your sister who has PoA and is the Executor of the will, I went to look at your profile to get a better understanding of your predicament.

First of all, I haven't 'got over caring' that other people - ESPECIALLY professionals - REFUSE to recognize the severity of the problem. My mother has had Delusional Disorder for more than 40 years, imagining that her former boss (who has been dead since 2012) is pursuing her romantically. For a long while, she has had signs of dementia, but the isolation of the Covid pandemic accelerated the progress. I have spent 17 years trying to get professional help for her, to NO avail. From Adult Protective Services to the head of the famous Payne Whitney Clinic (who is the personal friend of dear friends of mine) - nothing!

A couple months ago, mom called the police to report I had physically attacked her (I hadn't - I couldn't have: I was in the other room! LOL). The police, who know her well at this point, arrived, asked her where I'd hit her (knowing she was lying), checked her blood pressure - it was 180/110, stroke territory - and took her to the hospital. For the first time in 17 years, the police and EMTs were in my corner! I can't tell you what a triumphant feeling that was!

But the hospital was a different story. Her behavior in the ER was aberrant - screaming, biting the nurses - they had to give her multiple injections of antipsychotic tranquilizers to stop her histrionics. And yet, once she was admitted, medical staff denied she had any mental problems, despite abundant evidence, despite her own doctor of many years ordering them to do a full psychiatric evaluation (they did not). The facility, FYI: The Allen Pavilion of New York Presbyterian-Columbia University Medical Center.

I have been wrestling with the utter failure of the healthcare system in the United States, particularly with regard to its most vulnerable citizens, the mentally ill and elderly. I have not 'gotten over' anything. I continue to be FURIOUS, and that fury tends to push me one of two ways: some days, I am resolute that I will persist, I will work to get my mother the help she needs, and I will be an agent of change within this horrible, callous, entirely Capitalistic healthcare system. Other days, I am so overwhelmed, I don't know where to begin, and I want to cry. Or, I go ahead and cry. I can't tell you how to 'get over' the turmoil your situation creates - in my *opinion*, 'getting over it' isn't the aim--the aim is to handle a difficult situation as best you can, as honestly and effectively and comfortably as you can find to do, one day at a time. Really: you only have to live through today.

I, too, have legal issues with my mother. I am the only offspring, but because she still appears to others to have some mental competency - or, more correctly, because regardless of the fact that she is clearly mentally incompetent, no one is willing to help until I have an Order from a Court - it looks like I have to go to Court to have those documents she signed 20 years ago (health proxy, PoA, etc.) ratified, so I can take control of her life before she destroys herself further.

So, in your case, I wonder: can you call a competent attorney, and see if he or she will take your case "pro bono," or can recommend a firm that will? Or, you can call the local District Attorney's office for a recommendation, or a local Legal Aid Society. Because it strikes me, if you are living with your father and doing all the work and have evidence, you could probably have PoA transferred to you.

CTTN55 was pretty much accurate in calling you a "slave." I think - my *opinion* entirely - what you need to 'get over' is playing the martyr, and deal with the situation REALISTICALLY: go to court, have the PoA transferred!!!

Sandy5691: Denial is often the first thought in a loved one's head when they hear that said individual has cognitive loss. Although my late mother did not suffer from dementia, she was a very ill woman with wet macular degeneration, CHF, A-Fib, incontinence x2, U.T.I.s, arthritis and extremely low blood pressure, which required me to move in with her. My sole sibling uttered the words "There is nothing wrong with mother." HUH?! "Her blood pressure is 60 over 40, I responded!!"

Sandy5691, I can relate to your issues as well. My mother to others that dont really know her would say their is nothing wrong with her. I live with her too and I knew way in advance something was off. I mentioned it to my brother who was in charge of taking her to her doctors visits. When nothing seemed to change I went to one of the visits and found that my brother wasnt going into the rooms to explain the challenges. The doctor even told me its normal aging. That set me off cause she had no idea what i was experiencing, hallucinations, etc. I told my sister in law, "does my brother know how serious my mothers dementia is? She replied, he doesnt want to upset your mother.
When my mother and I would get into a heated arguement, which i would try to calm her down, and when I was going crazy, I would call my brother for help only to hear just deal with it . ugh. I know the pain

Have doctor evaluate and diagnose the degree of cognitive decline your LO is experiencing. When family downplays the extent of decline, show them the doctor's diagnosis.

I read all of the replies, including the thoughtful and insightful responses, and a few rude/insensitive comments. Although people may mean well, harsh comments from those who absolutely do not know all of the circumstances, are uncalled for. This is a support forum. People come here, often in their darkest hour, desperately seeking support and/or advice. Too often, responses are insensitive, righteous and dismissive. I'll be looking for another source of support, because I'm personally much too vulnerable to disregard comments that do more harm than good. When you're already at rock bottom, you owe it to yourself to protect your energy.

It's too bad you feel that way. If you reread your second sentence you have your answer.

Your family members know, they just let on that they do. They are glad that they don't have to deal with it, you do.

Here's another example, if you look at many NHs, they are set up where the administration has little to no contact with residents; some even have entry and exits where they don't have to go by the residents to get to their area. Sure these employees can smile, talk etc to any resident(s) they happen to pass, because they know they can go home when their shift is over. This is how your family feels

Good luck to you
Blessings

For starters these family members who are supposed to be involved in helping with the care are not going to lift a finger. You know this already.
Why would they when they don't have to? You're the one handling all of it. So they will skirt around and keep up the denial of how bad the LO's dementia really is because you're maintaining the status quo.
My friend you are the Designated Caregiver and because you live in the home it will all be on you.
Your family is in denial. They like there because it means they don't have to accept anything or help with the caregiving needs.
You have to force them out of it. My situation was very similar to yours. Sibling and grown grandkids in denial of how bad my mother is. My mother, Cleopatra is the Queen of De-Nile (denial) she has never been able to accept the truth about anything.
Her whole life has been lived in a state of learned helplessness. She's so needy that it's embarrassing, yet micromanages every tiny detail and will viciously berate and belittle me if something doesn't meet her demands.
I don't play this game with her anymore. She's lucky if I make her a sandwich and bring her medications.
I wanted my sibling to get a taste of just how needy mom is. I left for three days. In that time the house was basically a pig-sty, my mother became so ill that she had to go to the ER, and now is on oxygen (I don't know if it's necessary or one more doctor falling for a performance). My sibling now knows I'm moving out soon so either she steps up, or the state takes over.
This is the lesson your family needs to learn as well.
Walk away. Even if it's temporarily then let the chips fall where they may.