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

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.

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)

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.

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!

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

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.

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!

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.