My husband is probably early stage Alz or advanced mild cognitive impairment. He passed his driving test w flying colors. He is still working for a few more weeks and is retiring because he felt it was best. Most of our friends can not detect much difference in him but it is clear to those of us that see him day after day and to the doctors. He went to Wharton (at the same time as Trump although Trump was never seen in any classes by anyone) so is highly intelligent with a good supply of cognitive reserve. Our children are afraid to let him drive their children 8,9 and 11 and are holding off any visits alone at our home although I am fine. We are in early 70s. I have stopped telling them anything about his condition and they never ask. We see them often. They even said no to coming to his big office retirement party!! I know my kids have made determinations about what they will and will not allow but refuse to tell us what their “rules” are. I have asked them to share their thoughts so we can address their concerns for the safety of our grands and our desire to have them spend an overnight at our house. They ignore those requests. At our continual attempts to set up time w the grands they come up w some compromises but will still not talk to us about their thoughts. I am a well educated former teacher and very active in the volunteer world and sought after for leadership positions. My therapists ideas have not worked ( yes2 therapists!) and we want memorable moments w the children while my husband is still highly functional. What can we do? We live an hour and 20 minutes from both children and I am afraid of a face to face- my son gets nasty and my daughter withdraws. They have not asked either of us how we are doing and when we were originally given the diagnosis they were at the meeting and did not even get up and hug us though I was hysterically crying. My daughter is a social worker with an MSW!! Help!!

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Al; I'm going to give you an answer that you are not going to like.

Your childrens' first priority in life is the health, well-being and safety of their children.

I would NEVER let my children be driven by someone with a diagnosis of MCI or early dementia. I would also not allow that person to drive me. Your children are correct in that action.

Your priority is your husband's care. So what if your husband has some sort of unpredictable and possible dangerous behavior while you and he are with your grandchildren? Whose safety and welfare do you look out for first if your husband darts into the street while you are holding the hands of the two grands?

I think you can have plenty of memorable moments with your grandchildren with your adult children present, don't you?

My daughter and son in law are in a fairly similar situation. Paternal grandfather has early dementia and was found to be undressing 4 year old grand-daughter in a suspicious way. He is no longer allowed to be unsupervised around any of the grands. They don't live close by, so this only comes up for my daughter once or twice a year, but for the family that lives nearby, it's a constant source of worry.
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When my first grand-nephew was born, I picked up him from his parents on Saturday mornings and took him to my parents' home for babysitting even though my father had vascular dementia. Our weekly routine was after a few hours at my parents' home, I took the baby back to his home for the afternoon, put him to bed for the night, then stayed until his parents returned from date night. The only time I saw my father truly happy during the couple decades of his life was when he was playing with his great-grandchildren. Hanging on my bedroom wall right now is a photo collage of my father playing with his great-grandchildren over 10 years. Dad had those experiences with his great-grandchildren because I gave them to him. I supervised those visits and I _never_ left him alone with the children, not for one single minute. The children might not have understood why I made everyone go into the house with me while I fixed snacks, but they went with me just the same. When the oldest great was 6 and there was a new infant great and two terrible twos, I started babysitting at my house (across the street from my parents) and only took the kids to my parents to play in the yard. When the oldest was 11 (and the youngest was an infant again), I stopped taking the kids over at all.

The reason this worked and Dad got to have those meaningful experiences with his great-grandchildren was I acknowledged dementia had broken his brain and made Dad unpredictable. My mother was Dad's advocate, I was responsible for the children's emotional and physical safety and their parents could trust me to act in the children's best interest. If Dad started having a bad day, I could always just take the children and leave; and sometimes I did.

One person alone cannot both deal with a dementia rant and protect and comfort young children during that rant. Your children are right. When you continue to advocate for how your husband's dementia really isn't that bad, you are probably reducing their ability to have faith in your capacity to protect the grandchildren. I'm so sorry dementia has brought this limitation into your life.
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lealonnie1 Dec 2019
"When you continue to advocate for how your husband's dementia really isn't that bad, you are probably reducing their ability to have faith in your capacity to protect the grandchildren."

I think you said something perfectly and eloquently at the same time, with empathy, based on your own experiences. Bravo!! I hope the OP reads THIS comment and takes IT to heart the most out of ALL of them.
The last time I got into a car with my step dad I did not know he had been given a diagnosis of early stage dementia. His driving was terrifying and I had to threaten to call 911 from the back seat to get him to pull over. Mum did not see how bad it had gotten. After that day Mum did all the driving.

I am sorry this is going to sound harsh, but if you truly believe, "He went to Wharton (at the same time as Trump although Trump was never seen in any classes by anyone) so is highly intelligent with a good supply of cognitive reserve." then you have your head in the sand. If you have mentioned this at all to your adult children, they are probably worried about your cognitive ability too.

My Step Dad was a well educated former professor and accountant. He retired from his last volunteer position as the Treasurer for a Provincial organization a few months before he died of cancer. Most people..."can not detect much difference in him..." too. His daughter flipped out when Mum said he had become childlike. She used all the arguments you have in your post. He is highly intelligent, well educated, and can 'pass' as ok to many people. None of that protected him against dementia.

Your adult children have clearly stated the rules. No rides with Grandpa. No over night visits. No visits without them present as they do not trust your judgement.

We are in the holiday season. Attend the kids activities at school. Meet the family to go to a seasonal event. Rent a hotel near the kids and spend a couple days in their community. Meet them at the pool, the skating rink, meet them at a hockey game, does not have to be major leagues, youth hockey is lots of fun, meet them all for dinner, create a caravan and go looking at Christmas lights, tell the kids stories from you childhood.
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Quite often lately I've been reading posts from people explaining that their loved ones who have been diagnosed with dementia/Alzheimers/MCI etc. are also 'highly intelligent' and college educated. As if a diagnosis of a brain disease makes them 'stupid' or negates the fact of their intelligence or college education. As if to say that a person of intelligence 'cannot' or 'should not' be given such a diagnosis.

A diagnosis of a brain disease or impairment does not render a person 'stupid' or erase the fact of their brilliant education or the fact they're intelligent. It simply means they are suffering from a brain disease or impairment, same as a person who is diagnosed with an organ disease.

No one, I believe, is immune from disease of ANY kind, whether they are intelligent or average, large or small, wealthy or poor, male or female. We're all human and susceptible to disease of ALL kinds, unfortunately. Nobody who's been diagnosed with a brain disease is any 'less than' a person who's been diagnosed with a bodily disease.

I am sorry for the pain you are both going through with your children & grandchildren. I sincerely hope that you can spend a whole bunch of quality time with them in your home playing games & doing things together for many more years to come.

Wishing you all the best of luck and success moving forward.
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MarieM462 Dec 2019
Ronald Reagan had Alzheimer and I never heard anyone say he wasn't intelligent.
There’s two sides to every story. My friend will not allow her mother to drive her children anywhere and will not let her be alone with them either. Her mother is 82 and doesn’t understand why.

The reasons: Mother left a loaded handgun out on her nightstand. With a toddler and two other children under age eight in the house. When confronted, she denied it and lied, said the cleaning lady must have done it.

She also drives and has no business doing so. Runs through stop signs, hits curbs, and has always been a nervous driver.

She is profoundly deaf and won’t wear hearing aids, and could not hear if the kids needed her.

Even with all this, she cries and pouts about why her mean daughter won’t let her take the grandkids. It’s better to let her complain than risk their kids’ lives.

The parents have the final say on what their kids can/can’t do with grandparents.
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losingsituation Dec 2019
I totally agree, we arent seeing the whole picture here. My BIL doesnt give a CRAP about my MIL, but they were never close, and she basically stood by while his father beat on him until they threw him out at 16 yrs old. So yeah it's sorta hard that he isnt helping with MIL, but at the same time, I cant blame him.
You won’t like my answer either. You have no rights here and your children are correct in not wanting your husband to drive the children. I understand that this situation is very upsetting and I don’t blame you but your children get to decide who their children will see and what is best for them. They don’t have to tell you their rules either. The only thing I can suggest is that your children try to educate themselves on the stages of Alzheimer’s. Maybe they will loosen up a bit. But if they won’t, you will have to let this go and see your grandchildren when your children allow it.
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BarbBrooklyn had some very good points.

I'm sorry, but I also side with your kids. They have observed things that make them unwilling to leave their children alone with you. You will not change that.

You want them to tell you their thoughts so you can make a plan to make it ok. They don't want a plan. They have their plan - it is supervised visits. Be glad it's that at least, and not "You can't see the grands".

You will just have to enjoy time all together, and make it work, I'm afraid.
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There is nothing you can do. You have pleaded your case and they have made their decision. At this point, if you continue to push, you will only be pushing them further away.
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Education means nothing to this disease.  My mom goes to a day program and there is an Astro Physicists who is a client.  I was talking to his wife and she said they always thought "education, education, education is the thing and everything will be good as long as your educated" and now he can't even go to the bathroom without help.  Don't get me wrong getting a degree is great and I'm not putting that down it's just not what's important now.  Don't focus on how brilliant he is or what education he had.  It doesn't matter.  Just continue to care and be there for him like you do.  If you only get to see the grandkids with their parents, then do that.  It's not what you want but what's important is spending time with your grandbabies however it has to happen.
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You post gives me a very uncomfortable "feeling".
You state "My son gets nasty" and "my daughter withdraws". You describe a lot of problems here, and the least of it is your husband driving. I agree with them. With his diagnosis he should not be driving and nor should his Grandchildren be with him if he does. That comes from someone whose brother chose to ignore warning signs and had a dreadful accident as a result; was diagnosed in the aftermath of that accident.
What I do see is a troubled future. First of all, there is nothing to be done about that. You have already been to two therapists whose ideas have not worked. NOW I am concerned about YOU and about your Husband. You say that he has just retired. That would mean he has worked into his 70s. I am going to make an assumption here that you are comfortably situated financially. You have described a problematic relationship in which you cannot communicate with EITHER your son or your daughter. NEITHER! and that is very concerning right now. So I am suggesting you have bigger fish waiting to be fried here and I worry for your future with the son, the daughter (either/or) or worse yet BOTH in charge of your future through POA or Trustees of Trust or guardianship. They sound, from your description of their refusal to communicate with you, as though they might cause a good deal of trouble.
SO what I am suggesting is A) that is their choice for their children. Fine. Let it be. Ask how you can visit or see the grandkids, accept that and move on.
B) take care of your husband AND yourself now and do so with great care. See an elder law attorney. Get will and trust in place at once. Get POA for you to care for your husband and be CERTAIN that neither your son nor your daughter succeeds if you are unable. Have a fiduciary appointed to take on this work and be paid for it. They would have YOUR interests in mind. I am afraid of your Son with his anger and your daughter with her fear. If the two of them are the choices I feel you and your husband are in danger.
Sorry if I overstep bounds, and if I have misjudged them from what you have said here, but we hear so many disasterous fighting siblings warring over parent's money and "well being" well before they are dead that I am now afraid of these two, and what their "failure to communicate" could mean, and could mean for your future.
Get thee and thy husband to an Elder Law Attorney as soon as you can. Protect yourselves. You are the Lioness at the gate now, and in our 70s (I am there, too) we are aging Lionesses waiting for those that prey upon the aging.
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cherokeegrrl54 Dec 2019
Well said and right on point Alvadeer!!
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