boyfriend has early dementia, his family hate me

First off,
Thank you all for being here. My situation is multi problematic. First off, I want to share my age with you. I am 61. My boyfriend of three years is 62. My boyfriend is also widowed, now six years. He told me on our second date three years ago, he had a bad memory. We all make excuses in the beginning.
He went to the neurologist and did o.k. on those tests but in the real world, it is apparent it is early dementia with confussion, very bad short term memory and loss of words. He is still working but I see
after reading all the symptoms that he tests to have frontal lobe damage shown by test and with MRI.
The double problem is, his adult children don't see it and they also don't like me and have forbid me near their small children. I have done nothing wrong, BUT, call off the wedding when I saw where this was headed. Meeting someone in in your late fifties and I have serious orthopedic issues, and don't want to be nor can I physically take care of another human being, has not gone over well with his entire family.
Of course, me identifying this, has made them dislike me more.
I am the power of attorney for my boyfriend and am basically his frontal lobe, since he can't make decisions, I do it for him. He still has a voice but he can't communicate effectively.
My boyfriend is on Namenda and Aerosept, as well as Adderol.
He recently went through a red light on his way to work. He never saw the light and he totaled his car. The stupid young neurologist wants him to keep working. He is of the philosophy, you have to keep your brain active or it will get worse. In my state, we have driver testing for people who are in that grey area if they should drive or not. He took the test and passed. Because his problems are intermittent it's not apparent to the neurologist but only to me who has lived with him.
Now I found him an apartment. I couldn't have him locking my cats in rooms and leaving doors unlocked and lights on. It was getting to be too much for me.
Has anyone had to deal with beginning dementia and a widower whose children hate you?
I'm in a tough spot as I love this man. Any replies would be appreciated. Thank you.
Philylady

I am so sorry you are going through this.Its not easy,and being your boyfriend is so young,it makes matters seem all the worse and unfair.His children should be glad you are helping him,as that takes thhhe emotional load of caretaking off them.I see no reason for them to be angry,other then the sticky area of POA.It also is better financially for both of you not getting married,as if he eventually has to go into somekind of assisted living,they wouldnt be able to take your money to cover his care,because you arent married.Im not sure on all states..but Medicare/Medicaid only pays for so many days a year.Think it might be something strange like 122..??then the rest either hs to come out of pocket,or the person brought home for care.Sometimes dementia goes along and gets no worse,other times it takes a progressive course.Its not easy being a caretaker.m not sure either about the driving.Google driving/elderly or driving/disabilities for your state.I think each state is differentg on those rules also.I am craetaker of elderly parents with no help from my siblings.*caretaker..sorry*..and undeerstand what you are dealing with.You might also try googling sites dealing with dementia,even Healthboards.They might have more info and people with input.Take care.And good luck dealing with his family.Maybe if they spent more time with their dad they would understand what you are going through.XX

It definitely sounds like a difficult position you are in. Does your boyfriend agree that he has some cognitive limitations? What are his thoughts on continuing to work/drive? Perhaps if he is okay to work but not drive he could access some sort of public transportation? Or other types of assistive devices could be put in place such as an alarm if a door is not locked? Family situations are always tricky. Don't forget to validate yourself and all the hard work you are doing.

I don't get it. You can't marry him because you can't lift him, because some day, he might have mobility problems? They don't always have mobility problems.

Why wouldn't he just have a nurse or aide come in and do the lifting, if it ever were to get to that, which it might not? That's what a lot of people do. Just have a home health aide. Often covered or at a low price from Senior Services.

I don't get the thing about the cats, either, or why an apartment is better, or why living arrangements all are decided by you.

And the family is angry at you because you broke off wedding plans? Why? Do they think if he has a wife, they won't have to take care of him as much, or what?

The reality is that when someone has dementia, their spouse, the person's family, even the spouse's family, all pitch in and give a hand, and don't leave any one person having to shoulder the whole burden alone.

Furthermore, if he has early dementia and it's a quickly progressing type, he may not be in anyone's home, in anyone's care, for long. He may be headed for a nursing home and more disability than can be managed in a house or apartment, even with an aide. It just depends on how quickly it progresses. Different types of dementia, even certain individuals with the same diagnosis, have different needs for care and supervision, and hit those points where they need more help, sooner, or later.

It seems like both you and the family are assuming you know how disabled he's going to be, and what his needs will be and when, way before it's possible to know those things. You need to more play it by ear and see what happens. It can be comforting to think you know how things are going to go, and get your mind all set on how things will be, but fact is, you have to stay loose and just see how it goes. He may need a lot of help very early on, or not.

I know elderly men with dementia who are in their 90's, and still doing farm work, raising a garden and chopping wood. Forget everything, but happy and contented, and physically healthy. Not even near to looking at a nursing home. Fellow down the road, died at 92, in his home, sure had dementia and forgot things all the time, but his wife would just remind him and on they'd go. Frankly he was as happy as a clam right to the end and no trouble or bother to anyone.

Others who have vascular dementia, heart disease, other complex medical situations, and are taking big steps down, rapidly, needing full nursing home care by 70 or earlier.

My dad was in very bad shape by 76, even though his symptoms of dementia were extremely mild at that point, he didn't handle it well. Some people do, some don't.

Some people get delusional, some wander into danger, well, some don't. And quite frankly are a pleasure to live with and pose no real trouble or bother to anyone. just recognize their limitations and enjoy life together, through its different seasons.

Don't make decisions ahead of time, you can't predict what his needs are going to be.

smithywise wrote:The reality is that when someone has dementia, their spouse, the person's family, even the spouse's family, all pitch in and give a hand, and don't leave any one person having to shoulder the whole burden alone.

While this might be ideal, this does not always happen.

I think what the OP was trying to say was that it is a big responsibility to marry someone knowing that you will be taking care of them (if not physically, then emotionally) for the rest of their lives. Especially when this person is already showing signs that they will need to be taken care of vs. having a mutual relationship. Perhaps this is just not what they were looking for in a relationship at this point in their lives.

I hear what you are saying that you can't predict exactly how things are going to be, however marriage is a big commitment. Ultimately if the OP isn't ready for that type of commitment, regardless of her reasons, then that needs to be honored.

Thanks for all your replies. My boyfriends father went out of work early with the same symptoms. so did his grandfather. My boyfriend understands his condition, but other times he is in Denial.
when his father passed away last year his dementia was worse but the same type as it appears what
My boyfriend has. My boyfriend cannot retain the information he may have heard.
Since I posted last the psychologist sees that he does have dementia. I am Leaving it up to him to tell my boyfriend's children About their father's diagnosis. His father suffered a stroke and I was warned that my boyfriend is at risk for having a stroke. Based on his father and his is grandfather and what the neurologist said,I can anticipate my boyfriend will need more care then people can give at home in time.
I understand everyone has to be involved in the patient's care. If they choose not to welcome me into their lives that will be difficult. Hopefully that will change in time. Right now his daughter is not returning his calls.
It was a mutual decision to call off the wedding. I apologize for the wrong information. It
Was also my idea that we marry in the first place. My boyfriend is in capable of making decisions and that has gotten worse a few years before I have met him.
There also is no public transportation for him to get to work. I worry about him Daily, as he drives a forklift, as part of his job. The Neurologist put him on so much Adderall,when he speaks he sounds like he is on speed. Does anyone know if Adderall is helpful in dealing with dementia ?Does anyone here know how long the Namenda and Aricept last From onset of diagnosis?
I appreciate all your replies. It is just that I think everyone's been dealing with the snow I have not been able to get back with you.
Thank you so much for the support.
Hugs,
Philylady

For example, a period I talked rapidly was when I had fear to lost my concepts and my ideas (no drugs).
So I think drugs are often illusory, they act on the symptom and cause advances.