I have been traveling down the dementia hiway with my mother, long distance caring for the past 6 or so years. She has been diagnosed with alcohol related dementia. She is stubborn, can do the dressing, bathing, eating, and toileting without needing help, the only thing is her brain is not working as well as it should and her short term memory sometimes is not working. She is very hard headed, opinionated and wants to remain in her home. Does not want to do a lot of things that happen to alzheimer/dementia victims, like hygiene type things. I am not against helping her to be there, I am for keeping her in her own home, but she has neighbors who feel differently about her situation, than, we, her family does. They report every move she makes to the police, got the county involved and took her to court to place her in a NH. She won the right to stay in her own home and is receiving meals on wheels and has people coming in for about one hour each day, which the family and social services don't feel she needs, but it is to quiet the neighbors. We also installed cameras in her home which we can veiw privately to check on her well-being and can call for help if it is needed. It is hard to deal with those who feel they know best for someone and try to dictate their wishes on another, I and my family do not feel a NH would be in the best interest of my mother. The post I am placing below says how I feel.

What makes a person "in valid"?

Is it losing their physical abilities...No

Is it losing their mental abilities...No

Is it losing their SPIRIT...Yes

Sometimes a persons spirit is all they have.

I also need to add this disclaimer, I do not advocate anyone making choices based on anothers veiw, each choice for each individual and those they care for needs to be based on what is truly in the caregivees and caregivers best interest. Sometimes it is in their own home, sometimes a family members home, sometimes it is an AL or NH.

I was wondering if anyone else out there had neighbors who just didn't have empathy for a someone who is suffering this awful desease called alzheimers/dementia?

I don't have any experience with this, JAH, so may I ask a question? What is your mother doing to rile the neighbors so much that they feel the need to call the police?

My mom was very fortunate when she lived in her own home -- her neighbors looked out for her and would help her if she seemed lost or troubled.

I can't imagine people being so "unneighborly" as your mom's, and if it were me, I'd want to get my mom away from there.....and away from them. I do understand she wants to stay in her own home. My mom was mad at me for a long time after I insisted she move in with me, but while she never seemed to forget her own house, she eventually adjusted to life here.

I am concerned, though, about how much stress the neighbors are adding to your mom's life right now. And it sounds like this problem will likely not go away anytime soon, despite what the court had to say about her abilities.

I do sympathize with the situation you are in, and I'm sorry I really have nothing to offer you in the way of concrete help.

Hang in there and best wishes.

I have the exact oppisite problem. I am a long distance caregiver too, if you could even call it that anymore (1,200 miles) I have become a world-class worry-wart, that is for sure.

I wish someone would care, be it a neighbor, friend, Daughter, Agency, Police, APS, anyone. But nobody does? I suspect because when they go 'out' they dress kind of nice, and they are a 'cute' couple, she lets him do most the talking, he is a retired Professor, and always has allot to say!But if you saw the inside of their house, or the way they really live, you would flip!

I do not have any advice, but I am intimately familiar with the word obstinent! Doesn't mean I can spell it though! Hey, do we have spell check here?

Wow, JAH, thanks for that line about our loved one's "spirit."
It gave me great pause as I try to deal with my Dad's
obstinacy in his ALF. I have to keep kicking myself,
hard sometimes--ouch !--to be humble in my actions
and my reactions.
Now, to humbly apologize in advance for my "pollyanna"
tendencies, because I know that often can grate on the
nerves of someone facing real problems... but I do agree
with Sky on the bright side of this. If something serious
were to happen to your Mom, at least one of those
busybodies would be really, really quick to pick up on it!
Good luck, and God Bless!
Carol

I agree that a person has the right to stay in their home as long as it is safe for them. The camera idea is brilliant! My MIL still is at home also, but falls frequently, which is a concern to me. If they are doing strange things like she does ie, turning off the heat in the coldest month of the year because she is afraid (paranoid) about carbon monoxide, denying the diabetes diagnosis and refuses to care for herself properly, but continues to drive (I know the issues my husband faces when blood sugar is off, and he cannot drive when that happens!), I think it's time for in-home assistance. But if they are doing okay, I say let it ride. I too would like to know what is upsetting the neighbors so much that they are calling authorities frequently? If she is running around outside totally naked, or getting violent with them I could see, what is she doing they consider a danger? Best of luck to you my friend!

While I agree with you, JAH, on the subject of someone remaining in their own home, if it gets to a point where they are harming themselves or in danger of harming others, it's time to step in.

My mom certainly wanted to remain in her home after Dad died, but there was just no way. She would never remember to take her insulin and she is incapable of using a stove any longer. I don't think she would have lasted a week on her own.

But as long as your LO is managing on her own without any dangers, I don't see the problem. Just my 2 cents worth.

Well as you know, I think your camera idea is absolutely brilliant!!! I think though that is what other people don't get. I'm sure the neighbors don't understand that you know what is going on even without being there. Your approach to dealing with this is a very new (and I think exciting) way of doing this and most people resist new ideas.

I'm sorry the neighbors are causing so much trouble. I think you are doing the best long distance caregiving that I have ever heard of. You will know when the time is right for a change. I too am curious as to what the neighbors problem is.

Hi Everyone,

The problems are that she walked out in the rain in 70 degree weather, there was a police report, she walks up on the neighbors porches and knocks on their door. She only does this about maybe once or twice every week or so., there was a police report.She knocks, if they don't answer, she leaves. They say they are worried about her safety, I don't beleive this is true. One neighbor blocked the steps to his front door because he said he was afraid she would fall on his steps, so she went through his garage to his other door to knock and he complained that she could get hurt in his garage, this was before the county took her to court and she won the right to stay in her own home. Before the court case he removed the barricade and mom was still in her own home. Her only real problem is her repeating herself and she doesn't want to clean up as well as the neighbors feel she should. She only takes her cancer medicine and I see she takes it on camera a couple of times ( don't watch her every minute, but this leads me to beleive she is doing her meds correctly) and we only leave a weeks worth at a time and it is empty when we go to refill it. She has nothing else, other than the cancer( which is in remission, the Dr said he cannot find it any more, so she basically doesn't have any clinical proof she has cancer and early dementia wrong with her and she wants to stay in her own home. There are people coming in daily to spend an hour with her, she gets meals on wheels 5 days a week. We bring her food, lots of chocolate milk and juice and cereal bars that we tell her is candy bars and she eats those instead of real candy bars. We freeze food that she microwaves and we have disconnected her electric stove, she doesn't smoke, gets no alcohol.The DA from her county has requested all police reports sent to him and today is having a telphone conference with the social workers and all concerned about mom. I feel she is being singled out and I don't know why this is happening. The court has made me her guardian and I feel that she is safe in her home and don't know why this is happening. This is just a small part of what has been happening and mom is in her legal right to refuse a NH, that is Wisconsin law just enacted about last November. So this has been going on for awhile, any questions feel free to ask, I am at my wits end to figure out what the agenda is that is causing this.

Forgot to mention she also wears an Alzheimers bracelet and is registered with them. We have tried to cover everything, but any suggestions would be appreciated, also need to say mom is bullheaded, stubborn and opinionated. I better watch out, they say the apple doesn't fall far from the tree.

JAK, I can certainly see why the neighbors seem like a pain, not a blessing. I hope it is just not that old 'everything is fine on our street' attitude rearing it's ugle head! My Mom has a best friend since Grade School (Oklahoma City) who lives less than 15 minutes away(California now & for 65 years!) The last time I sent her an 'on-line' Photo Album of my last visit, because there were allot of cute picrures of Mom in it, she said "I am sorry I am not in the position to visit your Mom at this time?" What? I drove 3,270 miles to visit her! And camped on the beach?

Anyway, I am just saying that even the people that should care, don't care, and it seems your Mom's neighbor is much more worried about a Law Suit, than your poor Mother. Shame on him! I can also see that you have done everything, by the book, and I can only imagine how diffficult, and time consuming that was. And to have people challenge you now? Well that would really UPSET me too!!!

Maybe you should write a Book about "The best ways to be a Long Distant Caregiver!"

Just a thought, JAH. You don't mention (or if you did,
I missed it) any family members beyond you and your
daughters. When you talk about your Mom being
singled out and this whole DA and social worker
involvement, it struck me that perhaps it's not just
the neighbor(s) pulling strings, but maybe a family
member--a sibling, uncle, aunt--someone who
disagrees with your approach and they may be doing
an end-run on you to effect a change more to their
liking??? I may be totally, way off base. It just
looks like the kind of behavior families often resort
to. I'm so sorry you have to deal with all of this on
top of all you do for your Mom. I wish you all the
best of luck.
Carol

Looks to me as if you are doing a good job. The neighbors need a reality check. Hang in there.

I have been trying to figure this whole thing out, there isn't any living relative left for mom except my brother and his two sons and me and my two daughters , my brother is all there is living nearby and he and his sons are in agreement that mom should stay in her home. It is not a problem with a relative, it is basically the particular group of neighbors in her area, one in particular is stirring up the others. Also there is one police officer that writes up reports and then adds his own opinion to them, which I think is highly unethical. Also, my mom is a person who speaks her mind and may have caused problems for her now because of that. I cannot understand why the DA is so involved with this, the county seat is over a hour away from where mom lives and this DA is pushing it. I know a lot of the reports that were sent to court had falsehoods in them and we were prepared to prove it, but then they came to an agreement, I was made her guardian and we are still having problems, even after all of this being done. I just don't understand why this is such a big deal. There are people out there that have no one and mom has us and there is all this hassle.

Gee whiz, it sounds like you have pretty much done all you can to ensure moms safety and well being. Sounds like the neighbors just want her gone or something. Big deal, she knocks on their door once in a while. Now if she was calling the police on them and accusing them of stealing (which my MIL does! lol), then I could see why they'd be upset. Keep us posted on how the phone conference went today, and also how things are going. Blessings to you, you are doing a good job!

I am sitting here trying to put myself in her neighbors shoes. If there was someone living on my street with dementia and I knew they were living alone, I would be concerned. If I saw them standing in the rain, I would be concerned. If they were walking up steps to knock on my door, I would be concerned.

On the other hand I would have no idea how they functioned in their own home and I certainly wouldn't know about cameras inside. That would certainly ease my mind. Do her neighbors know about what measures you have taken?

Of course I don't know these people so don't know if they are just a pain in the rear or if they are truely concerned about her. Have you talked to any of them?