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My dad is 92 and officially has dementia. We determined 6 months ago it has gone beyond mild cognitive impairment. Yes, he has some bad days. Yes, I don't agree with some of his decisions but I think that's more just 'him' and not the dementia talking as I believe some of his stubbornness is just because of who he is and has been for many years. But he needs assistance and I do the best I can to line that up for him, as I work full time and can only get there on the weekend. I have been going there every Saturday for 3-1/2 years. I know him better than anyone. We have care people for 4 days a week, 1/2 days. He doesn't want more than that right now and prefers to keep mornings to himself - the care comes in the afternoon. We are close to adding a fifth day. The caregivers are awesome. I'm really happy that they keep their eyes on him and his house is much cleaner! We also have a care manager. There is another service that comes in for physical therapy to keep him mobile and he has another friend who comes over to mow his lawn (he still lives on his own). Now we have a new nurse who does wound management. She has been there twice. I find myself getting upset inside when people who do not know him judge him. She says, "Oh, well, you know. Your dad DOES have dementia!", as if to say he can't possibly know what he's doing. I have found this more than once and it really upsets me. People discount him - count him out - because he has dementia. Like he no longer has a brain in his head and that everyone needs to do everything for him. He wants to keep some independence and I do the best I can to allow that. How do I get beyond that? I know this week I will be doing battle with this new nurse and I'm not really sure what I will say. She doesn't even know him. Sometimes I feel as though people treat him like he's stupid and he's not (sometimes he catches ME on some things!)

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Babs, good for you. I agree that as long as he is doing good and is safe he should be allowed to stay home.

My dad went to AL, hated every minute of it. Had big plans that he wanted me to facilitate. Nope, you can do whatever you can manage to do, I could not in good conscience help him. Well he bought a vehicle, got all the licenses and insurance, found a place to live 1000 miles away, loaded up and headed out. I am so happy that he is able to do it his way. He said he would rather die in a parking lot than live in AL, who am I to take that away from him.

Even young people make stupid dangerous decisions, yet we don't lock them in facilities, why do we feel the need to control our elders when they are still viable.

Modern medicine keeps bodies alive long after the spirit has left, this is the stage we need to intervene.

You're doing a great thing by your dad.

Be careful of a nurse, they are mandatory reporters and she could get APS involved and that could be a nightmare. They will intervene when no problem exists and turn around and leave a group of seniors in a horrid situation that should be shut down with charges filed. No sense to their actions.

Keep up the good work, your dad is blessed to have you.
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Babs75 Sep 10, 2018
Lol, APS already involved. I have them on speed dial. They were the ones that pushed for guardianship, which I have done. She and I actually have a good working relationship. They have closed their case for now, as there are no emergencies at this time.
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No doubt your father is a wonderful person who may still strive for his independence, however, I'd try to listen to what the professional caretakers are saying. No matter how vital and intelligent a person is, dementia robs them of their ability to make sound decisions and to use good judgment. The dementia patient may strenuously believe things are a certain way, but ,they aren't. And to believe them and allow them to have their way on it, could result in harm to themselves.

You say that he has a wound care nurse? I agree with Barb about how except for the early stage of dementia, a person really can't live alone. They need constant supervision. I'd try to read as much as possible and discuss your dad's care with his doctor and the care manager to see what level he may be at now. Sometimes, it's good to spend a couple of days around the LO so you can see just how they have been affected.

My LO is in Stage 7 of dementia, can't talk, walk or feed herself, but, I treat her with the utmost respect and ensure that all around her preserve her dignity. If anyone in your care team doesn't do that, I'd discuss it with the supervisor to get that straight.
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Babs75 Aug 27, 2018
My dad still tinkers around the house, does a little bit in the yard (as much as his mobility will allow), organizes his own bills (I write the checks - he shakes too much but he still signs them), takes his own meds (organized by me). He's what I was told is a 'tweener'. Not ready for memory care yet but should not probably be on his own but will not move the assisted living so we have stepped up his level of care at home. An awkward situation.
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I'm probably not approaching the whole thing correctly but it works for dad and I. His big thing is that he wants to work as a 'team' which generally means he wants to run the show. I've heard it over and over again. I don't let him get away with that too much except where acceptable. Still let him thing he's making decisions (when they've already been made for him). But I do step in and put my foot down and tell him this is the way it is going to be. He needs that and then he thanks me later. I've been exposed to many people in the caregiving business who don't think like this - like I should rule with an iron hand. That absolutely does not work with my dad, dementia or not. More flies with honey..............
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Hello Babs,

If you encounter a nurse or a Certified Home Health Aide who cannot properly care for your father, then it is time to move on. I work for an agency in New Jersey called E & S Home Care Solutions. I have helped train and assist with Caregiver training too. Health care professionals need to understand the complexity behind his condition or at least respect his condition.

You should try a second opinion or continue looking. You will find the right care for your loved one. You shouldn't expect anything less for your father. I hope your situation improves!
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I know what your going thru. It’s hard to find good reliable honest people to take care of our parents . We can’t find a good person for my mom who has Alzheimer’s she’s 84.
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My problem was they didn't see how bad my Mom was. My husband being one of them. The rehab therapist said, she can't follow directions, she can't remember what we did the day before. And to both I said, she has dementia.

This wound care nurse is only there maybe 1/2 hour? I wouldn't worry about her. At least she is aware he has some form of Dementia. She will only be around long enough to heal the wound. His daily caregivers know him. Thats the important thing.
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I think when most people hear that someone has dementia, they automatically think the person is at the worst level of the disease. People don’t realize that there are many stages of this disease. I’m sure my own mother had it for a long time before the disease became so severe she had to go to a facility. I noticed her paranoia a few years before.

Maybe when someone patronizes your father or otherwise treats him in a way you disapprove of, you could politely tell them that Dad is handling his disease very well. Yes, he requires some help but is still very capable, and when he’s not, you will explore other options.

And yes, dementia does magnify qualities the person had all their lives. With my mother is was paranoia and negativity.
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It is a general rule that people who are beyond the very mild stages of dementia should not live unsupervised. Is that what the nurse is telling you?

What kinds of "poor decisions" has he made out of stubborness? Are they things like leaving the stove on after cooking or leaving the house not dressed for the weather?

My mother's dementia did not change the fact that she was an intelligent person. It did change her ability to make intelligent and safe decisions for herself.
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Babs75 Aug 27, 2018
I think his biggest problem is that he won't spend money on things he should. He is a product of the depression. He has plenty of money, more than he will ever need for the rest of his life but he won't purchase good food, or spend money on things because he has so much anxiety about spending down his money. Maybe in his mind he is afraid he will run out. He needs help making decisions (hence the need for the guardianship/conservatorship we are working on). But my dad has always been that way. I remember growing up. It would take him a YEAR to figure out what car to purchase. He just couldn't make the decision. I have noticed something (or maybe it is my imagination). As he has aged, any little idiosyncrasy he had when he was younger is now worse than it was before. People that don't know him would not know that much of his behavior has been this way for a long time and is just the way he is. But he really manages pretty good on a day to day basis and I know in his mind, he doesn't understand about what the fuss is all about with how he lives his life. He knows when his bills are due even though I am there to write the checks (he signs them). We write lots of stuff down so he can keep his schedule straight (too many appointments!). I keep him tasked with small things like filing away the bills after we pay them. I give him small 'mini' assignments he can do during the week since I am not there. He usually calls to clarify the instructions several times but it makes him feel like he still has a purpose. I just don't understand why some people write him off like they do.
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When this nurse makes that kind of remark, very firmly tell her (or anyone else) “We feel that Dad is doing VERY well!”. A good, cold glare at her wouldn’t hurt either. If you continue to have issues with her, ask the agency to send someone else.
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