Anyone here dealing with dementia in a loved one? Have you had to buy a GPS device? Any recommendations? My dad is still ok to drive short distances but won't be some day. I don't want that day to be when he has taken the car out.
What type is best? Watch? Key fob? Shoe? It seems like there is a risk of them not putting it on, whatever kind it is. I don't think it will be a secret, but pride could also be a factor. He does wear a Medic-Alert bracelet willingly (not enthusiastic about it though lol).
If you're worried about him actually getting in the car and driving, then I'd try to find something you can attach to his keychain.
I need to look into these options too. my dad was recently diagnosed. For now, he's good. He doesn't go out driving unless he's with my stepmother. but, as you said, one day he may start going out when he said he wouldn't.
When that day comes, I'm going to STRONGLY advocate for taking the car away. I know my stepmother is dealing with pride issues too. But when it comes down to pride vs safety, safety has to win.
Many hugs. My aunt was diagnosed years ago and ever since, I've been waiting for the day that my dad would be diagnosed. I was hoping it wouldn't come. But, it did.
I'm sorry to hear about your dad. My GMIL stopped driving before we needed to explore these options. We had been talking about the watch option when it became necessary
Post by mrsbuttinski on Feb 23, 2017 9:26:11 GMT -5
I am dealing with dementia with my dad. You have my sympathies; it is difficult. Especially around issues like driving and financial independence. What does his neurologist say? Has he been evaluated for competency around driving by a specialized OT?
My own dad has 2 distinct types of dementia one of which led to a sudden onset of symptoms and loss of skills related to ADLs. Brain imaging shows that one of the dementias has impacted the areas of his brain associated with executive function and spatial reasoning.
My concern is that if your dad is impaired enough that you feel he needs to be "chipped", which is a very controversial issue among some advocacy groups, he probably isn't safe to drive. You might want to check with his doctors to see if he's been told not to drive. If he is driving AMA, his insurance will not cover him should he have an incident. I'm curious, are you comfortable enough to let him drive with Charlotte in the car?
I'm sorry to hear about your dad. Dementia is awful.
By the time my grandma was bad enough to not drive, her car and license was just taken away. My grandpa was healthy with the exception of vision problems so he couldn't drive them around anyway. So I don't have advice there but just wanted to send you and your family best wishes as you navigate yourselves through this.
akafred - First, so sorry you're in this situation. It's extremely tough. My grandfather has Alzheimers. My grandmother let him continue to drive much longer than she should have. There were multiple instances of him coming home and not remembering where he went. It was a miracle he made it home at all. We wanted her to take his keys or disable the car long before she did, but it is definitely an independence issue for dementia patients. He did get in an accident, but luckily he was following my grandmother in her car and only damaged their two cars. His went in the shop and never came back (she sold it), so that ended up being the solution.
For the safety of everyone on the road, he should not be driving as soon as your family feels it's not safe in the slightest. It's really tough to handle it with the patient, but extremely important.
So sorry to hear about your dad. Dementia is so hard. My grandmother had dementia. My mother fought with her for nearly a year to go to an assisted living facility, because in her mind, she was just fine and could still take care of herself. My mother had to make some hard decisions for my grandmother's safety.
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My MIL has dementia, but hers affects her logic and reasoning, not her memory, for now. Fortunately she became too overwhelmed with driving and had stopped going out, so MH just took the car and keys. She is in an independent living facility, which provides meals, cleaning, etc. She also has to check in daily by 11 am or they check on her. We unplugged her stove/oven.
Mostly we just roll with her irrational ideas. It is hard, but she gets very worked up if we try to correct her too much.
He doesn't live alone, he is married. His wife and doctors feel he is ok to drive for now, but I know things can change. I know safety trumps everything but it isn't my call to make at this time and I have to trust his wife and doctors to know best. But sometimes things can change more quickly than expected and I would feel better with him chipped. I heard a story of a man who drove into a cave and died after getting lost. I don't want that to happen.
It isn't just driving that worries me. Dementia patients get lost walking in the neighborhood too. I am trying to think ahead a little ways. Don't beat me up here. For what it's worth, my dad has never driven Charlotte so it is not a decision I even have to ponder. Personally I wouldn't want him caring for her for his temper issues unrelated to dementia (though probably worse now). But I can't say how safe he is because I haven't seen him in months and haven't driven with him in years. Again, I defer to his doctors and wife on that. But I would still feel safer if he had a GPS device just in case.
Dementia is so hard. My mother passed away in November, but she had pretty severe dementia. Our case we were "fortunate" because hers manifested in a way where she didn't want to leave the house and eventually she didn't even want to leave her bedroom to the point where she'd try to barricade the door.
I know you can get bracelets or anklets that have gps in them. H's has a young cousin who has what her mom describes as a "low functioning" autism so she wears an anklet for safety in case she were to get separated.
Mostly I'm sorry that you find yourself in a situation where you need to think about this like this, I had the same fears that my mom would wander off. If you ever need someone to talk to feel free to pm me. My mom was diagnosed gen years ago so we lived with it for a long time.
My MIL has dementia, but hers affects her logic and reasoning, not her memory, for now. Fortunately she became too overwhelmed with driving and had stopped going out, so MH just took the car and keys. She is in an independent living facility, which provides meals, cleaning, etc. She also has to check in daily by 11 am or they check on her. We unplugged her stove/oven.
Mostly we just roll with her irrational ideas. It is hard, but she gets very worked up if we try to correct her too much.
LT because this is pretty much how my mom was and how we had to cope with the progression of the disease.
akafred - Totally understand. It's a tough situation. We struggled with my grandmother not doing what we and her doctor felt was best for over a year before she finally realized it would be better for her as well.
I would suggest something with contact info for his wife and a GPS. My grandfather also would get out of the house and in the street and strangers would find him. A bracelet is an easy identifier.
These also look decent, though they are targeted at kids: pocketfinder.com/
He doesn't live alone, he is married. His wife and doctors feel he is ok to drive for now, but I know things can change. I know safety trumps everything but it isn't my call to make at this time and I have to trust his wife and doctors to know best.
This. It's really difficult, though, to defer. I have to defer to my mom and sometimes she's unrealistic in her expectations and trends toward denial. There are a couple men married to women in my mom's dementia support group who have mild Alzheimers and other forms of dementia who are cleared by their neurologists to continue driving without incident. One of them did a driving reassessment with an OT at a local rehab center and passed, the other was OK'd based on a neuropsych and driver's re-test. My father has other issues so it's an easier call to make.
One thing you can do is look at his car. If he's nearing the end of his driving career, you might expect his car to have a lot of scrapes, dents and dings. We sold dad's car a week ago; the guy who bought it referred to the beat up body condition as the "result of senior driving".
But sometimes things can change more quickly than expected and I would feel better with him chipped. I heard a story of a man who drove into a cave and died after getting lost. I don't want that to happen.
Of course not. And sometimes someone can be sort of OK at one level for a while and then seemingly drop off a cliff. It's hard to know how things will progress.
It isn't just driving that worries me. Dementia patients get lost walking in the neighborhood too. I am trying to think ahead a little ways. Don't beat me up here. For what it's worth, my dad has never driven Charlotte so it is not a decision I even have to ponder.
I only mention it as a gut check. I didn't mean to attack you, sorry.
Personally I wouldn't want him caring for her for his temper issues unrelated to dementia (though probably worse now). But I can't say how safe he is because I haven't seen him in months and haven't driven with him in years. Again, I defer to his doctors and wife on that. But I would still feel safer if he had a GPS device just in case.
This would be my situation until recently. My dad spent the summers 4 hours south of me and the rest of the year another 900 miles south of there so I'd only see him occasionally. My mother has not been the most accurate of reporters as I have come to learn since I moved them back to my neck of the woods.
My dad doesn't go anywhere solo at this point; so we don't need GPS. But it's worth a discussion with him and his wife. Do you ever visit the doctor with them?
No, mrsbuttinski, he's very private about his health and Altzheimers. I talk to his wife regularly and she gives me the scoop. She did say she needs a respite week in a couple months so I may be caring for him before too long so she can go to her daughter's house across the country. But she suggested my brother would be better for the "man things." But him being private makes the whole thing harder, or more complicated. I don't know anything about his will, what his wife's expectations are, etc.
Good tip about the paint condition. I will pass that along as well as check the next time we visit.
No, mrsbuttinski , he's very private about his health and Altzheimers.
My father was as well. In fact, I would use the term secretive to describe my father's refusal to admit to the cognitive changes he knew he was experiencing. I have seen signs of personality changes and disorientation related to ALZ in my dad for at least 9 years and the amnesia and confabulation associated with the other for at least 5. My concerns, which I expressed, led to a deterioration of our already uneasy truce which led to many fights which caused me to limit my visits to see him.
The problem is, they needed help and they didn't get it until it became an emergency situation. They missed the opportunity to shelter assets should my father need long term nursing care which will not quite impoverish my mother. I had to move them during my dad's stint in rehab; making the decisions on selling 2 houses, renting them an apartment and buying their "forever home" as my mother laughingly calls it. This necessary timeline meant that my mother and dad denied themselves the option of participating in the process together.
Dementia is a family condition; it's not just the person with the dx who "has" dementia.
I talk to his wife regularly and she gives me the scoop.
This is hard. I generally hang out at the monthly ALZ caregiver support meeting with my mom because I get a lot out of it. (ALZ's website also has great message boards and even a 24/7 hotline answered by masters degree level staff- great resource)
I see a lot of tension when there's a step-mom/step-child situation. Not sure that's an issue here, but the group leader, who is also a MSW confirmed that this is the case. Often the wife is not a reliable reporter as a means of "protecting" the spouse; this is especially true if the marriage has been more traditional along gender roles. This can result in kids not having a sense of urgency (not you, I'm sure) and not helping. I suspect finances and jealousies play out for some given how expensive a condition this is with the assumption that there will be few assets left at the end of the day unless some well timed estate planning was done.
She did say she needs a respite week in a couple months so I may be caring for him before too long so she can go to her daughter's house across the country.
Respite suggests he can't be safe at home alone which brings up the whole gut-check around driving. If dad can't be safe managing meds, fixing meals, etc., he probably shouldn't drive.
This weirdly echos where I was last summer. I invited my mom up to visit for my niece's birthday something she previously would have jumped on. She declined vaguely saying she wasn't comfortable leaving dad alone for a couple days. I thought it odd; she'd traveled to Boston twice in the 6 months prior. I pressed for more information and was blown off.
Then my mother's sister died and mom asked me to drive her to Boston for the funeral. I reminded her of her reluctance to leave my dad alone (and offered to drive her to the airport and stay with dad) but she brushed it off saying a neighbor (my late sister's 2nd grade teacher who has known them 50 years) would check in. We went to the funeral and dad crashed and burned. The house was semi-trashed with blood everywhere. Dad was confused, delusional and hallucinating; I insisted we take him to a teaching hospital ER where he was admitted and later dxd.
TL;DR if your step-mom wants you to come be caregiver, she may have a sense that he's further along in his dementia than you know. She may be processing her new normal.
But she suggested my brother would be better for the "man things."
What are man things? Is this a euphemism for bathing and toileting? Or does she mean money stuff? She could hire a professional to come to the house for that sort of thing. She could also book a short respite stay at a nursing home's assisted living or memory care (depending on his level of impairment) setting. My plan B for dad, should my mother become too ill or burned out, is a local nursing home's respite program. The one where he did his initial rehab costs about $250/day.
But him being private makes the whole thing harder, or more complicated. I don't know anything about his will, what his wife's expectations are, etc.
Ugh. This is adds a layer of difficult to something that is already sad.
Depending on how impaired he is, perhaps you could bring up the topic with them both. Or at least with her if he's no longer up to it. If they haven't already seen an elder care attorney, they probably should. It may be too late to protect assets for your step-mom or have an estate for their children upon their deaths should he need skilled nursing care and not have the assets to pay for it. The ALZ site has current Medicaid information. Something like 80% of those with Alzheimers (one kind of dementia) died in a nursing facility. My aunt who has vascular dementia has been in a very nice place since 2010 at a cost of just over $14K a month.
If you father is still mentally competent, he should elect a POA for health care and everything else. This would probably be his wife with a child as the second agent in case his wife is unable to step up because of her own death or health issues. His wife should absolutely name POAs as well; one does not want a spouse with dementia making health or financial decisions on their behalf. (This was the very first thing I did when my dad was in the hospital- become my mom's POA in case she got sick- she nearly died last winter because she was too sick to care for herself and my dad was unable to advocate for her.
Good tip about the paint condition. I will pass that along as well as check the next time we visit.
Good luck, fred, I'm sorry you are dealing with this.
She has recently left him for a couple of days, she just doesn't want to leave him for a week or more. I have no idea what "man things" means; I would infer it is more of a hygiene thing or maybe she is saying he has an issue that needs attention. IDK; she was rushed (her sister was over) and I didn't get more.
I, too, saw signs for a long time before the dx. But some of those he has always done so it was hard to say. Like telling the same story multiple times; he has 4 kids and 3 siblings he speaks to regularly so he loses track of whom he has told. But when that story was repeated over and over again, it got me a little worried, esp in light of family history (his mom had ALZ). But when my sister and I arranged to meet at his house one Sat and each individually spoke with him, and I drove up and he bewilderedly asked what I was doing there, I became worried and spoke to his wife. He resisted seeing a doc for about 2 more years and then went and got the dx. It was still "mild" at that time. Not sure about today; guessing mild to moderate but IDK how they delineate the designations.
The money thing is ugly. Not for me because I don't expect to inherit or even really want to. If he gives every dime to his neighbor's cat, that is fine by me. And I love his wife. I find her to be very honest and up front. But that isn't the case for all my siblings. My oldest sister was furious when he remarried after my mom died, and she is, shall we say, money oriented by nature so while my first thought was that men who are married live longer and report happiness so I was happy that he found his wife, her first thought was about inheritance. Even though my dad had famously and repeatedly said not to expect to inherit anything. And I am pretty sure they were not that prudent when it came to prenups etc before they got married, but he didn't want to talk about it then and I am pretty sure no one has talked to him since. But since I don't care about the money (like, seriously, at all), I have a great relationship with his wife whereas my sister literally won't talk to her. My other sister had a falling out with him years ago so she never calls. And my brother doesn't bother much. Sigh. I will for sure let his wife know about ALZ respite programs. I suspect she just wants it to be a positive for him where a home health aid wouldn't be. If he can get his son to visit for a week then that makes her going away not too bad, but if he has some stranger come then that might technically work out or actually be better, but he won't like it and that might make future trips challenging. My dad is a very challenging man to start with. He is very tunnel vision about a lot of things.
My grandfather's first sign was repeating stories as well.
Along the lines of money, if this isn't something she's thought about and you're comfortable mentioning it, it wouldn't be a bad idea for his wife to talk with a financial adviser if she hasn't already. There are all kinds of potential issues with them having their accounts in his name. My mom worked with my grandmother and an adviser on their stuff and it was a little complicated. Ignore if this is something they've got handled or you don't want to bring it up.
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