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My mom is 101 and physically healthy as a horse. However, she does have some type of Dementia. She can't remember what I say two minutes ago and sometimes gets somewhat delusional - last night we took a walk and she met a lady with a dog and stopped to chat. Then we kept walking. When we turned around to go back, the woman was behind us with her dog. My mother insisted there were two ladies with a dog.
I live with her roughly 5 days a week in this great senior independent living place. They also have assisted living and skilled nursing facilities. For the independent living, she has a pendant she can press and help comes immediately. There's a nurse available and help when she might need it. She gets a menu each night and the next day orders her choice of dinner. They deliver it the next day and check on her. I am alone. I need to go home on the weekends for my sanity, to collect mail, see my friends or go to a doctor's appointment. She is extremely functional. She cooks her own breakfast, makes her own lunch and is on the computer and takes a walk with her walker. It is her memory and these types of delusions that scare me (another example; she insists one of the ladies nearby has played tricks on her and moved something on her porch.) She sometimes forgets I tell her I'm going back to NY even if I leave notes around.
We toured the assisted living quarters and she hates them. She loves her apartment. I tell her I won't always be able to leave her alone and if she won't go into assisted living I'll have to hire someone. She says she won't let them in. I know at some point I will have to insist. (Although I need a flexible schedule and all the agencies require a set schedule.)
She misses me terribly when I first go back home and says she wishes she would just die. Then after a day, she will say she's fine and not to worry. "Stay Longer". Her memory is getting worse but she's still very functional.
I'm scared of leaving her but I feel so far she's safe. Should I feel guilty? Should I not leave her? (I would go nuts) Finding someone to be with her occasionally is proving to be very difficult because she resists it and because they require a set schedule.
Thanks for your suggestions.

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At 101 years old and suffering from dementia, even just 'a bit', your mother needs Assisted Living. She should not be living alone at all; she can burn the place down quite easily by forgetting she left the stove on! There's an AL attached to the IL she lives in, so your answer is quite simple. Trust me when I tell you she will not 'die' if she moves into a small apartment in the AL........she's just using manipulation tactics on you which are working quite nicely so far, in reality. Plus, once she moves into AL, that leaves YOU with a free head (and conscience) to go about your OWN life as you see fit w/o wondering and worrying that she's wandering off or mixing ammonia together with bleach to clean up the mess she made in the bathroom and asphyxiating herself in the process. Dementia is VERY tricky and she can seem fine right now, and in another world 10 minutes from now. By you asking us if you should 'feel guilty', you know in your heart what the right answer is here. Just b/c mom is resisting the move doesn't mean it shouldn't happen.

"So far she's safe"..........tomorrow she can wind up very UNSAFE and that's the exact problem with dementia. AL is not a 'punishment' or some sort of house of horrors, either. It's a nice apartment, just like IL, with help available as needed (and no stove to burn the place down with). If your mother is going to 'resist' help inside her place, then she will wind up with no other alternative than to move into AL. At 101, she's lived independently a whole lot longer than 99% of the rest of the elders in the world! Put it to her that way.

Good luck making the right decision for your mom here.
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Peacefulness Sep 2021
This is an excellent answer!
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What does ‘safe’ really mean for someone who is aged 101? Is an accidental death worse than forcing her to move or to accept ‘supervision’ she doesn’t want? Difficult question!
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How long have you been been spending most of your time living with her in her IL apartment while maintaining your own home and life? Based on my own experience with my mom (who is not 101) and what you have said perhaps part of the issue is that you are making her more reliant on YOU. As long as you are the one physically there 5 days a week she isn’t going to accept anything else. You are already feeling more and more tied to staying there, more and more necessary but you haven’t reached that place where it makes sense to you to simply move in permanently, DON’T.

As someone else asked; What are you worried about when you go home? Are these things that can be mitigated without your physical presence? At 101 I’m not sure, personally, that I would make any big changes unless she poses a danger to others. That said the only thing I saw about the AL (assisted living) option on that same campus was that she “hates them” so I’m not sure just how different it is or if the benefit out weighs the turmoil of insisting on the change and the move itself with her objecting or if you can bring her around to accepting it once you have.

If the answer is that she doesn’t pose a safety risk and the separations of you going home are a big part of what makes it hard maybe there are things you can do to ease that. For us monitoring my mom with a camera over her medicine table (she takes many important ones) and an automatic dispenser along with several now Amazon Echos so we can drop in and she can see us not just talk on the phone has worked very well. No my mom is not a wandering risk and she is very steady so while there is the risk of falls for anybody she doesn’t have a higher risk. She needs reminders and urging along with BS (blood sugar) and medication monitoring but this also serves to have someone “visiting” often enough she gets tired of us sometimes, well our prodding and insistence, lol. Anyway she has become so accustomed to it that she often forgets we aren’t actually physically in the room and that’s nice. Perhaps adding one of these Echos or something like it in the room she uses most together with someone (other than you) that actually drops in once a day or once every other day, you may need to work up to this, could enable her to stay where she is.

Since she is already in a place that offers various step ups of care, AL, SL (skilled living) that’s where I would start. Do they offer a daily check in service other than meal delivery, if you don’t want her using the stove do they deliver breakfast and lunch or is there another method to accomplish this so she doesn’t have to cook, see what they offer and what services they know of for residents in the stage your mother is in or do they suggest AL? Presumably they have the knowledge and experience to help guide you here or at least add useful inputs.

It doesn’t sound like she needs nursing type or even ADL support, rather she needs daily chore help and maybe some meal prep along with personal interaction. I would look for someone else to do her laundry and grocery shopping so you don’t have to go each week and see her virtually instead, this way you get to visit and be in each other’s lives as much and whenever you both choose (she can drop in on you too if you choose), let her rely on someone else for the “chores”. You may end up with something in between and that’s fine, still a lot of time and work even from afar but moving you away from putting your life on hold and toward incorporating caring for your mom into your life rather than letting it take over your life, which is very easy to do.

Your mom is in IL so it should be safe to leave her there and go home for a month, if it isn’t “safe” then it’s time for her to step up to AL, it is not time for you to give up your independent life and move in. I imagine that was all part of the consideration when choosing this senior living campus. Needing help and your guilt are not necessarily the same as safety, hers or others IMO
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Seems that your mom truly needs assisted living since she can not live independently. You are the only reason she is not in assisted living. Most seniors hate the idea of losing independence, so she hates the idea of assisted living. It might help to have her "visit" assisted living activities during the day so you can "take care of important work that she can't come with to." When she can attend assisted living every day during the daytime, then you can make arrangements for her to stay there as a resident. When she is in assisted living, visit her as often as you can and take her out for "day trips". The goal is to have her care needs met consistently and for you to have your needs met consistently.
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Your Mom really does need an AL. Dementia is just too unpredictable. The decision to move her will need to be made sooner or later. I would not leave her alone unless you can be sure someone will be checking on her regularly.
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okilloran Sep 2021
You are so right! My dad, 96, just moved into AL. Nice little apartment, but he misses his friends, says nobody likes to talk to him, etc. Doesn't like the food, or the fact that he has to sign out every time we go to lunch or to a family event. The facility is not the greatest at facilitating socialization, so he has started sleeping a LOT. We get the TV straightened out for him, and we discover that he is having issues operating the remote now. So, TV doesn't work, he no longer reads...so he goes to bed. Or goes down hall, looking for people to talk to, and comes back, disappointed. Not at all what I thought it would be like. I have just hired a younger man (50ish?)- history buff - as a lunch and outing companion. Today is their first day doing lunch alone.

You are so right about skills being present one day, and lost or morphed the next. It's baffling. Thankfully, we live literally two blocks away and can stop in every day, We are going out of town this weekend, and I'm so nervous about it (but we have to go put his house on the market this weekend).

Sigh.
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You need some relief although it sounds as though, except for a bit of dementia and forgetfulness, she's doing pretty well so stop feeling guilty. She manages breakfast and lunch, has dinner brought to her, can stay entertained on the computer and with tv, and has help available if she calls. How does she do with taking her meds? and what about housekeeping? And are you afraid she'll wander and get lost on her walks? She wouldn't get a whole lot more help in assisted living except that they'd check on her more frequently, deal with medications, laundry and housekeeping. You need more than just a weekend off duty so can you arrange through the same facility to have just a little more "supervision" each day? My dad is in assisted living but in addition to the regular meds, meals, etc I've arranged a person to come each day at 4 pm to stay just an hour doing light-housekeeping, trash removal, make the bed, etc and make certain he gets to the dining room for dinner. He didn't like it at first but it's just an hour and he's gotten used to it and I like knowing that there is an extra set of eyes on him. If you are afraid of her wandering away, or getting lost then you'd need to look at memory care but if you feel secure that she won't wander away then I imagine you can get a bit of extra help without moving to an entirely new apartment. If you have the person EVERY DAY, even when you are there with your mom it will help with scheduling and will make it seem very natural to your mother that this person comes once a day and you can take more than just a weekend to have your own life.
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TakeFoxAway Sep 2021
Good idea of having the person there every day for an hour so she gets used to it. Many agencies have 2 or 3 hour minimums though. But I hadn't thought of this. Thanks.

She would not wander off. I know that. Housekeeping comes every Thursday and I do her laundry and shopping. She makes tea every day at 3 and is better at turning the stove off than I am. She is a creature of habit and routine and that helps a lot. She makes her bed every morning too.

So far she's good with her meds (she's hardly on any). And I check them every other day or so.

The facility doesn't have someone that could stay for an hour. The nurse would come by and check on her. I would have to go through an agency or find someone independent.

Glad this is working for your dad!
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Look at the age and the physical and mental conditions - forget if they come and go - they exist, they are here and are not going to go away. You have two choices: YOU must take full control and make all decisions even if she does not cooperate or else YOU will be tied to her l00% for the rest of her days and you will never have a life or anything close to it. So what if she does not want care when you are not there - you set the rules and make sure they are followed. If not, then she gets placed. Simple as that. You cannot reason or deal with people like this - YOU have to take full control and the sooner the better - for the sake of peace for both of you.
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At first my parents in independent living on a senior campus were adamant about not having strangers in their home.

We started first with a housekeeper and then gradually added help part time.
An agency was used and then through our church found private sitters who worked out very well.

Dad passed and now mom, 85, adores her sitters and would never give them up.

You need more of your life to enjoy. Start with baby steps. Your mom will complain but she may grow to love the attention from a "friend".

This will take a huge stress load off your shoulders.
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I think you already know the answer since she sometimes forgets that you told her you were gone. Get some home help and have them start coming a couple days a week while you're home. That way she knows them and it's not a total stranger showing up on a day you'll be leaving, or just before.

Based on what you've said, she should not be alone when you go out of town. And since there is money to afford you weekends off, use it. Yes, she might resist, but use the money to avoid your own burnout. So many on this site don't have that luxury.
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A hard choice: Dignity of Risk vs Duty of Care.

Getting older will happen in either location - so can falls, accidents & illness. Living comes with risks!
The big questions is would the stress of moving be acceptable? Would the pros outweigh the cons?

So on one hand gains of moving should include more supervision & safety (= reduction in fall/accident risk) but less autonomy & less familiarity in her environment (= increase to fall/accident risk).

So the simple choice of A. Mom stays or B. Mom moves is not simple at all.

When you weigh up the known risks (physical, mental, emotional) which is more 'acceptable' to you & your Mom (based on both your values & wishes)?

PS I was gung-ho to get one of my rellos into a more supervised setting but have swung around to accepting that she has chosen to stay alone. The dilemma is knowing if she can fully understand the risks... But I have no legal authority, so have done what I can to advise. I have known others to choose home alone at all costs until their dire end but also folk who chose to move as they saw it as the 'sensible' thing to do.

Basically in your case, if you went home permanently, your Mom would HAVE to move into Memory Care or a SNF. So it depends mostly on how much you can do & for how long.

Hiring weekend care seems a great compromise - best of luck finding a good fit.
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