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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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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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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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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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If you have to ask, you already know the answer. She isn't safe alone. She will forget one day to turn off the stove, or forget who or where she is and wander off. It will not only endanger her safety, but the safety of others.

We tried this with my aunt, who for her entire life had been vibrant and fiercely independent. It ended badly, but could have been much worse. After her second horrible fall, where she didn't press her necklace (either she forgot what it was for, or didn't want us to know she fell), leaving the stove on, and waking in the middle of the night and turning the heat to 95 in the summer, my cousin made other arrangements for her living. She went into LTC Memory Care. She seems to be happy there, and they are good to her. Safety is of primary importance.
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I would strongly look at what Bidon what's to do for seniors in understructure bill. Listed below. Most of his understructure is pork bell projects. their are a few good projects that I hope will help our poor seniors and homeles people. listed below.

The American Jobs Plan, which Democrats hope to pass through a narrowly divided Congress this year, assigns $400 billion for care for the elderly and those with disabilities through Medicaid. The funding would pay for the care of those individuals by visiting staff, allowing people to move out of long-term facilities and back into their homes. Biden promoted those aspects of his proposed legislation during a rollout speech Wednesday in Pittsburgh.
“It’s going to extend access to quality, affordable home or community-based care,” Biden said, while also touting the bill’s funding for roads, bridges and airports. “Think of expanded vital services like programs for seniors, or think of homecare workers going into homes of seniors and people with disabilities, cooking meals, helping them get around their homes, and helping
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Is your mom safe in her Independent Living apartment?
Would you leave her alone in an apartment or house NOT in IL?
If the answer to that is no then she probably is not safe in IL.
How different are the apartments in the AL portion of the campus/grounds? If the apartments are pretty much the same I would begin transition to one of the Assisted Living apartments.

(I have to add, I do not see the use of monitors that a person has to press to activate to get help if they have dementia. They are NOT going to know what the button is, what it is for or when and why they have to push it. Maybe in early stages it is fine but mid or later stages I think they are a waste and a false sense of security)

There the staff can monitor her and if and when she needs to transition to Memory Care that move will be easier for her.
The idea of moving to Independent Living or Assisted Living is that a family member or hired caregiver will NOT have to live with the person.
If you are basically living with mom why pay the high fees of IL or AL and move mom in with you. You can collect rent and mom can hire caregivers if they are needed.
I have to ask...what are you doing FOR her when you are living there with her?
If you are doing or helping her with ANY ADL's or if you are ordering her meals for her, that is enabling her to remain where she is even though she needs more help.
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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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How long have you been living with your mother 5 days/week in her IL apt? How far away do you live?

Do you have any siblings?
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She sounds like she's doing amazingly well. And caregivers need to take breaks! Try to get help if needed, so that she can stay in independent living as long as possible. Her days will be much more structured in assisted living, and she may not like it. If she is showing signs of dementia you have to keep a close watch to make sure she's not wandering, losing important things, forgetting to take her medications, not eating, or handling money irrationally, handling the stove improperly, etc. - things that will be dangerous to herself and others. Are you taking care of her financial affairs at this point? While her mind is still good, make sure all of her paperwork is in order: powers of attorney for medical and financial affairs, and financial institutions (banks, credit card companies, etc.) also have their own POA forms. If she has credit cards, ask them to make you a second person on her account and they'll send you a card with your name on it. It's probably best to have only one credit card. If she has assets she needs a will, and she also needs a living will with her medical directives. The POA should be on file with Medicare and Social Security to be able to speak on her behalf. They are very strict about this. If she's doing any of the above things, it really might be time to get an aide for her. Is there a social worker at the senior residence that you can discuss this with? Maybe they can make special arrangements for the nurse to make sure she takes her meds, etc. if you are seeing that there is a problem. The residence may be able to recommend aides in the area, but everyone is saying it's hard to get staff these days. If needed, maybe the aide can be part time just on the days that you are not there.
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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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You moved her, obviously, at some point from her home to the IL situation she's in now. And you moved in with her. And she has 24/7 care available at the drop of a hat--

I'd say your mom is receiving better hands on care than 90% of the seniors 'in need.'

WHY did you move in with her when she has so much help and you have a life of your own? I mean--not to be rude, but she's 101. Everyday she wakes up is a tiny miracle. What are YOU going to do when she passes--you don't mention your age, but you could very likely be in your late 70's.

If you are fulfilled by taking this on, then continue. If you're feeling burned out, make the changes that will facilitate more hands on care for mom and some time out for 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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TakeFoxAway: Imho, this is your own decision should you decide to leave her; HOWEVER, it goes without saying that your mother is at a very advanced age.
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In a way, this is a side issue, but I am curious about something. Why are IL and AL kitchens equipped with ranges/cooktops that do not shut themselves off? I am not observant, but several of our ranges/cooktops have had "sabbath" settings to automatically turn off the oven or cooktop burners after a programmed period of time. This capability is readily available when ordering new appliances. I never specifically looked for the feature but it has come with several ranges in the past. I admit those were not the cheapest choices, but as I get older I sort of wonder if maybe I should look for the feature next time I am replacing. In AL and IL I would think it would be a no-brainer to use appliances with auto-shutoff features. Many here have commented on the fear that a forgotten burner will burn the place down. I do forget from time to time but the worst that has ever happened is a waste of electricity and, in the case of an oven left on all night, a very warm kitchen.
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Guilt is a wasted emotion. You are doing more than your share and you also need a life. You are fortunate she is still so functional. Don’t be so hard on yourself. It sounds like she is thriving in the environment she is in. Best wishes to you. Take care of yourself too. If you get sick or die you are no help to her. ❤️
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She may not remember what button is for or that she’s even wearing one. The automatic fall detector doesn’t always work. I went to work one day in 2015 & came home to my mother on floor. Stupid me asked…”Why didn’t you press your button?” Her answer; “What button?” You should have someone stay with her while you are not there, Hugs 🤗
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When my mom was still independent, we had tracking on her phone and she also agreed to allow an Echo Show to be placed in her living room. I had the ability to “drop in” on the device if needed. And I promised her I would never do so unless we had genuine concerns. It worked out very well. I was able to video chat with her daily.

But eventually the day came when she appeared to be home (phone tracking) but wasn’t answering any calls. After a few hours, I dropped in on her Echo Show. The living room was empty and the house seemed quiet.

I began shouting out through the device. I eventually heard a small voice in the background. My husband jumped in the car and ran over while I stayed on the device. He found my mother on the floor of her bathroom - she had fallen and was lying in urine and vomit.

He got her changed while I ran over. We got her to the ER.

At this point, it was the end of mom’s independent living. She refused to live with us (we’re “boring” 😅) and now resides happily in AL. She has fallen multiple times at this point. We added cameras in her room there so that we can assist in monitoring her well-being.
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How about respite care in the assisted living part of your Mother’s facility on those days you must be away? Perhaps she may adjust to it and that may be a future option if/when you fully want to go back home.
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