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.
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.
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!
"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.
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.
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.
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
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.
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
Do you have any siblings?
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.
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.
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.
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.