My 92 year old mom is very independent and believes she is completely taking care of herself. She doesn’t need help with ADLs. She lives in my house with my DH and me. She does have all her meals made for her and housekeeping done for her (all by me). She is quite frequently upset about something and yells or is upset toward me, no one else. I am an only child.
I check up on her during the day to make sure she didn’t leave the water running, the refrigerator open, items a safe distance around the space heater, heat lamps left on, the toaster left on, etc. These things don’t happen all the time, but enough to make me concerned. She can carry on a normal conversation with someone if required, but prefers not to socially interact with anyone. She stays in her room most of the time. She does walk, mostly with a walking stick.
I believe all this time in her room is contributing to her mental decline. She doesn’t have dementia symptoms, but will bring up things from the past that are upsetting and then bring them up again and again. Other things she is forgetful about, and I’m not sure about her mental state. I think she is trying as hard as possible, but probably very confused and frustrated about what is going on with her.
She will not go to the doctors for anything.
I need to go out and do errands, but am concerned about her in my home. I need to have a discussion with her about her decline and how I am concerned. But know how this will go...she will become very upset with me and not talk to me, tell me to leave, get away from me as much as possible, be very disappointed in me, tell me how can I treat her that way, and blame this on me somehow.
So, do you tell them that they are starting to mentally decline and you are concerned? If so, how is this best approached?
Or do you just continue to minimize all the hazards in the home and go from there?
They can also let you know what services are available to you and your mom. Whether or not you choose to use any of these services, you will know they exist and under what circumstances you will have the ability to request them.
I would tell your mom that the Agency on Aging is coming to assess her. When she objects, let her know that you need the information to make good decisions for you and your husband, that you need to look ahead for your own futures. Just have a few non confrontational replies ready and move ahead with your plans.
Also I would suggest you check out Teepa Snow on YouTube. She is a master at dealing with dementia patients. Watch her interaction and see if some of the things she discusses reminds you of your mom.
Also look her up on this site. She will teach you how to redirect your mom’s resistance to your prompts.
If you serve her meals in her room, I would stop that so that she interfaces with others during meal time. If that’s too much to bear for you and husband then make it once a day instead of three meals a day.
And yes, she will probably use her cane on any cameras that blink at her. So place them where she isn’t looking at them when she’s seated or lying in bed. She’ll probably forget about them if she isn’t looking at them.
Let us know how things go. We learn from one another’s experience.
I would suggest that you state your reasons why the person (that you are caregiving for) needs some supervision, especially when you are out running errands. I would stick with your guns and not cave in to her. It's hard but I know that you can do it. (You may want to take her into the doctor and have him or her tell what is going with her and why she needs supervision)
You may want to ask someone that you are close to maybe, come over for a visit when you are going to run errands or something like that. That person will also need to be firm with her when she tells them to go away or something like that. But hopefully, she won't notice and won't be a problem to the person visiting or to you.
I am sorry that you are going through, I do hope that things get better for you and for her.
If she clutters around a space heater, it's just not safe. You might need a window unit ac w/heater so you can get rid of all the heating elements. Anyone can forget to close a refrig or turn a toaster oven off - I've done it several times myself - however it could also be an indicator of mental decline. Remove the toaster oven and tell her it broke. Get a regular toaster than turns off when the toast pops up. Minimize any hazards you can for everyone's safety.
Even if she doesn't really like to socialize, you said she will do it if someone is there. See if you can get others to visit more often to keep her engaged. If she has no friends or family to visit, then take her to a doctor (just tell her that Medicare requires an annual check up) and ask the doctor to order some in home physical therapy to help her keep moving and limbs strong. It will get a person in the home a few times a week that she can talk with.
It's possible both of you have gotten in a routine that became comfortable - you are out in main area of house doing your thing with her not really in your way and her up in her room living out each day. More interaction may help her.
"Although the early signs vary, common early symptoms of dementia include:
*memory problems, particularly remembering recent events.
*increasing confusion.
*reduced concentration.
*personality or behavior changes.
*apathy and withdrawal or depression.
*loss of ability to do everyday tasks."
'A bit of advice I was recently told was “to wait for the next thing to happen,” but while I’m waiting, I also want to be planning.'
Unfortunately waiting for the next "thing" to happen could be very bad! Checking out ALs now is great, but meanwhile... Cameras and aides to monitor when you are not there or when she goes for a walk should be seriously considered. You have removed some safety issues (space heaters, etc.) - consider others that might be needed.
If/when you hire someone to watch over her/walk with her, pass it off as help for YOU not her. When our mother was still in her condo, but in early dementia stages, we brought in aides, for checking on her and that she took her meds from a locked dispenser. Initially she was told it was doctor ordered and paid by Medicare (she refused any personal help, so no Medicare coverage, but she didn't need to know she was paying!) We were lucky that the company minimum was only 1 hour - check her and meds, didn't care what else they do, but it only lasted a few months and she refused to let them in. In your case, it is your house, so you can hire someone and ask them to do some random simple "busy" tasks for you, but primarily to have eyes on mom!
Does she go for walks on a regular basis, such as same time of day? If so, the aide could be hired for that time and just say 'Oh, a walk sounds like a great idea, mind if I join you for some fresh air?' Use that time to tackle outside errands.
"They asked her about setting up a Medicare physical and she said she wanted no part of that."
FYI - Medicare covers an annual "Wellness" but does not pay for a "real" physical. To understand the differences, see:
https://www.alz.org/media/documents/factsheet-medicare-annual-wellness-visit-2017.pdf
IF she also has a supplemental plan (such as a Medicare Advantage plan) a physical may be covered w/wout copy. My plan includes a "free" home health visit, but I don't need it and had to ask them to stop calling/mailing me about it! If she has such a plan, someone can come to the home to do the Wellness exam. Suggesting Medicare requires it might help get her to the doc. It can't hurt to try.
Cameras: there are Nanny Cams that can be set up and not really be visible - I would install these when she isn't there to see them and not tell her. Common areas are best and can enlighten you about things you don't see! Our mother lived alone, and at some point began a nightly OCD routine checking the door lock, sidelights, dishwasher and LR. This started with a few iterations and became a nightly marathon, 1-1.5 hours over and over! The early stages can include "show-timing", so many can appear to be somewhat normal, but given enough time this falls apart. She stays in her room a lot, so might be good to have one there too.
It is good that you have been limiting access to safety issues. Although she doesn't use oven/stove now, could she? If it's a newer model, there should be a control lock. My washer, dryer and stove have these control locks. Removing knobs works too. Microwaves have LONG had these controls - if you hold the Stop/Cancel button about 3 seconds, you can lock/unlock the control panel. These are useful!
As with growing babies, you have to stay one step ahead! Plan/learn now!
"I realize I am in control if any changes are to me made to the current situation."
Are all the medical directives and POAs in place? Even with POA, moving her could still be a problem. Many think this gives you complete power, but it doesn't (been there, done that - EC atty said we could NOT force her to move. it required some trickery to get her to move as she was refusing any move.) Medical POA gives you ability to discuss her medical treatments and have access and make some decisions. Durable POA gives you the ability to manage finances, sign paperwork and make some decisions (based on what she would have done if capable.) It does not give you power over her life in general. That has to be worked out as best you can.
If no POAs, etc, consult with EC atty is advised! Typically many will give you an initial consult (~30-60m) free. They are not cheap, but often well worth the cost! Have all questions/concerns written down and take notes. Ask about costs, visit several who offer the free consult and compare cost as well as how their "plans" meet your concerns.
Either continue to minimize all the hazards you can or consider some form of assisted living for her.
Trying to tell someone about mental decline will not be received well at all.
When she becomes argumentative and trys to get you to leave, you can( very nicely) remind her that this is YOUR home! When she starts her independence speed, remind her
( very nicely) that you are the one that cooks her meals etc. At that age stubbornness comes into play because they don't want to give up their independence but aren't realizing they are dependent. Good luck and stand your ground. YOU are the caregiver
Seems your mom is wedded to her routines and gets upset when her routine is changed. Research shows that social isolation tends to lead to more decline, but socialization for a person with dementia needs to be part of their routine.
Seems your mom probably has some dementia, but you need to have her evaluated by a doctor so together you can map out "best care" plans for her. Alzheimer's can be treated by medications for a time. Depression and anxiety can also be treated. You also neglect to mention whether your mom has any chronic medical problems... other than needing a cane to walk. A doctor should check her for those types of illnesses as well.
I don’t feel doctor appointments are negotiable. You need to know her medical situation since you are her caregiver. Make the appointment for her. Tell her that you expect her to keep the appointment. Don’t give her a choice in postponing or a cancellation of the appointment. Tell her it is a mandatory requirement.
She is living with you, not the other way around. Ask for her to sign a medical release to get information because if you don’t HIPPA laws will prevent your attainment of any medical information. She needs a complete physical.
If she blatantly refuses to cooperate then start looking at assisted living facilities or nursing homes. Life is too short to live in misery.
I am sorry you have this difficult and stressful situation. Best wishes to you and your family.
Many people are shocked at the cost of facilities. Are you aware of what they cost (now)?
If your mother could be Medicaid-eligible, it would be a good idea to consult an elder care attorney now to see what to do now to ensure Medicaid eligibility when the time comes to place her in LTC.
I spoke with a senior care advisor a few months back about options, costs, and possible ways for care to be paid for. Yes, it is very expensive. Consulting an elder care attorney would be a good idea. Thank you.
I have also talked with my DH about having a sitter come in while I get out. This would be two-fold as mentioned in the responses. Safety and more socialization for her.
I do like the suggestions on getting her involved in planning for the changes that will be coming. Thank you for the advice. Is she logical? Hmm...sometimes she can be, but other triggers put her in an emotional reactive realm. So talking to her is iffy. She can also hit the reactive emotions when anything comes up that she doesn’t want to deal with.
A day socialization program would be great for her, and I have suggested this several times, but she is NOT interested. Thank you for all the suggestions of things she may be interested in doing. We will try it out. She does walk as much as she can for exercise and gets mental stimulation through crossword puzzles, library books (need to look into movies - good idea), educational dvds, and she loves to watch Jeopardy, Wheel of Fortune and some sports.
When she first moved here, I got her to go (literally kicking and screaming) to the doctor to set up a meet and greet new patient visit. They asked her about setting up a Medicare physical and she said she wanted no part of that. But to tell her that is is required by Medicare may work!
The camera idea is interesting, although she wouldn’t like anyone watching anything she did, she would take her walking stick and knock them down. I guess they would be good to see what she is doing that could be changed for more of her safety.
I have been eliminating or changing her access to most of the safety concerns, as these are serious concerns. She doesn’t use the stove or oven at all.
I feel like we’re stuck right now, she’s not quite able to live independently, but not ready for assisted living. I realize I am in control if any changes are to me made to the current situation. I will be checking out assisted living places for when the time comes or it is no longer doable at home.
So yes, look in your area to find facilities where you would be comfortable placing her. Assisted living and memory care facilities don’t accept Medicaid but if they have various levels of care, then some have Medicaid beds. This is important as she may run out of money during her care.
how long she stays with you depends in part on how long you can stand it.
You need to think ahead about how you want your home to be run if she continues to live with you, so be prepared put your foot down or else be miserable, as things are only going to get worse from here on out.
If you can make sufficient changes to your your home environment that is comfortable for you in the short term, do that now and reinforce as time goes on, but begin to prepare yourself for the eventuality that your Mom is going need more assistance in the future, beyond that you can do for her, so begin researching Assisted Living places, preferably ones that have step up facilities as her symptoms worsen, think memory care.
You can do a lot of research right here on this site by reading how others have managed, and then begin touring Assisted living places to get a feel for the best possible place for her. If you think that adult daycare might work to give her the safety and stimulation, plus give you the opportunity for some space, you may be able to prolong the inevitable, but don't be caught unaware, do your homework.
These are difficult decisions that need to be made, and it's Easy for me to say, as we did everything wrong from the start (13 years in our home), lol! But we did learn eventually and did finally get my FIL into Assisted living, unfortunately he became gravely ill after only 12 weeks and he ended up in hospital with pneumonia and lung cancer, so we brought him back home on Hospice care where he died 9 weeks later. Please don't wait like we did, your family, your marriage and retirement are worth so much more than trying to appease someone who doesn't appreciate what you are doing for them, and of course their safety should also come first. Good Luck!
Is there an active Senior Center?
Both might do her a world of good just by getting out and socializing with others.
I would also disconnect any appliance she might tend to leave on. Any that shut off would be fine. Like a toaster instead of a toaster oven. An electric water kettle rather than one you use on the stove top.
I would be very concerned about space heaters and heat lamps. Is there another way to adjust the temperature in her room?
Your other option is to have someone come in. And it sounds like it is getting to the point where she should not be left alone anyway. This would have to be a deal breaker point. Either she allows someone to come in when necessary or you will find an Assisted Living facility to move her into. I think given the choice of the two she may relent and "allow" someone in if she knows you are serious.
A point on your last question...
You minimize all the hazards in the home AND you have someone come in AND you get prepared for the fact that your home might not be the safest, easiest place for her.
I don't know if she is up for a convo about this stuff. It might be a little beyond this point where you can have a rational discussion about her decline. I would skip it, cuz I'm totally into avoidance at this point with my mom. Probably bad advice because of my bias.
Anyhow, protect yourselves however you need to. Dementia proof your house - take the knobs off the stove, put the toaster away, etc.
I like the camera idea so you can monitor things but what if she's doing something dangerous and you're across town doing errands? I think she needs a babysitter. Senior center of adult day care might be worthwhile. Or someone to sit with her so you can go out with more peace of mind.
Tough situation, this elder care. Ugh. Not easy. Or fun.
When she brings up bad memories, step in and quickly change the subject. Find a way to get her to some degree of socialization. Paid home companion twice a week for four hours got my mom started in the right direction and gave her a reason to get out of bed in the morning. We also did drop off adult day care for 1/2 day once a week. At the time the other clients were at different stages, but I explained that to her and said that she should enjoy what ever events they had (little bus rides in the countryside, music, crafts, whatever).
It's like you go 100% and nothing seems to work, but later you realize it is a process and the 2% that works has the effect of socializing for her and respite for you.
The day I told my mom that we were placing her in memory care I felt the words were going to catch in my throat and choke me, but she actually listened and shook her head in agreement(!) The next day, of course, when we came to pick her up she had no memory of our earlier conversation. But I held on to that brief moment when she shook her head in agreement and it gave me the strength to move forward.
There are so many reasons why Mom is like this. Depression could be one. Elderly don't deal with change well. A good physical could answer a lot of questions. Her potassium levels could be low. Her Thyroid could be the problem. Diabetes, anything. Or, she can be showing signs of Dementia. Tell her Medicare requires a physical. But you can't solve anything until you find out what is wrong.
My mom blew up at me a few days before Christmas over this very topic and then refused to speak to me. I imagine on their end it's fear and denial. I get that. But at the same time I do NOT get how our parents feel entitled to dismiss our very valid concerns. I mean it's not like we aren't affected. Your mother lives with you. Mine is next door to me in my condo. We are affected daily! We are OWED some cooperation, and I am to the point of really feeling resentful about it.
After the last blow up before Christmas I decided I'm not going to try and force conversations with my mom, but at the same time I'm not going to sugarcoat things for her benefit either. That's all I know to do for now.
Have you considered getting a nanny cam or two set up in your home? That way you could watch her remotely from your phone (if you have a smart phone like an iPhone). Lots of people use these and they work well. You could tell your mom you are doing it because you are concerned. If she pouts, she pouts. The bottom line is you need to leave sometimes and you are tired of worrying about her being home alone. Tell her the cameras are necessary for YOU. For your mental peace of mind. That may get her to realize some things, or maybe not, but at least you can leave the house and still check on things so your not worried. BTW many of the cams also have audio. I know this because I have one I got for my dogs a few years ago. I could actually talk to them from my phone and they would hear it coming from the camera. In that instance the whole things was pretty funny, but in the sense of watching a senior it could be very useful.
I haven't done camera's with my mom because she would have a fit and disable it. My goals might also be different than yours because when my mom can no longer live alone safely I'm not going to try and keep her there. Nope. That's when she goes to assisted living, or in her case it will likely be memory care.
Good luck.
You must get her to a dr! You must! Until you get an idea of her decline you’ll spin wheels.
You didn't answer any questions back then about her going to live in a facility. What about it? Your H is retiring sometime this year, and what is life going to be like at your home with your mother once that happens?
She's been living with you since last February. What happened to where she used to be living. Was it a house that was sold/needs to be sold? Or did she rent. What is her financial situation?
What is the plan for when her dementia gets worse?
Yes, she should be seen by a doctor, no question. The decline you are seeing could be many things only a doctor can evaluate that. How to get her there? Everyone needs to see a doctor, at least once in awhile. Doc can identify problems that she doesnt even know are there. Then treat them.