Hello! My wife’s mother was officially diagnosed with dementia in July (Oct as of this post), but the drop off in her abilities has been drastic over the last year. A recent MRI showed vascular issues as well as shrinkage in the frontal lobe and the hippocampus. An EEG also revealed her brainwaves are much slower than they should be for her age (73). Her driving privileges were recently taken away, but she asserts that she is absolutely fine despite that and despite me handling all of her meds, finances, health needs, insurance and everything else. I’m her primary caregiver, and my family (wife, a newborn and a kindergartner) live in one unit of a townhouse while mom lives in the other unit. She is able to use her phone, but she comes to our unit at least a dozen times a day confused about something or needing an explanation or just to vent anger about something. She has a companion caregiver who comes by for a few hours a week for outings and help with errands, and while the reports back on how things go are positive, mom complains about doing them. My wife and I don’t have any concerns about her safety; she hasn’t fallen and doesn’t have any hygiene issues or problems feeding herself, but we are finding it harder and harder to care for her given that we have a newborn and a child doing kindergarten at home. Understandably our mom has completely lost sight of boundaries, and can’t remember discussions about finding a time to come by for help and gets mad when we try to talk about them. We want to help, but the reality is we can’t all the time, especially not with the needs of our kids right now. The thing that is confusing to us is how to get the help she needs. She isn’t a danger to herself, but do we need to look into a memory care facility for her? Do we need a live-in caregiver even though she might not need the constant care? We’re in a weird spot where we realize we can’t help as much as we want and as much as she needs, but she might not be in a place where a facility is appropriate. If anyone has any thoughts on where we are we’d love to hear ideas. And if I can clarify anything about the situation, more than happy to. Thanks!
My mother lives in a Memory Care ALF and isn't a 'danger' to herself, really. But she's SO confused all the time, she can't remember if she even went outside to sit on the patio. She needs help with lots of things, too, which she gets over there, along with other senior companionship and interaction that keeps her entertained. She can complain 24/7 about the other 'stupid morons' she has to deal with who are in much worse shape than SHE is............she loves to complain and she has plenty of company doing so!
I think a lot of people erroneously believe that a demented elder has to be either catatonic, eating Ajax or running down the street naked in order to be 'ready' for Memory Care, which isn't true. If your mother can't manage her life by herself at home, then she's ready for Memory Care Assisted Living. If you can't manage to care for her AND manage your own family's lives, then YOU are ready to have her placed as well.
Wishing you the best of luck!
The dryer issue you mention was very much like mom's nightly OCD that developed. We had a camera just inside the front door. Cameras in non-private areas can be illuminating! Started out a night here and there, a few iterations, and eventually became a nightly marathon - check the door lock and sidelights, something in the kitchen and then the LR. The camera didn't reach far enough, but I could count 7-8 seconds, light on, light off, then off to the LR, which showed up as light on and off, shining through the pass through to the kitchen. Later when OB was there, he identified the dishwasher. Never did figure out what she was checking in the LR - maybe the TV, although I think she had already stopped using it, maybe couldn't figure out the remote? Anyway, this became a 1-1.5 HOUR routine, EVERY night! I finally had to turn off the sound on my phone, as the software would ping us when the camera triggered, then send an email with a bit of the clip recorded. It only recorded about 15-20 seconds, so EVERY trip back and forth was setting this off! OB tried calling her. First time he tells her to go to bed, she says she was just going, but it took several more trips! Second time she said he got her out of bed, which wasn't true. The phone was just inside the kitchen, so the camera would see her answer, and she wasn't in night garments nor had she "finished" her nightly "rounds" yet! I told him to turn off the sound on his phone, calling her wasn't going to stop her, she had NO idea she was doing this and if he tried telling her she did, she wouldn't believe him!
The problem with saying "she doesn't wander", or "he doesn't do this", etc, is that there is a word missing from the statements - YET. There is no warning light. There's no crystal ball to know when something will go awry, even though they've NEVER done this before and wouldn't even THINK of doing it! Like I said, it is like having a growing baby - you don't know when they will first roll over, so leaving them on a bed or couch for "just a minute" could be a bad idea! They can't open the door and walk out, or open a cabinet with cleaning supplies, etc... Until they DO!
With babies/kids and dementia, you have to be one step ahead, ALL the time. The first time could be the last...
(had a little chuckle at this: "...dishwasher ( she accidentally locked it)". I wasn't aware you could lock dishwashers - just checked, mine doesn't and it's fairly new. Anyway, YB told me he had to go there to unlock her microwave. I was perplexed - locked? How? Turns out if you press/hold the stop/cancel for about 3 seconds, it locks the control panel! Repeat to unlock. My washer and dryer have these as well, and the stove has a control panel lock for the oven. I think the microwave "feature" has been around much longer, as I have a much older microwave kept as a spare and it has the lock feature.)
Anyway, spending a day, or many hours on different days may reveal things we don't know. Cameras are also good for "catching" behavior that might be concerning. As doc said to OP, being tested in the office, she can pull up her socks and do well, for that short duration. It's why many docs miss the signs - they see a patient for 10-15 min here and there.
Don't worry about the "typical" nursing home requirements, because memory care covers the gamut of issues. My mother is in a wheelchair, is incontinent, and nearly blind in addition to her dementia, so she's a classic nursing home patient. However, her place also has a 47-year-old man who seems mostly fine, seems to need no real care, but has either early onset Alzheimer's or a head injury that has made it impossible for his wife and two children under 10 to handle at home. There's also a retired neuroscientist who seems fine as well. He's told me all about his research, watches football, read a 600-page book I loaned him, and can dress and feed himself with no issues. He just can't live alone, that's all.
A good memory care place will separate the more functional people like your MIL from those who are low-functioning, non-verbal, or unable to really do much but stare off into the horizon. Don't choose one that doesn't do that. Look for one that has a lot of activities and doesn't just park everyone in front of the TV all day. Your MIL should be able to participate in things, but the staff should also be encouraging her to participate if she doesn't care to.
Look at several places, and they should be able to send someone to your MIL's house to assess whether she'd be a good fit for their place.
The alz.org website for Alzheimer's Association is a great asset, too. Dementia is a real learning experience for everyone.
My mother is not social, she prefers to remain in her apartment to read, eat and watch TV, at least she is safe. I am shocked with how rapidly she has mentally declined, but again she is as safe as can be. She can still shower, take care of her hair, getting dressed, etc. but now doesn’t want to “fool with it” every day. Some days she is very clear headed even though her short term memory has seriously declined.
What does this have to do with you? Take the time to find a place that works for YOU as well as your MIL. Hire a companion/care giver if you can while she is in her new place, it will be good for her and you.
DO NOT keep her in her current home, it screams danger-stairs, access to come and go out her front door and ways in which you never considered possible. Prior to my mother’s move she was unlocking the doors every night so the paramedics could get in if need be. I installed a realtor type lock with a door key inside and gave the code to Life Alert, she still unlocked the doors. I certainly never thought of that scenario.
One day she left the toaster oven on for hours, burning the countertop. She stopped eating anything other than ice cream, coke and chips, even heating food in the microwave was too much trouble.
These are the things you won’t likely see unless you live with her. If you place her, she will be much safer and that will translate into less stress for your immediate family.
Your MIL will not get better, it isn’t her fault but it will impact all of you. How rapidly she declines is not predictable.
Maybe there is an Atria owned facility in your area you can check into. Ask people you know if they’ve heard of any good facilities, a social worker from the hospital recommended a few when I was looking.
Good luck to you.
I wish you good luck. Your descriptions are so complete and I know that you do see what is coming. Mom is quite young and she may need long term care for some years. I think I would not waste her assets on 24/7 care in her home as it will eat through resources quickly unless those resources are pretty endless.
I am hoping your Mom's POA and paperwork for everything is all in order, for her dementia now would make a POA done now out of the question, and guardianship would be needed.
I sure wish you good luck. with a new baby you are clearly the meat in the middle of sandwich generation in terms of everyone needing you quite a lot.
It is time to begin the rather daunting search for a good facility for MIL where she can get care and attention she deserves and you and your wife can be just family when you visit rather than stressed out caregivers. Two major factors go into play in finding a facility: funding and care reputation. Funding: does MIL have enough funds to go into a facility of her choice as a private pay for 1-2 years? ALs generally do not take Medicaid and some of them require really large entry fees. Remember that Medicare is a health insurance and will not pay for custodial care even though the need for that care is due to a medical condition. Will she need to apply for Medicaid, which is largely federally funded but state administered? Each state is different but in NJ this can be a long trip so get ready for their 5 year look over her (and thereby your) financial shoulder: bank statements, social security statements (1099s) , birth, marriage, death, divorce certificates, mortgage statements..... you get the idea. If you are like most of us you have no idea where all this stuff is so start looking now.
My suggestion is visit each facility you really like 2-3 times, at least once with no announcement. Rough on the staff yes but you might get a more accurate picture of what life is really like there. And remember covid19 has put a damper on activities and reduced staff in even the most wonderful facilities. If you are visiting an AL with MC attached don't for a minute believe the statement "and she can age here with us and live the rest of her life with us." Get that one in writing because for the most part, it's not true. If MIL ever needs nursing care on a prolonged basis an AL even with MC, will probably not be able to keep her. ALs were created for people who only need an "assist with activities of daily living" and MC frequently just is an extension of that with more concentration on memory care activities. They don't have much staff that are trained in nursing so you ideally want to get a place that has a long term care /skilled nursing (LTC/SNF) section attached to it and you want a written quarantee in the contract that she will have a bed in that facility (medicaid or foundation paid) when her private pay runs out. Don't sign any contracts until you have your attorney review them.
When you visit facilities use your ears and nose as well as your eyes. Sniff the hallways - it should smell clean but not highly perfumed. Listen to the sounds of activities - how does the staff address the residents and what tone do they use? Is there a lot of interaction between staff and residents? And of course, wisely use your eyes. Don't be overly impressed with the chandelier or the baby grand piano in the lobby. You are paying for that chandelier and if Mom has not had one in 80 years, she doesn't need it now. And how many times does someone come to entertain the residents by playing the baby grand? Can residents who play use it?
Of course, check out the Medicare rating section but generally they only rate LTC/SNFs,
Good luck in your quest, keep us updated and let us know how we can help.
The best one I saw had a large, enclosed gas fireplace in the main lounge where residents like to gather. One resident was a retired fire chief so the staff appointed him to be responsible for turning it on and off each day.
Let me start by saying that every person's journey down the dementia path will be unique. Will they share some common symptoms and behaviors? Absolutely! While the link to ADLs is a good start, dementia is a very complex issue. Dementia is an umbrella over a number of different cognitive disorders. But, even when two people are Dxed with the same type of dementia, they will follow their own path. You have 2 children, one still a baby. Think of it like babies - each develops at their own pace. Some walk or talk early, some later. Some roll or sit up early, some later. There is NO timeline really. It's the same with dementia. Each will exhibit some or all of the "usual" symptoms and progress at their own rate, some faster than others.
Also, consider activities like self-care as long-term memories. Generally (it can be different for other forms of dementia) in the earlier stages there will be repetition, neediness sometimes, and losing higher level functions like bill paying/finances and following instructions (think cooking, using a remote or phone), or even being capable of understanding some dangers. Falls are not necessarily what you should be focused on, although preventing them is important. Self-care/hygeine have been long time activities, so like older memories, these are more likely to be lost later.
First inkling for my mother was repetition. She lived alone about 1.5 hrs from me, so it was primarily by phone I realized there was an issue. I knew nothing about dementia, but had to learn quickly! When I found she was having trouble with finances, I stepped in and took over (good that you got all the docs in place!) The car went at some point (also lucky for you doc was willing to report!) Since that required helping with groceries and other supplies, it became apparent she was no longer cooking. She would get into pickles by misplacing or not charging the portable extension. She managed to turn the ringer off on the wall phone (had to get a PD wellness check!) We tried bringing in aides, 1hr/day to increase if/when needed, but less than 2 months later she refused to let them in OR consider moving ANYWHERE, esp not to AL (which had been in her own plans prior to dementia!)
So, falls are not the primary concern unless she is/was unstable already. The stairs are a concern (I hated mom's stairs to the finished basement area!) While superficially things may seem okay, there may be lapses you aren't aware of because you don't live with her - closer than I was, but unless you can spend several days to observe, you really don't know what goes on!
The facility we moved mom to does an assessment of her capabilities and needs. This wasn't free - it was part of the commitment to move there, so you might not be able to ask for this at any place. When we hired the aides, the agency did send a nurse to do a GOOD dementia test, in her own place with us there. Medicare paid for it. She recommended a timed/locked pill dispenser and other suggestions. I'd inquire with the place already being used to see if they can do assessment and how much it would cost to have a daily companion (until you make the decision to move, she needs someone to keep her occupied, so she isn't interrupting your routines so much.) I wouldn't go live-in or 24/7. Start with a few hours/day and adjust as needed. You might need to go 6-8 hours, so she doesn't interfere with important daytime activities.
"...come to terms with the fact that she is only going to get worse..."
THAT is a fact! However, noting several times you mentioned she is progressing faster, has anyone suggested testing for UTI? UTIs do present oddly in elders, esp those with dementia. Mom's first after moving to MC led to extreme sun-downing. Subsequent ones have presented as night time bed wetting. ANY sudden or quick changes in demeanor or behavior should start with a test for UTI. Easy, inexpensive and can rule out UTI.
"...comes to our unit at least a dozen times a day confused about something or needing an explanation or just to vent anger about something."
Common simple everyday tasks for you and I can become a problem for them - they don't know where to begin. You clear up the confusion, provide explanation or listen to the anger, and it can all repeat 10 min later, a hour later, next day. Also, another post you made implies she's becoming socially isolated. My mother did this too (55+ condo community, she loved to go with others to Senior Center activities, but began to withdraw. Hearing loss contributed to that some.)
"...but she asserts that she is absolutely fine despite that and despite me handling all of her meds, finances, health needs, insurance and everything else."
My mother's mantra was "I'm fine, I'm independent and I can cook." Nope. Nope. Nope. Dementia LIES to them!!! In their minds, they are 20, 30, 40 yrs younger, hale, healthy, very capable.
"She is able to use her phone..." perhaps you think so, perhaps she can sometimes, but not all the time...
"My wife and I don’t have any concerns about her safety; she hasn’t fallen and doesn’t have any hygiene issues or problems feeding herself..."
Again, these are more long-term activities (bathing, eating), and last longer than other activities. My mother, 97, is still trying to feed herself, even after a stroke a few weeks ago, leaving her with rt side weakness and trying to do lefty! She also asks to be taken to the bathroom. She requires full care for everything else now.
"Understandably our mom has completely lost sight of boundaries, and can’t remember discussions about finding a time to come by for help and gets mad when we try to talk about them."
She hasn't lost sight of the boundaries, she doesn't remember them, just like not remembering the discussions about time. Another common symptom in dementia is anger when confronted. Anger confrontation, trying to explain, remind, argue, correct, whatever attempts are used to address the issues, they often become angry, argue, deny. Go with the flow. Agree when possible or change subject/focus.
"She isn’t a danger to herself..."
Not a danger that you are AWARE of. My mother wasn't a danger to herself (except for those stairs!), yet just before the planned more, she bruised her leg, and developed cellulitis, which could've killed her. She told her neighbor, who called me, otherwise we wouldn't have known, so even WITH the move to MC, it could've still killed her!
An assessment from someone qualified will determine whether AL or MC would be better. Moves are hard on those with dementia, so sometimes if they are on the cusp, the recommendation is MC. If you decide AL first, do find a place with a MC wing, which will make the move a little easier. Do check several places, ask questions, take notes, tour IF you can. Not all places are equal. Compare costs and what is included in the cost. Ask about activities.
"... she doesn’t yet display some of the classic issues that warrant moving to a facility, ie, falls or inability to bathe/use the bathroom."
Again, these are not necessarily the criteria for making the move. Our mother didn't have issues with either of these "classic" issues, but she wasn't safe to remain at home either.
It sounds like you are learning very fast & keeping your head. Well done.
Mother has suffered a health crises & quickly moved from independant to dependant. You flagged the big dangers: Falls & Fires. Another big one is FEAR. This can cause wandering (as mentioned) or the social/emotional need for constant company. (In my area a Grandfather went wandering with his new infant grandchild - Police involved - thank goodness no-one hurt).
An in-depth assesment by a trained Geriatrician or Psychologist can be of use when capacity or skill testing is required as the answers will correlate directly into quite detailed real life skills.
Whether this is useful for you now... as you have already seen a drastic drop in skills & already already know the dx vascular issues...
With vascular dementia, it progresses in a 'step-down' way - each TIA/stoke causing further damage.
It is possible that Mother's symptoms may remain stable for a time. So she may still be able to be managed at home, maybe with increased regular aides & attending a daytime memory care program.
But I think it is very wise to be researching & preparing.
When Mother's care needs become too great for the home environment, the options will be 24/7 aides or residential care (either Assisted Living or Memory Care).
She may be at the cusp or there already.
Besides the early stage, it's really not feasible for a person with dementia to live alone. The brain damage changes so many things about the way they think and their reasoning is greatly decreased. That's why they can do things that you would not expect, like, wander away from home, leave a stove on, eat nonfood items, mistake medication, soil their clothes, not bath, etc. They are also prone to depression, anxiety, delusions, hallucinations and sleep disorders. My LO used to call me a lot. I couldn't figure out why, until it was clear that she was afraid. She would tell me that things in her mind were changing....she felt like she was dreaming and was scared. She needed me to reassure her. That's one reason people with dementia want to be near loved ones. They need reassurance and comfort.
There may also be lots of repeating. Over and over. It can be challenging. Have you read much about dementia? I might check out the book, The 36 Hour Day.
You could get a professional person to assess your MIL to see what her current needs are. It's important that the get the true picture of how well your MIL is functioning. Even though, she's next door, have you actually stayed in the apt with her continuously for 24 hours? I'd do that so you can see just how she's functioning. I'd observe how she's really doing.
I'd keep in mind that most people with dementia progress and the level of care that one may get in a regular AL may not be enough. Memory Care may be needed. If you are looking at facilities, I'd ask about that. If you're thinking about hiring some help. I'd ask if they have experience with people who have dementia. That's important. Also, since she knows you are next door, it may be a big job to keep her from coming over when she wants to for any caregiver who is staying with her.
It's smart to plan ahead. I hope you find the answers you need.
Need to add that you might want to make sure your MIL has signed DPOA, HCPOA and Advanced Medical Directives. These are helpful in managing her care and financial affairs. If she hasn't signed them, I'd consult with an attorney immediately to see if she is still able to do it.
Read about these a bit. They are useful to medical professionals when deciding what level of care is needed.
Here is an Aging Care article that can help. It explains who can do the assessment and even includes an assessment checklist. Also google the terms to read a bit more but this is a good article to get started.
https://www.agingcare.com/articles/activities-of-daily-living-why-this-measure-matters-186853.htm
A couple of things you mentioned in your post to consider.
A new baby in the house taking your attention might be a source of anxiety to MIL.
Also this “can’t remember discussions about finding a time to come by for help and gets mad when we try to talk about them.”
You are absolutely correct, she can’t remember and such discussions will only lead to more upset. Watch some Teepa Snow videos on YouTube. You can learn techniques to redirect MIL and help her transition from her problem of the moment to another train of thought.
Also try to check out the book “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. It might influence your thoughts on facilities. Another book that is often recommended is “The 36 Hour Day” by Mace and Rabins.
Edit: Sorry just noticed the last book had been recommended already.
And yes, it is perfectly condition appropriate for her to get mad and frustrated at discussions about arranging times to help. Both my wife and I know that part of her brain is gone and not coming back. It’s more of a point that given our own limitations and the needs of our kids, that disruption is doing everyone harm: MIL isn’t getting care and attention she needs and then our children aren’t getting what they need from their parents. We don’t take any of her behaviors personally. It’s mostly that her condition has transitioned to the point where she is completely unaware of boundaries, which again isn’t something we’re mad at her about, but it was an interesting indicator to us that we need to reassess the things we see that warrant getting MIL additional care.