My mom had me VERY late in life. She's almost 90 while I'm in my early 40s, married, with a young family. She just moved in with us a week and a half ago & we're struggling very unexpectedly. She was living on the other side of the state & we wanted her closer because we felt that at her age it was only a matter of time before things began to decline. Truth is, we've been trying to get her to move out here for years, but she didn't want to leave her friends and her home. Since daily calls gave us the impression that she had a full social life and was active with daily chores and errands, we didn't push the issue until very recently. Now she's here & reality is very, very different. Getting her to shower is a battle. I've gotten her into the shower once in 9 days and it was because my husband put his foot down and told her she had no choice (she stunk of fecal matter at the time). Showing her the shower set up it became clear almost instantly that she's not capable of showering on her own, not even with a shower chair and grab bars. When I got her clothes off it also became clear that it had been a long time since her last shower. Then there's her bathroom hygiene (or severe lack thereof). In the past week we've had at least 3-4 occasions where I've found fecal matter smeared all over the toilet, the floor, the bath mats and even all over the sink. She had to have had it all over hands and when asked she told me that she has to pull the fecal matter out of her because it gets stuck. We started her on MiraLax. That got rid of the constipation but she's still smearing fecal matter all over the place, so now I'm in a constant state of trying to disinfect anything she touches. I've found wadded up toilet paper that smells like fecal matter in the bathroom trash. As for our kids, they found the last mess in the bathroom and now they (9 year olds) are grossed out and upset that grandma is "putting poop" all over our only bathroom. Mom doesn't dress unless asked to do so. She doesn't put her teeth in unless I insist (and boy does she get angry when I make this request). She hasn't inquired about or made any attempt with respect to food or meal times. If you put food in front of her, she'll pick at it and eat some of it. But otherwise, the only food source she has an interest in are Carnation instant beverages. She hasn't opened the fridge once in 9 days! She's unable to remember information that we tell her. The other day she was surprised when I told her it was time to head to the car, even though I'd given her reminders all morning that we were going out. I was heading back into the house after getting our daughter on the bus one morning and mom absolutely freaked out that my daughter wasn't with me. She thought I had lost our daughter. It wasn't until I showed her a clock that she understood that our daughter had just left for school. She'll randomly wander into the kitchen and announce that she's heading out to get our daughter off the bus (at 10 in the morning and after multiple reminders that she is NOT EVER getting our daughter on/off the bus or babysitting). Honestly, we weren't prepared for this. She always seemed lucid and everything seemed logical when I spoke with her on the phone long distance. Looking back, I suspect all those social activities and errands she'd tell me about probably didn't happen (I can't imagine how they could have). I work full time, as does my husband. We both travel for business (he'll be away the next 3 weeks in a row) and we have kids in elementary school with all the typical school and extracurricular activities you can expect with 9 year olds. We thought we were taking on an elderly mom that needed more of our support, sure. But this is much bigger than that and despite my limited knowledge on the topic, dementia keeps coming to mind. Does that seem like a fair assessment? Her doctor has not ever said a word to me about any cognitive issues at all so I'm really feeling blind-sided. What should our next steps be? I feel so stupid for being so clueless but I really, truly thought she was relatively self-sufficient and of sound mind until about 9 days ago when she moved in. She's also so angry and uncooperative. She's never been an easy person and I've always treaded lightly around her. But she won't even talk to me if I bring up so much as a home health aide.
Guilt tends to drive us in the beginning. I used to run everything by my Mom to “get her on-board” so to speak. Now 3yrs in... I can tell you its like beating your head against the wall. My Mom’s Dr just recently told her- she wld be healthier in an environment suited for her needs (Skilled Nursing) I hv stopped trying to appease her. We have help with sitters now - even tho she said She wld Not let them in her house.
Please get help, you do not need her approval. And tour skilled nursing facilities in your area as I am. Our families are important too.
Good luck.
Like you, I thought everything was fine with my 89 year old mother when we'd chat on the phone. I later learned that in early dementia, the person can do small talk or chit-chat well because they don't have to remember anything.
At that time I lived in Puerto Vallarta, Mexico and she lived in Northern California. We moved to Tijuana in 2013 and I went up to SF for a Christmas visit with mom. I found out MY MOTHER HAD DEMENTIA!
Oh my goodness, where did THAT come from?
A week's vacation got scaled back to 3 days so I could get back to Southern California and find a place for her.
She was well enough to move into a senior semi-assisted apartment. Meals, light housekeeping and transportation was included.
Unfortunately, even with the dementia drug Aricept, her Alzheimer's continued at a fast pace, advancing 2 stages in a year and a half. I took over all responsibility for whatever she needed.
She became confused, would hide things and accuse people of stealing, she'd go down to breakfast at 3 am and she quit bathing. I had to "steal" the checks and credit card because she wrote a check to the hairdresser at the apartment complex for $800.!!! Thankfully she returned it.
We had to place her in a memory care facility. We tried bringing her home but she was unmanageable. She'd take off her diaper and urinate on the floor, hit us, spit at us and keep us awake all night.
She's happier where she is and we're happy with her care at the MC.
PLEASE do yourself and your family a favor and place her wherever she can go. These are unsanitary conditions for your family and could be traumatic to your kids.
I'm so sorry this happened and I sure sympathize with being "blindsided".
Scout, My brother lived w/ my mom, so my sister & I thought he would alert us if she was ill. Wrong. My sister got a call at work recently from one of Mom's neighbors saying that she'd found Mom wandering outside lost. Thankfully, they took Mom home and found my sister's info. We had not been made aware of her dementia, incontinence, etc. until my sister arrived at her home, where there was overflowing trash & roaches. She was quickly put in Rehab and moved into Assisted Care last wknd. The whole thing was a total shock because, like you, we thought she was doing okay.
I agree w/ everyone who advise to put your Mom in Assisted Living. I admit I cried a lot last wknd. I'm the youngest and I was born yrs after my parents thought they were done. It was just me and Mom for a long time. BUT it is the right thing for all of us. She can get the attention she needs and we can have the peace of mind. Don't feel guilty.
First and foremost, big hugs and kudos to you for taking on what you had no idea was a very difficult situation with your mom.
It sounds like you have a good doctor for your mom, and that's wonderful - a doctor that listens to your concerns, considers them and makes them part of the treatment plan is a fantastic asset to have on your team as you tackle your mom's current and future needs.
I can't offer much more advice than has already been given on the topic of handling things with your mom, but what I will offer is this: start writing.
If you value your mom's memories of her childhood, her family that passed away before you were born, information she has about relatives that you may not know or places she lived that you don't know about....start writing when she starts talking about them. That is the one regret I have about my parents being gone. Mom was a huge storyteller - she loved to tell us stories about where she lived as a child, her mother, her father, adventures she had while she and Dad were dating or a young couple, her love of the Great Lakes, etc - and no one ever wrote them down. When I moved in as her caregiver, I tried to get her to tell me about her memories, and all I would get most of the time is a line or two written down, and then she'd go blank. The dementia was advancing so rapidly that she was already losing those memories. I never got to write down the stories she told us, and now there are many that I can't even remember myself. They're lost.
Also, if there are relatives that you don't know, or never met, see if she has photo albums and can help you identify those people. That's one way to possibly keep her busy for a while and spend some bonding time with her (if you want to do that). Write the names on sticky notes or tape flags and put them with the photos in the album for future reference. Again- I tried to do this with Mom, and she passed away before we got through all the photos - so there are vintage photos of people that none of us recognize and there's no one to ask who they are now.
I know with all the other responsibilities you have right now, writing seems like a silly thing to do, but just keep a notepad handy somewhere that you can jot things down, if you're at all interested in keeping them for the future. (If your relationship with your mom is such that you don't want to do this, I certainly understand - but as I said, it's the one regret I have - that I didn't write these things down, and when I tried to get the info from her, it was too late.)
If you could, it would be best to have your mother go to a nursing home and you can visit her often. I say this because when you take care of someone who has so many issues and is uncooperative you can easily become overwhelmed and you and your family will suffer. You also don't want to become resentful and angry at your mother. I wish I had put my parents in a nursing home because it is so hard to deal with their issues on a day-to-day basis and also tend to my marriage.
Do your research, read about dementia, go to the Department of Aging in your community and check for resources, talk to your mother's doctor--get as much information as you can, and of course, come to this site to ask questions from people in the trenches. I wish you much luck in your quest to help your mother and your family.
You said-
"The doctor has asked us to observe, document and send a weekly summary so that she can begin evaluating things. I'm just surprised that I've basically diagnosed her before the physician did. But like I said, I'm not well-schooled in this disease so what do I really know?"
Many people, including PCPs, are clueless. The early stages can be difficult to see or understand. What some may think are just lapses in memory or judgement could be those early signs, and if you don't see them or are not aware of what they mean, those clues can be easily missed. Those who see/interact more with a person ARE going to be the ones who know something is off. Our mom herself knew she was forgetting things, but just chalked it up to "I'm old, I am allowed to forget some things." Sure mom, but what you do not know is how much you're forgetting!! I did not say that to her as it would not have been well received. As for doctor - how often would mom have seen her? Even when mom sees doc, how long is that visit? It is very easy for many early dementia patients to present themselves as 'normal' for short periods of time, and a doctor visit or brief phone calls are not enough to see the true problem. Neither of my brothers saw the issues; although I do not consider myself 'close' to mom, I did talk with her more often on the phone, and assisted sometimes with groceries, so I saw/heard those early warning signs. That is when I started looking up dementia and symptoms. The non-local brother called every Sunday, but those conversations were not long enough for him to notice the issues until much later. Brothers took way longer to get on board despite me providing information, both her behaviors and what I learned about dementia (even now younger brother doesn't get it all!)
I am somewhat surprised that she exhibits these bathroom issues (showering, toileting) since moving in with you, but there was no evidence at her place when you picked her up from there? Yes, moving someone who has dementia can upset their "routine", but this seems rather extreme.
As for what to do:
Start looking for/at places, in particular those that have MC units. These often have long waiting lists, especially the "better" places. With only one bathroom, I do not see keeping her at home as viable for long, UNLESS a home health aide can keep the messes to a minimum.
Despite mom not wanting to discuss home health aide, she is not the one to make decisions now. You do NEED someone to assist AND someone to be there when you cannot be there.
Read up on dementia as much as you can (in your *spare* time!)
Since you indicate you already have DPOA, that part is covered - if she brings up finances, fluff her off with something. You do need to determine what her finances are, including after the sale of the home, to determine how much care can be covered. We put the bulk of mom's savings into a trust to protect it from her and scams, so that we have enough to pay for MC (sale of condo, which is also now in the trust, is TBD, but once done, assets will be added to that trust.) If your mother qualifies for Medicaid (income and asset based), apply asap. It takes time to process. Also, be aware that not all AL/MC places accept Medicaid (those queries should be done when checking out places for her.) Additionally, in order to process a change of address to ensure tax documents arrive (these CANNOT be forwarded, at least not any federal ones), you should consider applying to be representative payee for SS. I recommend calling a local office rather than the 800 main number, you'll get much quicker response. If you have the incompetence documentation in hand, this should be easy enough. It requires an appointment to apply and after approval, setting up a special account - they will give you all the details.
Do NOT try to discuss details of anything (financial or otherwise) as it will not work! This is part of getting yourself educated - we have to learn how to make little white lies, how to redirect focus, how to distract. If she wants to talk about anything, even the past, just go along with whatever she says. You cannot reason with or argue your way to anything. Our mother typically clammed up if you tried to correct her on some detail (she thought my daughter was some cousin from the past.) Also, if she accuses you of things or berates you or lays on guilt or complaints, you have to learn how to let those things slide. YOU know what you are doing for her, she lives in a different reality. Either ignore or fluff it off somehow. DO NOT feel guilty about ANYTHING you have to do!! It is typical for the care-givers to take the brunt of any/all negative behaviors.
Someone else suggested FMLA - if your own finances can support this, it is an option to consider while working on getting everything "arranged." It guarantees your job and allows you up to 12 weeks, but that is without pay. If your boss is supportive, find out how many days you can work from home until some resolution is found. This would ensure continuing income, but allow you to monitor mom when no one else is available.
Hopefully you can get this all worked out, sooner rather than later. Although brothers balked at the cost of MC, no one took mom in (I could not for many reasons, including that I cannot physically care for her) - I did not object, but one brother is younger and still has to work (no one home to watch mom, so it will still cost!) and the other is not local (he is of retirement age, but keeps finding employment for more income, so same problem, in addition to being 2 days away, so we cannot help him in any way.) It definitely was NOT safe to leave her in her condo alone.
Definately get a neuro-psyche referral and evaluation. As far as dealing with the daily behaviors, I've yet to find a resource with ideas for "how to convince them to _________" with the blank being, bathe, get dressed, eat, go for a walk... or be civil. It's more than a handful. Best wishes to you in finding a solution before it 'gets ugly'.
I have cared for several types of dementia patients. Unfortunately, dementia runs in both sides of my family. :( A case worker is a fabulous idea!!! Depending on where you live there are GREAT alternatives to nursing home care. Here in Tennessee, it is preferred by the government NOT to put them in a nursing home because it's cheaper on medicaid to have in home care for your mom than having nursing home care. In some states there is a program called Choices. DCHS can help you navigate through that. Remember when answering the questions about your mom, you need to answer them as how she is on her WORST day...not her best. Some of the questions they ask are absurd! Like...can she feed herself. Well YES she can, but she won't...so the answer is no...IF the case manager will take that answer. One case worker we had said "can she pick food up from the table and put it in her mouth?" I said yes, but if she has no food she can't do that and she can't fix it herself. She said, "that's not what I asked". I was furious! So be conscious of how you answer the questions. If they offer this in your state, you can get approved for up to 40 hours of in home care. You can go through a service or you can do what is called "consumer direction" which is what I did where I hired the person myself, so she would have the same individual every day. With services, they rotate people and even though they PROMISE you that they will send the same person every day, I went through four different services, all promising the same thing and not a single one of them followed through. Dementia patients need routine. Routine is so very very important...as is consistency. I went the consumer direction route so that I could choose her caregiver and be "the boss" so I knew everything was getting done for my mom the way I'd have it done.
Kudos to you! It's a hard journey for sure and if they have to go into a nursing home, they have to, just make things as comfortable as possible. You have two small kiddos. You don't want to look back and wonder where those precious years went with them. I made that mistake and I'll forever regret it. You do what you have to do for your own sanity. Everyone is different. :)
If you are in the US, the above link might help you find a care manager. Interview at least three, a good personality fit is important! Ask how they get paid. I was more comfortable with an independent contractor than with someone who was paid by the facilities and services we were guided to use. There were more hours the first two months but now that things are more settled, the costs are low...some months, nothing! But when our LO needed an emergency hospitalization, she was able to coordinate discharge, home care...there's a million rules to follow and she took care of it all. The social worker at your local hospital might be able to give you good recommendations too. Best of luck!
1. I brought her to an Urgent Care facility today because I hadn't planned to switch out her physician until her final annual exam scheduled for next month (we're in the process of selling her house so we were going to have to make a trip back to my hometown anyway). Anyway, boy what an adventure Urgent Care was with mom. I followed the advice I'd seen and just didn't get into the details. "Mom, we need to run an errand. Time to get dressed." Then once we were there in the exam room & she started to freak out a little bit I told her "this test is for your exam with Dr. K next month." She calmed down immediately and the good news (I guess) is that there is no indication of infection, though they are running a few lab tests just to be sure and we'll know tomorrow.
2. Durable POA....I already have that (thank God). We did all that paperwork at the end of 2017. She had complained about how much she hates paying bills/managing her checkbook and I offered to take over her finances for her. She jumped at the chance so we had all the legal loopholes tied up with our estate attorney. I have full control of her finances, I'm her Health Care Proxy and my husband is back up for all of it.
3. I talked with her (current) physician today. She's encouraged me to get a case manager hired asap. As another poster also pointed out, it'll be a bit of money but I'll have a professional helping us to set up home care, etc. Doc also told me to take a deep breath. My instincts are probably right but it hasn't even been a full 2 weeks yet. Her advice is to get home care so it's not all on our shoulders, get a case manager pulled in to help us navigate all the services available, document our observations and keep feeding them to her (current) doctor, and hopefully if we can keep things stable just a bit longer the doctor will add some cognitive tests to mom's annual exam next month so that when we transfer her to a doctor out here where we live, they'll have current data to work with. The doctor told me there's a lot of poking and prodding involved in this next exam and as long as I'm willing to make the drive out to hometown with mom, she'll probably cope better going through all that with a medical person she knows. Then we'll let the new doctor take it from there.
So that's where we are for today.
Secondly, I'd keep my responses short and to-the-point. If I put in too much detail, she lost the thread of the conversation. My brother would call her on Sundays and she couldn't remember anything he said by the end of the conversation, I think because he was speaking normally with lots of verbs and adjectives and descriptors. She couldn't keep up with any of that. So, simplify, simplify, simplify!
And really get in her face and speak loudly. I would get SO annoyed with medical professionals who wouldn't speak up, even when it was clear mom couldn't hear. I'd repeat everything loudly so she could hear and they STILL wouldn't speak up. GRRRRR. Sometimes I'd get the giggles because it was so ridiculous. We were all speaking English, but I'd still have to "translate" for the doctors and nurses because they wouldn't speak LOUDLY enough for mom to hear them. And I'd write things down and mom still couldn't remember. Or couldn't find the note I wrote. Or forgot to look at it. But that's just par for the course with someone with cognitive decline. You learn to deal with it in a variety of ways.
I'm sorry it's all come as such a horrible shock, but maybe set yourself a timescale for keeping the situation under review - a month, six weeks, three months, something like that - and considering other options. There's no shame in having not known what you couldn't possibly have known.
I definitely second all the advice of getting a complete medical workup from specialists (not just GP), getting paperwork (POA, etc) in order, and getting help from experts. And until you figure things out consider hiring help in your home to give you and hubby a break, so you can last for the long haul.
For instance: we found that our Mom's dementia is one of the few that is actually treatable (as the result of getting a complete workup), we used a social worker to find an assisted living place for Mom, and she found a great match. She is actually payed by the AL's so it didn't even cost anything. For my MIL we used the counting aging specialist to help her get qualified for Medicaid, which was huge for her.
Good luck, and keep us posted.