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.
Second, Mom needs to be put into pull ups. You will need to be with her when she goes to the bathroom. She is no longer able to do what needs to be done. I suggest getting Huggie baby wipes to help with cleanup.
Third, Mom can't be left alone. If she can afford it, find an Assisted living. If she can't then file for Medicaid and find a nice Nursin Home. Daycare would be an option at this point until you get your ducks in a row.
Fourth, this is not going to get better. Mom has Dementia or Alzheimer's and with your responsibilities, you can't have her living with you. Your children and husband are ur priority. The time you have needs to be spent on them.
JoAnn is right - your mom either needs assisted living, a nursing home, or memory care. It just depends on her overall ability with the activities of daily living (ADLs) and her ability to do for herself. Is she able to ambulate around? Can she carry on any kind of conversation? Also, make sure she doesn't have a urinary tract infection (UTI) as those can mimic dementia in seniors.
Don't feel bad - just imagine what your mom was doing when she lived on her own. You've rescued her and will now make sure she's safe and well-cared for. So you're absolutely doing the right thing and just in time for your mom.
Keep us posted, as we all learn from each other. I'm sure you'll also get more good advice. You've found a place with a lot of knowledge about caregiving.
"Showtiming." WOW. What a revelation! Thank you for sharing that terminology with me. I googled and, as you can probably imagine, got one heck of an education.
To answer your questions:
Is she able to ambulate around? Yes, but not well. She has had a bulging disc in her back for a number of years that she refuses to have treated because she's afraid of surgery. Because of this she lives with pain radiating down her legs from her spine and deals with it by minimizing how much walking she does (which as you can imagine has done no favors to her physical health). She uses a cane (sometimes, though she should use it all time) and we have a wheelchair for her for trips to the mall, etc. In addition, she has COPD so walking tends to make her very winded.
Can she carry on any sort of conversation? She'll talk your ear off if you let her about things that happened decades ago (before I was even born oftentimes), but as for her understanding of anything that you say back to her, her hearing has absolutely declined. Regardless, even when you speak up loudly her responses to whatever you've said aren't always appropriate. Example: On Saturday I told her that I was going to be gone for an hour but my husband would be home if she needed anything. Her response was, "Who's here?" On Easter we had family over. Mom was sitting next to me while we were talking about a new garden bed we're planning to install in our front yard. My cousin replied, "Boy, you'll have your work cut out for you with that project." Mom got VERY angry for seemingly no reason and stomped off to her room. Later she told me that she didn't appreciate us talking about her that way. She clearly was not following the conversation about A GARDEN not HER. Today,I must've told her every 5 minutes beginning at 2:45 that my daughter would be getting home on the late bus at 3:30. But every five minutes she'd be increasingly agitated asking me "Where is she? Why isn't she home yet?"
I did have on epiphany today, though. She was asking questions and voicing concerns about how we're managing her money. I sat down and as simply as I could explained our plan, even writing it down on paper. We've gone over this multiple times but it hasn't sunk in yet. She got very upset and started in on what a disappoint it was to her when I moved to the city years ago and how she thought I'd help manage her finances and make decisions after my father died (in 1999) but I was no help at all (I was in college at the time). This happens often. I try to talk about something in the present and she dredges up the past. Well, today it finally dawned on me that maybe that's all she can do. She remembers (though not accurately) the past. Comprehending the present is the real challenge.
Today she was also very angry with me for not being able to reminiscence with her about her deceased brother, Max, because he was such a great guy and so good to me when I was a kid. Truth is, Max died at least 10 years before I was born. She also talked about my Uncle Ralph as if he was alive and he died in 2003 just after I got married.
Call your local Area Agency on Aging; tell them that you have an elder living with you who needs a Needs Assessment, stat!
Does mom have a new local doctor?
Find a geriatrics specialist and get an appointment as soon as you can. Have her medical records from her previous doctor sent.
If you have a HIPAA release from your mom (and I would ask her to sign one right away so that you can have discussions with all of her doctors), send it to the old doctor and set up a phone call to discuss mom's "previous level of functioning" since you are worried about her "sudden steep decline". You tell previous doc that you are trying to figure out if this is a sudden onset, acute problem (maybe caused by a UTI or stroke) or simply a gradual worsening of her previously seen condition.
Urinary Tract Infections in the elderly can cause sudden decline and psychiatric and behavioral issues. When something is suddenly off, think UTI. Get a culture, not just a dipstick.
Elderly women, in general, get poor medical care. It requires a good geriatrician, vigilance by some one banging on the gates and attentiveness to changing symptoms. Find a great doctor who doesn't dismiss your concerns.
I went to see my doc yesterday and said that I was tired all the time; I'm 64 and I said, I think it's probably just that I'm getting old. "Nope, we gotta figure this out" was his reply. He reviewed my meds and wants to change my allergy meds; sleep study and screening for depression. Also PT for my constant knee pain. THAT's the kind of doc you want for your mom, one who investigates.
At the same time, you want a good workup for dementia, which may be best done by a geriatric psych or ger. neuro. If you get to a place of "the best treatment is comfort" then you stop trying to put out the fires and you figure out how to get her the best quality of life without lots of tests and poking. (((((hugs))))
I'd keep in mind that trying to convince her of things, explain, make clear, or reason probably won't work. If it is dementia, the brain just can't process things properly anymore. I learned to bring my LO comfort by being super positive and not dealing with details and plans, because she just couldn't remember, process or retain the info. So, a lot of "I've taken care of everything and it's all be resolved." It depends on her level of progression, but, if she disagrees with you, you won't likely change her mind. Reasoning may just not get through. My LO could read, but, not comprehend what the writing said, so writing things down was pointless.
Also, there are some great videos on You tube by Teepa Snow on dealing with dementia behavior, (if that turns out what this is).
Atty can tell you from what he sees if you need to go for guardianship.
It does not matter if mom does not want to see a doc. Don't ask, just make the appt and get her seen. Go back with her, and take a letter with her symptoms. My mthr had no records, but she was taken care of. GO, *after* the DPOA and Health POA signing.
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.
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.
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.
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.
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!
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. :)
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'.