Happy New Year, everyone. I hope everyone had a great holiday.
I am writing because I'm noticing some behaviors by my mom and I'm not sure how to handle them. Prior to her leaving her nursing facility to come live with me, a CNA showed me pictures of takeout boxes (from restaurants my mom had been to with me in the past) that were being kept under her bed for many weeks.
In short, I had to step out recently to pick up groceries from several stores. I usually drop in on my mom our Amazon Echo Show, however, only the audio was working so I could not see her this time. When I got home she had heated up food in the kitchen and brought/ate it in her room which is something we agreed she would never do - no food or drink items are allowed outside of the kitchen. The paper plates and what have you were in the bedroom trash can, but my mom cannot use one of her arms/hand so of course there was food in the carpet I 'just' got cleaned as well. The whole reason I noticed this is because when I first walked into the room I saw what looked like a crushed up piece of candy in the carpet at the floor of her bed that wasn't there earlier.
My mom and I discussed (at length) and have a written 'agreement' together that she would not eat or drink in the bedroom... ever. A few months ago I found her stuffing hard candy in her bra to eat later in her bed at night. This most recent time however, I admit I was infuriated by the food eating in her bedroom and it resulted in a bit of an argument. I am being triggered because 2 days ago I spent over 3 hours cleaning up a triple urinary incontinence + fecal incontinence + vomit incident in her bed and I honestly just can't take having to add 'seeking out hidden food locations and additional carpet cleaning efforts' to my never ending list of caregiver responsibilities at this time.
Not to mention I'm also triggered by how she 'kept house' when I was a child... in short let's just say we ended up with a big 'pest infestation' that thankfully my grandparents stepped in to pay for resolving. Lastly, we live in a home that is owned by my best and closest friend and she has my word that I'd keep it clean so it is starting to worry me I won't be able to if my mom starts the 'food hiding' which I 100% believe after this most recent incident has already begun.
When I ask her why she is now not following the rules/agreement we have (that we discuss very often) she says it's 'because she had a stroke' and 'it's not like she started any fires'. Seems very rational though that she waited until I left to bring dinner into her bedroom. (?)
Anywho, at the end of the day I know I can't allow my 'triggers' to direct my actions, so I am seeking advice here on what to do. I actually took away her TV/phone privileges for 24 hours in an effort to 'discipline', but now I am thinking that was a wrong move? From what I am reading it seems all efforts need to be based solely on my own behavior modification (i.e., what should I have done/what do I need to do going forward to prevent a meal and/or other food items leaving the kitchen) because it may be a low likelihood at this point she will follow the written 'agreement' we have in place. Now I feel bad I tried to discipline because it is truly unclear if that is even appropriate. I need some grace here though because her living with me is still a new thing and no one gives caregivers a 'guide book' on how to deal with a LO post stroke with likely undiagnosed dementia.
Anyway, I would love to hear your thoughts, ideas, suggestions/recommendations on what I did vs. what I should do going forward.
Now that I know I have made a mistake and admit to that...what about the other piece of what I am asking which is how to handle (prevent) this/what is the actual proper thing/s for me to do going forward?
She has had a stroke, which is an excellent predictor of dementia.
She was in a nursing facility (presumably that's the level of care she needs?)
A CNA at the facility showed you that we was already hoarding food.
I'm not sure I get your reasoning in thinking that your mother has the capacity for living without a great deal of medical and psychiatric support as well as 24/7 supervision.
Additionally, it seems it would be wise for her to be supervised/cared for by someone who isn't triggered by her past abuse and neglect.
What is Plan B? This isn't working and I doubt there is any way for you to fix it.
My mom starts with adult daycare next week fyi, so she will be there 3-5 days a week, and they will send a nurse every day she goes to day care in the morning to get her ready.
No caregiver is perfect but I hand it to those who were as new to a situation as mine who weren't ever (ever) triggered by anything at all (past or not) and didn't make a mistake throughout the caregiving process...ever.
My mom and I had many conversations that if I took her out of her previous facility and she came to live with me, that it would not be a 'promise' of a permanent living situation, but rather a 'temporary fix' until we could find a place that could take care of her appropriately. The reality is that I 'promised myself' I would keep her as long as I can, meaning that I want to make sure I've 'given this my all' and have done all I can to make this work. Honestly so far it's been working out well overall (she's clean, safe, fed, medicated, socialized, restarting rehab at upcoming adult day care, etc.) but things are not perfect and never will be...this is an example of an imperfection in me as a caregiver that I immediately recognized and am seeking a fix to so I'm not so sure it means 'time to move to Plan B NOW'...(?).
You can't treat Mom like a child. That is so demeaning. If Dementia is in play, Mom no longer can understand consequences. They do become like children but u don't discipline them like one,
It is true I could have transferred my mom but here we are; I am not 100% sure yet she should go back into another facility as as I mentioned in another post things are going well overall. I did/do not expect caregiving to be easy or go perfectly as I'm going to make mistakes as I'm figuring this thing out; she's compliant with her meds, prefers to live with me, is so far healthier/happier here and is safe/fed/clothed/housed/etc. and as mentioned now starts adult day care (which includes restarting of her physical therapy) just next week.
This is what I needed to hear regarding her no longer understanding consequences. In all honesty, I thought she did still understand which is why she 'snuck' the food in because she knew she wouldn't have to deal with the consequence of me telling her she shouldn't have done it.
Again, 'some' aspects of these things are new to me in terms of exactly how much my mom has changed and what she does and does not understand. It's my first time actually living with her in over 20 years and I'm trying to find my way in truly being able to see just how much she cannot comprehend anymore. I am not blaming anyone else but I had also received the advice that if my mom has dementia that she needs to be treated more like a child is and sometimes that means implementing the same kind of 'discipline' you would as a child, speaking in shorter sentences/ways a child would more easily understand, etc. I feel like I get conflicting advice in terms of how I should be handling certain things that are happening now.
Hopefully the Team at PACE (where she starts adult day care next week) can give me some good direction as the professionals there seem to be very experienced and caring and I do really want to do things the right way.
In theory, yes, I'd have my actual physical eyes on her every second of every minute of every hour of every day for the rest of her life, however, let's be real that that doesn't happen in any facility whether it be a nursing home or board and care or even a hospital. The PACE team will be providing us a med alert system that works in and outside of the home once she starts adult day care with them next week, so coupling that with perhaps me getting a sitter and actually 'scheduling' the times I leave the house is probably a modification I need to make now that I'm thinking about it.
Do keep in mind that I'm looking for actual solutions here in any potential 'caregiving gaps'.
I had a mostly normal childhood but my brothers and I all recognized that our mom's minimizing and shaming behaviors related to any perceived imperfect behavior we displayed as children was going to result in us being inadequate and less than sympathetic caregivers. A good example is the fact that my brother posited that mom was having a pity party and feeling sorry for herself in her late 80s when everything became an emergency. ("Stop feeling sorry for yourself" was one of mom's mantras). It caused us to miss the fact that this was a significant change in mental status and required medical dx and treatment.
It's good that mom will be out of the house a bit. You'll have more time to clean up the problems on her room. Can you remove the carpeting?
I have a really good therapist and I'm trying to sort through some similar things to what you have written about here - I often ask myself "Am I unfit as a caregiver?" "Am I not displaying the right amount of empathy?" "Is my past impacting my ability to provide the right type of care?"
Or -
"Am I being too hard on myself when I make a mistake in how I caregive?"
"Does this mistake warrant me putting my mom back into facility care when her basic needs are being met way better than in her previous facility and the current in-home care plan is overall working well (which was agreed to by the PACE care team staff that have been out to the home for multiple visits)?"
In short, I feel like I'm in this space where 90% of the time I am actually happy my mom is here (and she has expressed being happy being here) despite how hard/challenging things are/get, and I feel my decision was the right one for her to be in the home 'for now'. The other 10% of the time, I do something like what I've posted about here and question everything I'm doing and if I'm doing the wrong thing. I'm trying to do less of that and more of "I see a potential issue here; is this truly an issue in my caregiving process and if so how do I remedy it properly and fast?"
At the end of the day if being home with me isn't best for my mom I would not hesitate to move her to wherever next is best.
I am sorry about what happened with your mom. I know what it is like to 'miss something' when it comes to providing care. I'm used to only having to worry about myself, so being responsible for an adult and missing something tends to cause me to have guilt and I've never had as much guilt as I've had now as a caregiver. I'm learning however that there's always going to be things I don't do right, things I miss, etc., and I'm just going to have to learn, adjust and forgive myself.
Regarding the carpeting, unfortunately, I rent this house from my very best/dear friend. I cannot make any alterations. When she starts adult daycare next week I'll do a 'search' of her room for any food items. There shouldn't be much because she would not have had much time to put anything else in the room. I just have to figure out a better way to prevent it from happening again.
I raised my eldest son with ADD and constantly had to ask myself if the typical discipline was effective or fair for him.
At 65, your Mom technically could have the beginnings of other cognitive problems that come with age: like ALZ (which can occur at a very young age, like my sweet cousin whose symptoms finally became obvious to our family when she was 68 and it was mixed up with her over-dosing on her thyroid meds).
If your Mom has stroke and age-related cognitive problems, your high need for control will not be a pleasant journey with her.
In your profile you also talk about qualifying for Medicaid, please know that Medicaid in most states only covers LTC, not AL or MC. If you wish to care for her in your (or your friend's home), you will be working full-time only to (hopefully) cover a full-time caregiver and not saving for your own future. The cost of care is very expensive. Do you have family or children that will take care of you in the same manner? If not, you need to think deeply about this plan. Also, you're in your friend's home. There is no guarantee (ever) that this good will arrangement will last for as long as you are hoping. Absolutely nothing stays the same forever.
Solutions depend on what state and county you live in, and therefore what services are available to your Mom. Residential group homes exist in some states, and I think this would be the solution to aim for, but not sure what your Mom makes in SS every month.
I think it is way healthier for the both of you to not live together. Your life will be slowly consumed by her care, with no investment in your own life either financially, socially, emotionally, etc. She will be forced to be as "independent" as she is still able to be plus have social exposure that isn't her daughter (and with you both "triggering" each other.)
I wish you clarity, wisdom and peace in your heart as your work out what you think is a solution for your life.
I figured the forum would clear that up quickly and it has so I've confirmed that everything has to be on my end in terms of prevention of these types of things occurring again.
I do have a high need for control particularly with respect to her hygiene and the cleanliness of my friend's home as I know just how fast things can get out of control with my mom being a hoarder so you're right; she's not going to like many aspects of living with me. But I can't leave her in filthy pullups or let her hoard to the point of getting pests in my friend's house either right? I think I understand though that there's gotta be a 'healthy medium' here where I simply don't put expectations on/attempt to 'discipline' her for things that are unfair/that she cannot adhere to.
I have had many conversations with and continue to remind my mom that as discussed prior to her moving in with me, our current living situation is not a permanent one. I just don't know what is next for us yet. I honestly do not want to live in my friend's home forever, even after thinking about potentially buying my friend's house from her. Issue is I left a city I loved to live here and move my mom in. I don't want to live in this state but I don't want to move my mom away from her friends. It is tough. We just came back from a month abroad together. I was able to secure the kind of care there that made things SO much easier for us. She also had more of a social life there in the month we were there than she does here; it's hard to explain but the sense of community there was just so good. She even commented liking the physical therapy she received there better than here. And the cost - the cost made things such that I was able to have someone come in most days and provide help. So there is a bit of a dream there to potentially move abroad, however, I have a lot of concerns about that too and it is not a plan I could put into place quickly by any means.
I need to update my profile. My mom has Medicaid now. Her early retirement social security check starts soon. It isn't much (for here in the US anyway). She's been denied for disability twice. I've got some 'caregiver apps' pending (one that provides support in the home for instance), and she has recently gotten approval for the PACE adult day care program which she starts next week (she will be going there 3-5 days weekly).
Aside from a much older, distant aunt or two, I became estranged from my family when my mom got sick. There was serious dysfunction my mom's sibling was bringing into play that has been longstanding, and after many months I decided to go 'no contact' which resulted in me doing the same with the few other family members I have (my family is extremely small). My one sibling is 100% MIA and just before my mom's stroke (when she had lost her home) told me to never contact them about her - they have held to this as they will not respond to anything (not even a hello or Merry Christmas) from my mom. I have no spouse or kids. I am indeed concerned about my own future now as I just got diagnosed with a medical condition that I'm honestly too overwhelmed to think or talk about right now. I'm just trying to take all of this one day at a time until/as I figure out if/how long I can do things currently 'as is', which so far has been working out 'ok' albeit nowhere near perfectly.
Thank you so much for the well wishes; I really appreciate it!
If she's stuffing candy in her bra for later she has dementia. All the written agreements she made with you can't be taken seriously. The same way that you can't hold a toddler to their promise to "be good".
All you can do is take away all access to food that you do not supervise. She eats when you give her food. Then you check her out after the eating is finished to make sure she hasn't stuffed anything in her clothing or tried to hide some elsewhere.
You put locks on all of your kitchen cupboards. You put locks on the refridgerator and freezer too.
You said there will be no eating in the bedroom and there will be no eating in the bedroom. Take whatever measures you have to so that will not happen again.
If your mother throws a tantrum about it, react the same way you would when a child or toddler throws one. Ignore her.
Our current set up is as follows - I use the regular fridge in the kitchen for all of my food. On the opposite end of the kitchen is a small dorm-sized fridge. I put meals and drinks in there for the week and she gets them out and heats them up in the microwave on top of 'her fridge' whenever she is ready for a meal. Next to her fridge is 'her table'. It's a lower sized table that has a fruit bowl on top of it. In that bowl is all of her fruit and snacks.
So using her power chair, she has 'free reign' to just go in and eat her meals, drink and go eat snacks whenever she wants. The only things I do typically besides the stocking up of things is to put her meds out in the morning and evening on said table (checking to make sure they've been taken on time), and to ask her when I see her going in the kitchen if she wants anything out of 'my fridge' (because I keep some things in my freezer she doesn't have access to).
I'm thinking (just as you stated) that I need a lock on her fridge and maybe I don't keep the 'bowl' out on the table anymore for access at any time (she can ask when she wants a snack, fruit, etc.).
This morning she told me where she had put some fruit cups from the bowl within in her room so I just removed those.
ETA: Most of friends think I'm a little OCD about cleanliness. And maybe I am. But if they'd lived with what I'd lived with when I was younger...
I still have PTSD from whenever I turn on a light switch to this day. Those who know what I'm talking about know...
"Now I feel bad I tried to discipline because it is truly unclear if that is even appropriate. I need some grace here though because her living with me is still a new thing and no one gives caregivers a 'guide book' on how to deal with a LO post stroke with likely undiagnosed dementia."
You have chosen to take your Mom in to live with you.
In my opinion, that was not good decision making on your part, but you have done it.
With all you know (and you DO KNOW that your mother likely has dementia) why would you imagine that she is capable of making any kind of agreement/contract with you as regards food or anything else?
You describe an incident of loss of control of bladder and bowel.
You describe an incident of your mother stuffing candies into her bra to eat later. You need to check on her frequently, and she's hiding boxes under the bed.
And even with those examples of your Mom's disabilities, you think that she's capable of following agreements/contracts regarding where she'll eat.
Your mom is no longer capable of social contracts with you or anyone else.
You mom will not be changing--at least not changing for the better.
Things will escalate from here.
You are already having triggers of remembrances from childhood.
I think need gently to tell you I think it's time to re-evaluate your decision to be caregiver for your mother in your home. You have taken on a 24/7 job with the best of intentions, but with little grasp of the realities involved.
I'm so sorry. Once you've taken an elder into your home, you have complicated the issues exponentially, and have painted yourself into a corner. Given that, the corner's a good place to think from, because at the moment you're stuck there. Changes may have to be made in the new year. It's as good a time as any to begin to think on everything, and slowly come up with a plan for moving forward.
It's good to hear from you again, Psalms, but I am sorry for all the travail for you both. I wish you the very best.
The food hoarding is most likely going to worsen. You're renting a home from a dear friend, and you don't want to make problems for the friend. It only takes a couple of roaches to start a problem that friend will never forgive. Also people with dementia can be very clever about how they hide food, such as putting it in their mouths, then taking it out and putting it somewhere else, such as a bathrobe pocket or on top of the refrigerator. At that point it's not only food, it's roach bait!
Holding mom to any agreements is likely impossible. She won't remember, or if she does, she may get what she's supposed to do confused with something else, or she may only remember part of it. You can't get compliance when she gets like that!
Good luck with all of it.
Trust since as I referenced in a previous post that I know what it is like to grow up in a home with pests, I am taking the food thing seriously. I think it's clear I have to start locking things away. Yikes though regarding the examples you gave of how some will hide food...
So the plan from the beginning was actually to bring my mom home but to continue looking for other places to put her 'just in case' and so that if the day came we'd both have an idea of where she'd go. I'm not even sure where to look right now because if she were to be placed again I'd want to be close to her but I don't want to commit myself to being in this state long term.
We just returned from a month abroad together and I admittedly spent more time planning for that than looking at local facilities for her (as like I said I'm not sure if I'd want her to be placed locally here). That trip has been very eye opening for me as if I could make such a move happen it would be our number one option honestly. I say this because I was able to accomplish getting a (consistent) caregiver in the home (hotel) for us while there who my mom loved and who did an amazing job. The same company we used took care of other things like equipment rental and supplies as well. Most importantly at a price for caregiving that was SO much more affordable than here. My mom continued PT while there as well and even commented liking the PT she received better there than here. But alas, there are also cons to attempting to make such a huge move so for now, it is not an actual 'viable' option I think. But it sure was one heck of a relief to have that kind of help while we were gone.
Anywho, now that we're back 'home'...and back to reality, I do plan on visiting a few facilities with her this month. You're right that I'd say 'she's not ready for it' but really perhaps a more accurate statement from me would be that I'm not ready for it. I didn't want to speak about this too much but the truth is I don't know if now my own health might now (or soon) end up making the decision as to what happens next for the both of us.
The PACE program she has is going into next month did give me a list of facilities that they place patients in when the caregivers go on respite. At the time I reviewed this list, they stated that these are the 'preferred facilities' that they would support me in placing my mom in 'should' we end up in a place where she needs to at some point get placed. Again, for me, I don't know I'd want her in a local SNF. I've moved around quite a bit in my life and right before my mom's stroke I thought I was ready to move again but this time abroad. Everything is so different now that I don't know exactly where I want to be next and am just in this place where I know that I don't want to be here and that's about it.
I really appreciate the complements.
To be honest, I don't think I'm a wonderful person at all for taking in my mom so to speak.
People don't know what my mom has been through. Looking back I'm 100% sure she did the best she could despite not having the mental/emotional support one in her situation should have had from an early age and "pre serious trauma" she experienced in life. For whatever reason/s it has become clear to me the older I get the more she was left on her own with two children when she should have had help (and she did have help as my mom/sibling/I did temporarily live with my grandparents for a bit of time; she just clearly needed even more help and maybe should not have lived on her own with my sibling and I).
Although this is all water under the bridge to an extent, it is what drives me. In other words, I feel like I have grown to have a clear picture of how much she did actually do and how hard it must have been for someone with her limited mental faculties to even just hold down a job that put a roof over our head until I left to go off to college. Despite having a stroke now and likely dementia many of these behaviors existed for as long as I can remember yet the best her own mother could do is just call her crazy.
I understand many would look at my situation and say not to do what someone didn't do for you but we all have our ways of looking at things. I'm currently in a place where I can't be made to 'not do' for my mom knowing that she simply didn't have the capabilities to do more and thus knowing her limitations was actually at the end of the day doing everything she could. Knowing this drives me to to do everything that I can because I know she sacrificed to have my sibling and I under her care because she loved us at the end of the day.
Ok so that was very long...
When she was stuffing the candy in her bra I reminded her of the 'rules'. With this past recent incident I reminded her of the rules again and also did have the conversation with her that if she cannot stick to them, it is not her fault because I understand it is 'likely' just something she cannot do. But that if this continues she will have to go into a facility (as previously discussed). I also let her know that we'd be touring two facilities this month as we should keep our options open in case that is the best path forward.
I hear her currently in the other room vacuuming for the first time without me asking her...
Coincidence? (lol)