I'm a caregiver for my 91 year old mother with dementia, and 14 year old pomeranian with a brain tumor. It gets fairly weird around here, being that the two of them share similarities in behavior.
Don't get me wrong, I love the both of them and am fully aware neither of them can help their situations. The pomeranian is my sidekick, my mother is...well she's my mother. I also realize I've chosen to be here for her and to try to help her. I'm pretty much all she has for this, and am on my own with it.
Here's the thing, my mother has always been mentally ill and these days, it's even worse. She can be quite abusive. A nursing home is not an option, as there aren't any good ones where I'm located, and she'd last about a week in one of them. Either she'd give up, or the aides would smother her in her sleep. She can be pretty frustrating.
Part of the time, she's non-compliant with eating, as well as with taking her meds. This is usually when she's mad at me about something, which can be anything from not responding to her the way she wants, or in general just my breathing.
Current situation is that she's become bed ridden. She's having problems with one of her legs that could be anything from phlebitis (which she's had before) to a blood clot. I've tried repeatedly to get her to go to ER, but she has a different excuse every time as to why she won't go. The latest is, she 'won't go because of me'. She's always blamed me for a lot, but lately is blaming me for just about everything she can think of.
She wouldn't agree to home health care, so I got it myself to help with taking care of her. I should probably mention I have cancer. My body just won't do the things I need it to. The home health aide isn't supposed to do anything for my mother, but her running errands and light house work 4 days a week helps a lot.
I've tried everything to get my mother to accept medical intervention. Earlier tonight when she popped the latest excuse for not going, I popped and told her it's not because of me. I reminded her of all the other excuses. I really shouldn't have done it, because now she's refusing everything.
Usually when she flips into a different 'mood', I can just wait a bit until that switch flips and she's more agreeable. When she's like this, it can take days. The worst of it is, she's refusing her heart and BP meds.
I've recently taken a different approach to all of this. When she's refusing, I just chill and wait...and pray a lot. Pushing her doesn't work, and causes just that much more stress for me.
I guess I just need to feel not all alone with this. I recently lost a very close family member who was like a brother and my rock through this, and now am alone, with the exception of my sidekick.
I made a comment the other day to my home health aide that my mother doesn't even like me much, which she found pretty amusing because it's the truth. Lately when my mother complains about her care from me, I've told her a few times to fire me. She never knows what to say to that.
I've been doing everything for her, preparing her meals and taking them to her literally on a silver tray, taking care of her bedside commode, doing her laundry, applying hot compresses to her leg, keeping track of her OTC pain med, her regular meds, etc.
Is this pretty much a common thing when caring for an elderly parent with dementia? Do they get really mean at times?
I was caregiver for my father but he was a bit younger and had Multiple Myeloma, which he passed from. He was never mean with me.
So I guess that's it. Thanks for taking the time to read what has amounted to a chapter in a book. My apologies for the length of my post.
My home health care worker has noticed an ongoing physical and mental decline with my mother, and I have as well.
When she refuses her meds, she refuses food along with them, so no hiding them in food.
She'd have to already have home health care for herself, before a nurse would come to the home and she refuses home health care for herself.
No, asking her to go with me at this point wouldn't work, as she's somewhat bed ridden. I do thank you for the suggestions, though.
I was ready to leave the other day, after she again attacked me verbally. This time it was in front of my home health care worker, which was a surprise. She doesn't usually let others see this type of behavior towards me. My aid was surprised as well.
Later that evening, mom seemed to forget what had happened. When the switch flipped and she acted like she cared and was being sweet, I just wanted to cry and I'm not a cryer. This is disease causing this and it's hard watching her decline.
I've begun documenting the refusals of meds, food, and medical treatment when they happen.
This situation is a hot mess.
Case in point, when mom was more ambulatory, I'd just gotten a new camera and was anxious to try it out shooting the full moon. I stepped out on the driveway at around 9pm, leaned against my car in the driveway and was lining up the shot, when the front door opened.
There was mom, telling me to come back inside, a neighbor was going to mistake me for a prowler and shoot me. Now, we do have a light post at the end of the driveway, which was illuminating me to the point that I felt like I was in a spot light.
I told mom to go back inside, that I was well lit and if I got shot, it'd be because one of the neighbors recognized me.
At one point, mom kept thinking I was stealing her pants. Now, to begin with, I've never stolen anything in my life but if I were going to, it would not be her pants. For one thing, she's 4 foot nothing, and I'm an Amazon. My knuckles drag the ground when I walk.
In reality, she was hanging up pairs of pants on hangers with other pants under them and forgetting about doing it.
You know, that in itself is enough for me to try to take care of her if I were doing this out of guilt feelings. Can you imagine the birth scenario? I wasn't a small baby.
The woman has a multitude of purses, for which she actually should have index cards for me to access when she asks for something from one of them. She keeps them like file cabinets, and continually switches the contents around from purse to purse.
Again, when she was ambulatory, she got into a thing of throwing things out. No reason or rhyme to it, she just threw things out. She threw out a box of very valuable old plates and dishes (heirlooms) I'd been trying to hold onto. I found them and brought them back into the house at which time she threw them out again. Now, the Christmas tree ornaments are missing. Thank God I know where my dog is.
She literally screwed up the tv I bought for her with hitting the remote control mute button so much. I have NO idea why she mutes a tv so much. She also loves to channel surf to the point that it's impossible to watch anything with her. She can trigger seizures with it.
She used to switch things around in the kitchen cabinets so much, that every time I'd go into them for something, I never knew where it'd be. Same with the living room curtains. She'd buy curtains and return them the next day for different ones which she then returned for new ones, over and over. It got to the point that when I woke up and went into the living room, I thought I was in a different house every day.
Same with the furniture, when she was able to move it around. You could never be sure of just sitting down and knowing a seat would be under you.
So do any of you have any funny stories or can you identify with any of this?
My aid does help with mom more than she's supposed to, in the way of fixing her a meal or picking her meds up for me. She's good with her, which is a deal breaker as far as the aids coming in. I've let some of them go because they had no experience or patience and very little respect for the elderly with dementia. Mom has never been mean with them at all.
MidKid, I'm so sorry you're fighting too. I'm also sorry you've had such a crappy time of it as well. It's hard enough fighting the disease, without having to fight for help with it as well. I get that. Re my brother, unfortunately his health and the health of his wife is bad too (they're older than I am), so they can no longer travel here as they once did.
My brother also doesn't have the money he once did, being that he's had to retire due to his health. I don't have the money I once did either, because I've had to retire due to the cancer. As you're aware (unfortunately), cancer is pretty expensive. I do appreciate the advice and suggestions, as well as the prayers. I'll certainly keep you in mine as well.
Abby, unfortunately I won't be getting better. I'm terminal and am in palliative care myself. I've been able to outrun it this long, so maybe will longer than statistics give me.
I wasn't supposed to have made it through the ovarian cancer 28 years ago. That was when I was helping to care for my dad who had Multiple Myeloma. I'm currently fighting Non-Hodgkins lymphoma. I really do appreciate that you and the others care and care enough to try and help me with thoughts on this.
At this point, I'm not really sure what's going on with mom physically. She says it's both legs, and then at other times there's no pain. Even so, she's still basically bed fast. I realize that soon she's either going to have to agree to home health care for herself, or we'll have to make other arrangements.
I hate it but my body is not going to keep doing this much longer.
FreqFlyer, I'm so sorry you've had serious health issues yourself, and have had to go through what you have. I know it's not been easy for you.
Mom knows but sometimes she forgets. She swings back and forth from being very mean, to feeling like she's a burden to me and worrying. This is so complicated.
I'm going to talk to my aid about what to do if something unexpectedly happens to me (because of the cancer) before I can make other care arrangements for mom. I'll instruct her to contact my brother. The family member I lost was going to take care of my little dog, so I'll need to make arrangements for her now, if she outlives me. She's 14 with a slow growing brain tumor, so not sure who'll go first. I think we're a hard bunch to kill. lol
Goodintentions, I'm glad you found a good facility for your dad. There just aren't any like that around here, unfortunately.
I really do think the mental illness is what makes mom so mean at times. I also think the dementia is compounding it. I don't think she's fully responsible for her actions, so in knowing what the consequences would be, well I just don't want that for her. She's still my mother, I don't always like her much, but I love her. Even so, we're going to have to make some arrangements soon, because I can't keep doing this.
Texangal81, a twenty and a roll of scratch offs should do it, but you didn't hear it from me. If I ever lose my sense of humor, that's when you'll know I'm in trouble. Thanks for the smile! I'm sorry to hear you're going through it too. Hugs
If we can't laugh then we're sunk. We have to be able to laugh. It's what keeps my son, brother and me sane. I hope that put a tiny smile on your face.
I'm going through a nearly identical situation with my mom. I'll let you know when I find that nursing home........
My mother has always been “sweet” but now that she lives with us I realize she is passive aggressive. Does not like me and is very stubborn. She is harder to deal with. At least my Dad had an excuse. Look up the “Gray Rock” method. I had to use it with my Dad.
You don’t have to comply with her demands, refusals, tantrums etc. Tell her she must go to AL where she can be cared for by medical professionals. or you will be hiring someone to take care of her. You need to care of you first. Your own health is in jeopardy. You are allowed to fire yourself. Take care of you and your sweet companion. Your mother will end up suffering the results of her own actions. Don’t allow that to happen to you too.
Oh, I know how it can be when dealing with a serious illness yourself and trying to help a parent. My folks were still mobile but refused to downsize. I became their chauffeur when they stopped driving. Geeze, those folks liked to get out of the house 2 or 3 times a day. Not easy to do when one is still working and one's boss is the Devil Wears Prada :P
Boo, does your Mother know you have cancer? I didn't tell my folks because I didn't want them to worry. I knew how my parents were when I had a simple cold. I could hear the helicopter blades above.
Don't get me started about my trials and tribulations when I broke my primary arm and my parents reactions. Hey, what part of I can't drive couldn't they understand? No, Dad, I can't drive you to the barber shop... [sigh].
You've been given a lot of good advice here. We don't want to see you become one of the 40% of family caregivers who pass away while caring for a parent. Then what? Where would Mom go? Where would Mom go after being being at your brother's for two weeks?
You get on the phone and get that brother out ASAP.
Time for HIM to step up and in. A palliative care situation sounds right for mom. Something different from what you are now doing which is circling the toilet bowl with no hope of change.
I, too have cancer and one of the first things my oncologist asked me was "Have you been under a lot of stress in the last year or so?" Dh had the grace to be a little embarrassed, he has been 'sick' at some level, near death or such for the past 12 years. Most recently was 2 heart attacks last summer...which I babied him through, and my mother's care with an angry YB fighting me every step of the way---I said "well, yes, I don't know, this is just my life". He gave DH a stink eye and said "you WILL take care of her as well as she did of you. Hear me?" (Ironically, in the 20+ days since we began chemotherapy he has been out of town 15 days. ) He'll maybe text me at night and tell me how bad the jobsite is going, but no, he hasn't really stepped up. And I don't expect him to.
No, he will not step up do 'all the things' I do, and that's OK. I just need him to not do some kooky thing and make me more stressed.
You need to put mom on the back burner somehow and focus on you. I know, it's really actually HARD.
If brother will not come, or cough up some bucks for more help---I would look and look HARD for a facility for mom. She will outlive you at this rate. You cannot possibly do this alone and expect to have ANY QOL for yourself. (I am talking to myself here, too. We need to learn to care better for ourselves. I am assuming you are about my age. All our lives have been caring for others. And that's OK as long as we WANT to and can.)
You, my dear lady--are burned out. Please keep looking for outside help and consider moving mom to a NH of some kind. I don't know where you live, but there HAS to be someplace that isn't the rathole you described....prayers for you today.
Stop apologising! Stop thinking you should be able to do this alone! Stop keeping everything to yourself!
I am really sorry that you had such awful experiences when you were working in facilities, and I wish they didn't ring so true. But when was this, can I ask? I'm not pretending everything's wonderful nowadays, but I do believe there has been steady progress in practice and monitoring; offset by rising demand, greater need and worsening skills shortages, true, but at least we're facing in the right direction. And of course the other point is that when bad examples get shut down, it does prove that the system works.
Your mother won't see her doctor and won't let you call anyone in. But she can't stop you *consulting* her doctor for advice about what to do, and if the doctor says "we need to see her" then the doctor must also tell you how. And there are ways! You can hand her the phone with the doctor on the line. You could, theoretically, call an ambulance and even if she won't go with them or let them examine her at least it's another set of eyes on her and more information on record. It all helps.
The home health aides who are coming in, I realise they're for you and not for your mother, but how do they get on with her?
The Stelazine was discontinued because she wasn't monitored properly and it tends to gather at the pituitary gland with long time use, which it did. Doctors at that time thought it was a brain tumor on imaging. It caused Parkinson's symptoms. When they discovered it was the Stelazine, it was discontinued. Her family doctor passed away, and her new doctor at that time prescribed a sedative for her, which she rarely takes.
Believe me when I say, I would rather spend what's left of my life in pursuit of the things I enjoy, though these days I'm a bit more physically limited. Here's the thing, sometimes our paths go in directions we don't plan, nor would we choose for ourselves. Though I have made this choice to help her, it's difficult and as I've mentioned, I just didn't want to feel alone with it. That's why I came here, as well as to see what others are experiencing, possibly be able to offer some helpful advice, some humor, compassion, and to learn. I do welcome suggestions and I also consider them.
I thought maybe I should just keep it to myself but it gets hard handling it alone. I've worked with dementia patients before but it's different when it's your parent, as well as I've not worked with anyone in the beginning stages with complications of mental illness. There is no handbook for this.
She did ask for her meds earlier today, because her heart acted up. I got them for her right away, and she ate lunch as well. I think the tantrum was because I didn't react the way she'd hoped I would, when she tried to blame me. It just doesn't work with me anymore.
Gershun, I used to work in one of the local nursing homes as a nurses aid and believe me when I tell you, the things I saw and encountered were awful. Out of the entire staff, there were maybe 4 people (including myself) who actually cared about the patients. There was abuse and neglect of the patients which a few of us reported to the state, the state investigated and shut them down. Just recently another local nursing home has been shut down by the state for the same thing.
I witnessed difficult patients being drugged and tied into chairs during the day (I worked night shift but sometimes worked doubles into the day shift). One day I went into a room where another aid was shoveling food into a residents mouth in such a hurry that the resident was choking on the food, because that aid was behind with feeding her patients.
A woman with terminal stomach cancer was repeatedly left laying in her own feces, because the other aids didn't want to change her or her bed. Only myself and one other aid was willing to do it for her. There was so much more but you get the idea.
A palliative care unit sounds like something to check into. Thanks for that suggestion.
Countrymouse, when she had Phlebitis before, that's what her doctor said to do. As I've mentioned though, I'm not sure which it is without a doctor checking her, though my mother said the compress did help with the pain.
I currently have no support from any health care professionals for her. She does see a nurse practitioner, when I can get her to agree to go. This one is new to the case, and has seen her only one time so far. The one she had before, left the facility.
Thanks for the hug, Isthisreallyreal, and I send hugs back to you. Re the psychological ramifications, I've been in therapy before, and majored in psychology. I got passed all the guilt trips, manipulation and such as a result of a lot of years working on it. I broke the training.
I sincerely just want to help her have the later stages of her life as easy as is possible, while retaining as much dignity as she can. I'm not looking to get anything out of this, other than that. I don't expect thank you's from her, though occasionally when that switch is flipped, she surprises me with one.
I'm glad your dad is doing better, ML4444. What I meant is that she'd either sink into deep depression and give up, or would be abused in the nursing homes in my location. I sincerely am glad you found a good one for your dad. I know mom will only get worse, which is another thing that scares me about the future. At this point I'm taking it one day at a time.
I do have a brother who lives across country and wants her to move in with him, but she doesn't want to. He doesn't have a lot of patience with her, so not sure how long that would last. Even so, I've encouraged her to consider trying it. Awhile back I tried to talk to him so he'd understand my health situation and the toll this is taking on me, if he could help a bit with mom. He wasn't approachable at that time but maybe he's thought about it and that's why he made the offer?
Alvadeer, I've never heard from her that I was a good child, so am certainly not expecting to hear it now. lol That's not what this is about, though I understand why one might think that.
These are the laws in my state. If I call a squad for transport and she refuses to go, they won't take her. If she were unconscious, they could take her. Unless she's up on the rooftop thinking she's the light on a lighthouse when they roll up, they will not take her.
When my father was alive, with the event of one of his heart attacks during which I had to perform CPR on him as the squad rolled up, he regained consciousness enough to refuse to go. They had to wait until he passed out again before they could transport. He coded again in the squad and again in the er.
Sunnygirl1, I think my aid might help.
As to an elder laying in bed with "anything from phlebitis to blood clot". Call the ambulance and have Mom transported to the hospital. At the point she arrives there ask to speak at once to a social worker in charge. Explain that you have cancer and that at this point you are no longer able to care for Mom in your home and will not be able to return to your home. She will be able to place Mom in about 1/8th the time you could even make out the first forms.
It is time now to live your own life. Cancer responds to stress hormones like cortisol; they FEED cancer. Visit your Mom wherever she is placed. Then get on with living a life. Sew. Take up painting or drawing. Listen to True Crime Podcasts. Do puzzles. Whatever makes a peace in your mind. It is time to resign the servant-status that this sort of parenting creates in their children. You say that Mom has "always been mentally ill" and that now it is worse. I am sorry for her illness, if indeed it is illness and not meanness. Becoming old, helpless and demented seems seldom to improve our personalities. Mom may be better with the medications that she will not accept from you but may accept when in care; you may be surprised. You BOTH might feel better. And in any case, you will be able to get on with a life somewhat worth living, and begin to take care of YOURSELF. I wish you much luck moving forward.
You matter as much as your mom. People's personalities tend to magnify as they age, so she will probably progressively get worse. You need to talk to your doctor about alternatives so you don't become a statistic.
Have you ever read anything about FOG, fear, obligation and guilt, you sound like she trained you well and now is the time to come out of the FOG and enjoy some sunshine.
I am glad that you are getting some help to relieve your load. Now to get mom some help.
You are not alone in your struggle to do what is right for an ungrateful parent.
Also, one quick point - you're applying hot compresses to your mother's leg? Is that on medical advice?
And then... yes, I think you were right to mention that you have cancer, and I don't think I'd be treating that point so lightly. For one thing, you need to conserve all your resources for your own health. For another, your mother needs support from a team of people, not just from one individual whose own health is a serious issue.
You say there aren't any good facilities near you, and you say that your mother won't accept home health care. Have you actually been to look at these kinds of services, tried them, and it hasn't worked out? What support from health care or social care professionals do you currently have?
If it gets to the point where you truly can't handle your mom's care it might come down to getting a doctor to claim she is failing to thrive and she might not have a choice but to go to extended care. Hospitals have palliative care units. If there aren't any suitable nursing homes in your area that might be an alternative.
I'm sorry you are going through this. Hang in there. I'm sure you'll have more responses soon. With better ideas than mine.