Mom faking -- How should I deal with it?
My husband and I are retired. We put our home back east on the market and moved to AZ in late 2007 to look after my very elderly parents in their home. Dad passed in 2009, our home sold later that year, and in 2010 we bought a place in AZ. Parents' home is in the desert, we wanted to be able to do outdoor activities so bought in a cooler area, which is a 2-hr drive (one way) from parents' place. Since then, I stay with Mom at her place to look after her 24/7, and husband stays at our place.
Mom is 95 and although she had a round of medical problems for most of a year during 2013 - 2014 (pneumonia twice, also diagnosed congestive heart failure, had pacemaker and vena cava filter put in place, and she has chronic kidney failure), for the last year she has been doing really well and no additional problems. She was put on oxygen 24/7 a year ago, but for the last couple months only uses it at night because she didn't feel she needed it during the day -- and I agree, as her blood oxygen checks always range around 95 which is really good for her age. I think she was put on the 24/7 oxygen because doctors felt she would deteriorate what with the pneumonia issues and congestive heart failure, but she has actually improved since then.
Prior to the hospitalizations, Mom was fine with traveling from her place to ours a couple of times a month for a 3- to 4-day visit with my husband, but in the last year and a half she doesn't want to do it. All that is required of her is to get into and out of the car, really, because for anything other than a distance of about 20 feet (she will walk short distances) she rides in her roller/walker. She spends her days in a recliner chair and reads or naps, only getting up to be taken to the bathroom and then to get ready for bed at night. The same routine is followed at both homes, she eats the same meals both places, etc.
Both my sisters live in this state, about an hour away from Mom's. They both work full-time. Roughly every 5 to 6 weeks, they will agree to come and look after Mom so that I can go visit my husband and he and I can have some "alone time" together and I can get a couple of days off.
My husband has arranged to fly to FL to visit his older son there for a few days. I asked Mom to be willing for us to go up to our place to look after things and pets during his absence, and she strictly refused to go. So yesterday I needed to go up there and get the pets and bring them to Mom's house -- she didn't like that idea either, but I told her it was either one or the other. She can't be left alone for 5 hours and there is no one I can ask to come and look after her for that period of time. So she had to go along for the ride. The plan was to drive the 2 hours up, relax there for about an hour and stretch our (my) legs, then drive the 2 hours back to her place.
The trip up was just fine until we got about 1/4 mile from the house. Suddenly she asked me if I had brought her oxygen tank, and I hadn't even thought of it because she doesn't use it now during the day. Immediately she said she felt like she was going to pass out. By the time I got to our house -- 5 minutes later -- she was moaning and whimpering. I told her it would be best for her to just stay in the car, and she agreed. I also told her that if she felt faint, to lean forward and put her head down, and she didn't do that.
My husband and I rushed to get the pets loaded up in the car while Mom cried in the front seat. My husband asked her twice how she was doing and she didn't even look at him and didn't reply. However, during this same time she carefully put her sunglasses in her purse and reached for Kleenex tissues without fumbling. Her color was good, she was not gasping for air, etc.
As I was pulling out of the driveway for the return trip, she muttered some "gibberish" in a high voice like a little girl and whimpered incoherently. About 10 minutes later she "came out of it" and asked if we got the dogs, and I said Yes. A few minutes after that, I had to stop for gas and she asked if I was OK and I said Yes and asked if she was OK, and she said she was "Fine." We conversed some on the drive home, with her apologizing and saying she was embarrassed she didn't acknowledge my husband. She maintained she didn't remember anything about reaching the house.
Here's the thing. As mentioned above, her house is at an elevation of about 2000 ft and our house is at an elevation of about 4000 ft. But we hit the 4000 ft elevation roughly 30 minutes into the drive, because of the terrain. And we stay between 4000 and 6000 ft for the whole rest of the 2-hr drive. She was not having any problem at all until we were almost within sight of my house.
Both my husband and I are positive she faked feeling "faint". She does have some passive-aggressive behaviors at times. Any ideas how to handle this?
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And as for my mom working herself into hysterics, these episodes which did erupt in hysteria were infrequent and occurred many years ago, but she has the same tendency now. Confront her with the truth and she will get bent out of shape. Fortunately, most involve stuff that is of little significance so no harm done. At least for now. I am not sure what will happen if she has some sort of accident which puts her back into a nh. The day she was released from the time she fell and had to go, she was well on the way to becoming hysterical. I recognized the symptoms but she was released before the hysteria reached end stage. Comes down to every case is different.
Given this elderly lady's renal function and electrolyte imbalance, I have no doubt that she actually feels unwell, but may be unable to be more descriptive than "I feel really bad".
I really like the sound of the group home lady - nothing beats word of mouth recommendation. Best of luck, hope it works out.
But I also don't think either of those things were due to altitude or low blood oxygen. I think her suddenly not feeling well was potentially psychological.
Still, being that as it may, I agree that I can no longer expect her to tolerate going to my husband's and my home.
I have found a local (2 houses away) registered caregiver who can come and stay with Mom for periods of time during the day, and Mom knows this woman somewhat well which is a plus. I hadn't thought of her previously for respite care because last I knew she was working full-time somewhere, but I checked and although she works full-time, she has a night shift and is quite willing to come to Mom on scheduled afternoons. She can't look after her overnight so that I can be gone for a weekend, but has a friend who runs a group home who might be able to do that.
I hope the renal guy is going to get his finger out. If you notice any worsening symptoms, get back on the phone and be a squeaky wheel.
Having been there, I do understand the frustration and I do understand the inescapable feeling that it's a remarkable coincidence that these things crop up at the most inconvenient time possible. But.
You could get heavy with your sisters; or, distant plan B, get your husband to come to you; or even more distant plan C, hire a caregiver to stay with your mother while you get well-earned time with your husband (not to mention downtime for yourself). But the one person you can't reasonably expect to register the need to fit in with these difficult logistics is your mother. Her saying that she doesn't want to intrude, by the way, sounds like an excuse - a more acceptable reason than that she just can't shift herself to make the effort.
Only she truly can't. The trouble with CHF is that because its course is so humdrum and outwardly uneventful, it's easy to miss how ill the person actually is. Please look for alternatives: your mother really can't do this journey regularly, AND you really do need that time together and that break for yourself.
The first option would be spelling out in red pen to your sisters that your mother is no longer able to travel any significant distance and therefore their time has come: you need one weekend in x from each of them, and they can get their calendars out and commit.
Maybe look at it this way: sooner or later you will need to make alternative arrangements anyway, so you might as well do it now. I'm sorry you've been getting this attitude from them, but I hope that if you can get the severity of your mother's situation through to them they might grasp that if they want to spend any time with her they'd better get on with it. They might, you never know. Best of luck, please update.
About 2 miles from our house, she complained of not feeling well. I pulled over and checked and her blood oxygen was fine, but her heart rate was a bit low -- mind you, it fluctuates a lot which we know. I did put her on her oxygen at that point anyhow even though her blood oxygen was very good, and continued to drive.
She did not feel better in a few minutes, so instead of driving on to the house I pulled in to a fire department. Their EMTs evaluated her, and because her heart rate was irregular they felt she needed to see a doctor and took her to the ER at the nearest hospital. Her heart rate is always irregular ... she'll have a few rapid beats, then a few slow ones, then rapid again ... her pacemaker kicks in if the beats slow down too much.
She wasn't dizzy, she was able to give her name, age, birthdate, day of the week and month of the year just fine to them.
In the ER, they did blood work and the only alarming thing was that her potassium was high and her kidney function registered at "8" which is down from the low 20's. After a couple of hours in the ER, she just wanted to go home. They wanted to keep her at least over night, but she insisted on signing out "against medical advice" and I brought her home (I delivered the pets to our place while the EMTs were taking her to the ER, then hubby and I went right to the ER and stayed with her).
Again, I tend to feel that she has developed this THING in her mind about going to our house. The only reason she has ever given me for why she doesn't want to go there is that she feels she is taking away my time with my husband because I have to look after her during our time there. I've told her many times that this is not a problem, and that she is not interfering with our time together -- we are *together* which is the fundamental point. And the fact is, because my sisters can't or won't manage their time so they can come and give me a break every 3 to 4 weeks by looking after her for a weekend so I can spend time with my husband, if she refuses to go up to our place then I don't see him hardly at ALL. Somehow this does not register with her.
I've sent the results of her bloodwork and urine labs to her doctors and will be making appointments for her to be seen tomorrow, so that is being followed up on as quickly as possible. I'm most concerned about the low renal function, but on the other hand she urinates approximately 6 cups of fluid per day which falls within normal ranges, so I'm a bit stumped. She was on Lasix and took a potassium supplement every 3 days -- she'd had one Friday morning which is probably why her potassium was high. Per the ER doctor, both Lasix and potassium have been discontinued until her kidney doctor gives his opinion.
Don't get tripped up by her CHF, will you? It trots along peacefully for ages, but keep a good grip in case it suddenly decides to gallop. Hope things go well from here.
Being burglarized adds another element to wanting to stay at home. After that happened to me, I was uncomfortable leaving for fear that the thieves would return if they saw my car was gone. I did create an area that could be locked so all the financial and personal data was secured in the event someone did break in. To this day I still have some anxiety when I leave and double check the doors to make sure they're locked.
For older people, I think having been burglarized would be even more traumatic.
I am, however, looking into whether or not she could occasionally stay short-term at a local assisted-living facility, and I am going to check with one person she knows who I think she would trust to look after her for a few hours now and then to give me a break.
My husband and I bought a home in AZ because it's our plan to stay in AZ regardless. My Mom and Dad's place is willed equally to me and my two sisters, and my husband and I would not be able to buy out their share. Further, their house was uncomfortably crowded with the influx of our things we needed handy when we moved here. My husband likes to stay busy and have things to do, plus he has a chronic pain issue and being active helps with that, but Dad would not let my husband do the fix-it things, Dad preferred to call a professional. That left my husband with nothing to do but watch TV all day. He wasn't okay with that and chafed at the bit to get back to having his own property he could work on, so we bought.
Mom wants to stay in her own home. She has a big picture window with a wonderful view of the mountains and clouds, and even though she can't do much for herself she knows where everything is which I think gives her a nice sense of "still having some control". Both my husband and I know that being in her own home with her own things is a type of strong support system in and of itself for her, and she would not be happy moving somewhere else. If she had dementia issues and whatnot, that might not be the case, but her mind is in good shape.
Her reason for not wanting to go to "our" home and spend 3-4 days at a time every couple weeks or so, is that she feels she is intruding on my husband's and my time together -- that we should be able to spend our time exclusively with each other without needing to do things for her and so forth. My point back to that is that while of course "alone time" together is important, it's much more important for my husband and I to simply be able to see each other in the first place. We aren't social-social people, we are content just being in the same room together and having conversation, enjoying a movie, interacting with the pets and so on. She's not an interference with that, so her feeling that she's a problem is in her own mind.
As far as needing to drive an hour to her doctor/s ... her doctor for over 20 years used to be in her town, but he took a position with another practice about 2 years ago, so now it's an hour drive to see him and she doesn't want to change doctors. Her kidney doctor is an hour-and-a-half drive, and there is no kidney specialist in her town.
I should add that both her CHF and kidney issues have been under good control. She takes 1/2 of a Lasix pill per day which is enough to keep her from putting on water, so her lungs have been clear for months and her legs do not swell. Most of the problems I am seeing with her are likely to be anxiety-related, and I will be talking with her doctor about the possibility of an anti-anxiety medication ... she is due to see him soon.
IMOP, the only true faking going on in my family that I have observed,
are those faking wellness.
Despite other comments, I think you should give yourself break on this. None of us is perfect. Sometimes, the people we care for forget that our sacrifices allow them to stay at home in their own environment with their pets and things. You shouldn't feel guilty because this one time You had to take care of your family members (pets are family too) which inconvenienced her only slightly. I believe it is possible she was faking. You are with her 24/7 all but a smattering of days of the year. You know her better than anyone and you should trust your instincts. Ultimately, this is going to turn into a situation of whether it is really worth making a big deal of it...a pick your battles moment, so to speak. Will bringing it up just cause you more grief in the end? You have sacrificed a lot for your mom. I would give yourself a break from feeling guilty over this situation. You have responsibilities to your family too. You did the best you could given the situation. Sure, you forgot the O2. But you are human and you are entitled to make a mistake. It wasn't intentional.
Sometime between now andd 100 (or 101, or 112) things are going to change. They are changing now, but by small degrees.
I heartily agree with those who have suggested getting a private caregiver for the times when you go to your house. It's likely to take a while for her to adjust to a "stranger", but stick to your guns. What happens if you or your husband get sick? Repeating the "it's my life too" sentiment from above-- it's YOUR life and your HUSBAND's life as well. Is there any reason (other than Mom not "wanting" to) that you have decided to maintain separate households? Is there a reason she can't live with you or that you can't live with her?
Also wanted to mention with CHF sitting for long periods with legs down can be painful as the fluid pools easily in legs I know that is a problem for my mom. I think when people get older they do fake something because something is bothering them and its their way of controlling the situation, they have so little they can control. Don't know if mom was or not but she is trying to tell you its time for her to stay put. I wish you the best, again thanks for caring enough to be there for mom.
Being of a passive-aggressive/narcissistic/borderline personality type does not protect one from experiencing the common symptoms of severe heart failure. The symptoms are unpleasant. Are you saying that the person owes it to our peace of mind to bear them stoically and in silence if she can?
I agree with you, though, that it is pointless to pay more attention to a problem than will actually help it; so I agree with you that not acknowledging, and thereby cultivating, your aunt's vocalisations was the right course of action. I'm not so keen on pejorative terms like "faking" and "lying." The question isn't whether the person is really in pain or is milking it a bit, the question is whether there's anything you can sensibly do to alleviate her discomfort or discontent. If there is, and it's a reasonable ask, do it. If there isn't, or if she thinks there is but it's nonsensical (such as never leaving the house because she can't bear you to be absent for five minutes, which has nothing at all to do with her physical needs), then don't - with a clear conscience.
The conditions the OP's mother is suffering from don't lend themselves to a doctor/no doctor decision. They go by small incremental deteriorations, which sooner or later no medical intervention will be able to help, unfortunately. But the fact that there is unlikely to be much point in taking her to ER or her GP doesn't mean she doesn't feel ill. Doesn't mean she's not in pain. No matter how manipulative she has been by habit, at this point in her life she needs gentle handling and encouragement, along with an acceptance that she isn't going to be able to cope with as much activity as she used to. Go easy on her.
She lies just like a child, fakes pains etc just like a child. When she first moved in she moaned "in pain" all the time when I was in the room with her. But when I left the room, she stopped. I know because I stood just behind her chair for 10 minutes at a time to find out. When I stopped acknowledging the moaning, she stopped moaning. I have learned that sometimes I just have to take care of myself and she has to accept it. And she has accepted. My Aunt tested my boundaries and when I held firm she stopped testing them. You know, as long as you are at home one-on-one with her she gets all your attention. If you go to your house, she has to share you with your husband and dogs. Perhaps it's time for you to set a boundary. Take your Mom to the doc to be certain all is well. And, assuming you get the green light, pack her up and take her to your house. I like the idea of doing something special for her to make it more fun or something she can look forward to. I've done that a couple of times. I absolutely LOVE my Aunt but it is my life too. As long as I am taking good care of her and listening to her doctor I will continue to set the boundaries so that she doesn't take over and completely control my life. I recommend the same for you. Good luck.
Also think - what if something happened to you? What would she do? Would sisters step in (probably not).
You need a back up plan and starting to implement it now woud be easier for her than to make a huge change later.
As elders get older some revert to a child like behavior - if I don't get my way I will throw a s--- fit until you give me what I want. I doubt if you would let a child get away with this - harder to deal with elder, but necessary.
Look into professional care at home to give you and husband time together.
If Mom doesn't have money to pay for this and owns her home maybe an equity line of credit - or even tho I don't usually like reverse mortgages - this might be a case where it would help.
Give yourself a break (I know it seems like she won't be here long, but you never know what will happen with you and husband - tomorrow is never guaranteed).
She might just like having someone else around (pro care giver) and enjoy a break from you LOL.
I wouldn't expect her to go on any long trips. And why does she have to drive an hour to see her doctor? Are there no other doctors in your community?
I would keep the doctor visits limited and only when necessary.
I would try to arrange things to be as settled as possible. And I wouldn't try to guilt her at all.
At this phase of her life, she shouldn't be worrying about much except being content and having a nice day.
I think I would discuss this with your husband and see how that could be arranged. If there are no doctors, care provider assistants or places to help accommodate her needs in your community, then I would discuss this with her and see if she is inclined to move somewhere that she can avoid all the travel. Perhaps a private agency could help find a private person, who is properly trained and vetted to provide respite care so you can have some time for your needs.
I've read your original post a few times and noticed a few things I missed the first time around.
1. You wrote that in the last year and a half, after the hospitalizations, she hasn't wanted to travel from her house to yours. So there was some change in her feelings, perhaps some attitude that changed that she apparently didn't discuss. But the bottom line is she didn't want to do it.
2. A variety of medical issues required hospitalization, which may have changed her own perspective of her situation and in the long run could have been unsettling if not reflective of health issues which could have been a lot more serious and less controllable.
She may have felt more vulnerable because of the number of health issues that occurred. I would think that having chronic kidney failure would be a constant reminder as well of her mortality.
So perhaps she's rethinking the travel issue, not to mention just worn out, and/or thinking of the limitations of her age as she hadn't before the hospitalizations..
3. She's asked to stay at your house and look after the pets but doesn't want to. Could be an indication she doesn't want to be away from her house, doesn't want to be at your house, or just is getting tired of the traveling. Maybe she just didn't feel up to it physically.
I know from my experience it's often hard to gauge what my father's physical capabilities are. He'll generally insist he can do something even if he's tired. When he does admit he is, I know that he's REALLY serious and it's likely worse that I suspected.
4. Despite not wanting to go, she's given an ultimatum. She might have resented that. After all, she's STILL your mother. And I suspect there are some issues regarding care of the pets and/or travel that haven't been aired and discussed.
5. She then is forced to embark on a 4 hour trip, plus interim resting period, as opposed to previous 2 hour trips to your house. Double the travel time, double the fatigue.
6. She may have continued to feel pressured, resentful, who knows? And it reaches a climax as you approach your house. There may be something as well about staying at your house...mobility issue? Pets issue?
Maybe she's just tired of the travel and change of temporary home. At 95, people really tend to want to just settle down in the home they're used to.
Could be something she just doesn't want to address. I think I'd give her some very special attention for the next several days, take care of the pets yourself, and just let her work out her feelings on her own. Then when she's calm, discuss the issue and ask her how she really feels, what SHE would like to do about the travel and the pet care. Hopefully she'll tell you so you can reassure her that you're already making a lot of accommodations for her and will continue to do so but want to ensure that they're what she wants. You are already focusing your lives around her, but she may have felt that this time that attention she needed wasn't there.