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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I would try to arrange things the way she wants and keep her as comfortable as possible. Long rides, would not be a part of the plan. It's not just how far she has to walk to the care. Travel itself can be stressful for a senior. At this point in her life, I wouldn't concern myself with whether she's passive-aggressive or not. I'm impressed she did as well as you describe.
Why you would move to take care of parents and yet move two hours away is beyond me. However, it is what it is. Your mom has no choice in the matter. Insist she go to your home several times a month. Unhappy or happy makes no difference. She WILL adjust. Give her a present or two pretty wrapped when she gets there...her favorite food for meals...wouldn't surprise me that she would begin looking forward.
Your hubby is an angel-boy. I'm quite sure this isn't how either of you pictured your retirement. Before I'd do what you're doing, I'd sell mom's place and move her in with me...or vice versa.
I don't believe she had a TIA -- used to know someone who got those, and this was not like that ... Mom didn't lose control of the use of her hands, didn't slump over, and didn't pass out. She put her sunglasses in her purse, and told me 15 minutes later where she put them, so obviously she didn't have "amnesia" about that.
I've been trying to find someone or some place local to help with 24/7 respite care, but so far no luck. This is not a large town.
It is a shame that you and your husband can't stay together and do things together. There has to be a better answer that would give you some more time for yourself. It might be expensive, but I have a feeling it would be worth the extra cost.
We just went through that when my father had an episode. I think the need for oxygen during the day had been increasing but reached a more critical level after doing laundry. The laundromat was hot, we're always both tired from being there. Suddenly he was really having trouble breathing.
It can also happen with anxiety; I learned that from nurses over a decade ago.
Perhaps your mother was upset, perhaps there was more humidity, more sand/dirt/ whatever, but I wouldn't definitely not question someone's need for oxygen, even if you thought she was faking. It's too critical an issue to take a chance.
If you carry a pulse ox with you, you can check it; that's a better way to check for sure. There was a reason she was scripted for oxygen 24/7; under Medicare guidelines, it won't provide oxygen for 24/7 if it's only indicated through testing for night use.
So at one time she did need oxygen during the day; those circumstances may have arisen again.
And always carry oxygen; when I had to for my father over a decade ago, I always took 1 tank for use and always 1 and sometimes 2 backup tanks. I wouldn't take a chance with someone's health.
I hate to sound harsh here, but I cannot believe you wanted your Mom to take care of the pets. My parents were always my pet sitters but once they started their age decline in their late 80's I stopped asking them to help. Even though they were in good health, before using canes and walkers, it still was too exhausting, and too worrisome. I since paid pet setters to come in to help.
I agree with Jessie above, your Mom had a panic attack. What you describe happens to me, too. It does make you feel faint, but bending down to put your head between your knees doesn't help. A panic attack goes away on its own in about 20 minutes, but its a loooooong 20 minutes and you feel like you are going to die.
Re the pets -- I didn't ask her to take care of them, I've never asked her to take care of them. We have some pets in her home with me and her, and some with my husband at our place, and I take care of them all. One is a little dog who is hers and also a parakeet that is hers, I do all the caretaking of them as well.
As far as travel goes, Mom's doctors are all at least an hour's drive away and she has no problem with that, or with getting in the car and taking a nice long drive just to "get out". She always enjoys the drive up to our house and back, the clouds and changing scenery, etc.
If I'd remembered the oxygen, I would have taken it AND had her hooked up, but I simply didn't. I doubt it will slip my mind again, though, irrespective of what I think about yesterday's situation. Of COURSE her health comes first.
Panic attacks can out of nowhere, or something had triggered it, your Mom might not even know what the trigger was. It is something to watch in the future to see if she has any similar panic attacks, hopefully it was her one and only.
Also, when she gets her pacemaker checked over, the other thing you can look at is episodes or events. The clever little beasties actually record things like A Fib down to the date - again, just ask the technician whose doing the checks.
The reason I suggest these two objective measures is that I remember well how incredibly frustrating it is when your mother 'coincidentally' has a funny turn just as there is something important to get done; and I personally found it helpful to have chapter and verse on what exactly was going on with mine. It also helps, I think, to have a handle on how badly her CHF will be affecting her. The level of fatigue might be very severe indeed. Renal failure makes you feel like poo, too. Your mother isn't necessarily just being a giant wuss when the fancy takes her.
But actually, it doesn't take much to wipe them out. Whether they're able to continue with the important thing once wiped out will, of course, depend to extent on how motivated they are to get it done. For example, my mother managed to be a complete trouper on the day we went on her VIP trip to a safari park; but she took a week to get over it, for one thing; and for another I blushed to my roots when the cardiac physiologist four months later identified that date as an "event." Other event days included an abortive cataract surgery, her birthday party, and an entire week when she had A Fib *every single day* which I won't go into because I'm still too upset and angry to talk about it sensibly.
TIAs, by the way, can affect any part of the brain and won't necessarily show any of the classic signs. You can get 'flat affect' as seen in depression; you can get nominal aphasia, visual disturbances - I suppose, in fact, when you picture blood flow to the brain, it makes sense that you can get a disruption in any function that is controlled by the brain, which means absolutely anything. And since, with CHF, what you're talking about can be as simple as poor or restricted blood flow, rather than a blockage as such, temporary or otherwise, the effect can be mild, severe, transitory or longer lasting. Think of a sponge that isn't get wetted evenly or thoroughly enough.
Um. I don't want to be a doom merchant, but you don't mention it: has anybody said anything to you yet about vascular dementia?
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.
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.
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.
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.
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.
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.
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?
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.
IMOP, the only true faking going on in my family that I have observed,
are those faking wellness.
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.
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.