I fear my Mom is slipping away and I feel.....I'm not sure what I feel.

You are allowing a person with dementia to make choices. You ignored the MD and let her have her way when she played the guilt card. Try to backtrack a little, work with the MD. She's not a candidate for Assisted Living if she can't get out of bed. She needs 24/7 care and that means a nursing home. Support the doctor's decisions and he will help you.

I bet you're angry and sad, both! Why is Mom insisting on making this so hard for you?

It may be time to have a worst case scenario discussion with her. Ask her how she liked being stuck in bed all day? What if you hadn't called her? Maybe you had plans for the evening, and didn't check in until noon the next day? What if she fell and broke her hip and lay there for over 24 hours before getting help? How would she feel about that? How does she think YOU would feel about that? Play up how unhappy you are at the idea of her getting hurt or lying there in pain for hours.

I think she may be off today just from the stress of the day's incident. I would expect her to bounce back after a night's sleep. If not, do get her to the doctor. She won't live forever, but there's no need for her to suffer from a UTI.

your mother could obtain a springing poa. its only in effect if shes incapacitated. i wouldnt want my kids to have poa without protective limitations. one would buy a monster truck and the other a monster bag of weed.
your mothers agitation likely comes from losing control of her life and surroundings. even if its not true let her believe that shes calling all the shots. you can lead while your following if that makes any sense.
she is slipping away and theres little you can do aside from keeping her comfortable and safe.

pstiegman - I don't know if she has dementia or if she is making intentional choices. She has always had to be in control- her way was the only way. This pattern hasn't changed -- only now her way isn't the best way (at least in my opinion). She is able to get out of bed on her own most of the time. In the past 30 days, there have been two instances of her being unable to get out of bed by herself. I think having her declared incompetent would destroy her and cause her to give up.

Jinx4740 - I've been told by others that she suffers from a narcissistic personality disorder and has been suffering from it for years. Her friends have admitted that she has always controlled me by using guilt. Being the only child (son), and having no siblings and no living relatives means that I have to step up. She didn't seem bothered by the urine -- I guess that since it only came out when she moved, her body heat kept it warm and she didn't sense the extent of the leakage.

As for wondering how *I* feel about things, that doesn't enter into her equation. She expects that as her son, it is my responsibility to help her. She said that if she really DID need help, she would ask for it. She went to an OB/GYN doctor on Friday and they found 2 masses in the vicinity of her ovaries. She has an appointment with the oncologist on Friday.

Tonight's challenge is just to get sustenance into her. She barely touched her supper (after not eating all day), and I'm having to PUSH her to drink some Ensure and some V8... every time I ask her to drink it, she says "nag, nag, nag.. I'll drink it when I'm good and ready"

(sigh)

Captain - thanks! A springing POA.. I've never heard of that. She is VERY, VERY secretive about her finances and doesn't want to give ANYONE that level of control. I'll see if I can get one of her friends to suggest it.

a social worker in a hospital was able to convince my mother a few years ago that she must get some kind of poa arranged because when it became necessary it would be too late. it was self fullfilling advice. mom was hospitalized with a heart attack 15 months ago and it indeed would have been impossible to conduct such business at that point.

Captain - it sounds like I am following the same path you've walked. Just coincidentally I reached out to an elder care agency which does independent evaluations, and coordinates the various services if the candidate/family agrees with them.

My mother has Borderline Personality Disorder, narcissism and now paranoia, which, apparently, is linked, at least in part, to a pretty significant loss of short term memory - a loss which is continuing. My mother is 101 and needs to be in control and always has. It is part of the personality disorder. It sounds to me like your mother is on the slide of short term memory loss and accompanying paranoia which is fairly common in the elderly.
My mother was diagnosed borderline competent after trying to fly across the country last summer without proper ID and without notifying anyone where she was going that she was coming. I don't call that competent. She is starting to lose or misplace money and other things, forget her PIN number and even gave her credit card number out on the phone, but thankfully realised it was a mistake and went to the bank and cancelled her card. It is the grey zone between competency and incompetency. It sounds like that is where your mother is, or perhaps she has crossed the line.
Thankfully, in my case, a few years ago, at the urging of her financial advisor and my honest reassurance that I had zero interest in taking over her life, but would be there to do what was needed when it was needed, mother appointed me EPA (enduring power of attorney to manage her finances which was active immediately) and agent for her personal directive regarding her medical treatment, where she lives etc. The personal directive comes into effect after she is declared incompetent by a physician. The scenario we used was what if she had a stroke, which affected her severely, and no one had been appointed to look after her affairs, she would be in a mess. I am in Canada so our terms/arrangements are a bit different. The springing POA sounds good. To activate it your mother must be declared incompetent. You need authority in both her finances and her care/treatment.
In my case, staff in mother's ALF and a few other professionals who deal with her, and I, are in agreement that mother has crossed the line and is no longer capable of making decisions in her best interests. That does not mean that every decision of hers is not in her best interests but that she has made enough bad decisions that could have caused her harm - or that is my way of describing it.
You are concerned about having your mother declared incompetent and her having a strong emotional reaction to it. My concern for your mother, and I think it should be yours, is whether or not your mother IS competent and still making decisions in her own best interests. To me she shows that she is not that capable. This will only get worse.
The ALF where my mother lives is in the process of watching her carefully in order to get the evidence needed to get her declared incompetent by their physician - for her own good. There is no way she would agree to go for an assessment. Will she have a strong emotional reaction to it? Yes, she will be furious. Should that stop me from pursuing the assessment? Clearly "No". As far as her finances as, I simply watch her accounts and so far they are in order. The time is coming when she will no longer manage her ATM debit card, and possibly her credit card, due to short term memory loss, so I will have to step in more. Will she be happy about it? No. Is it my responsibility to do it? Yes. When you are brought up by a person with a personality disorder you are more concerned about pleasing them than is healthy or good for them as they get older and more incapacitated. Do you get my drift?
You sound like you have a good head on you and have survived the narcissism pretty well. Your mother needs an evaluation and a care plan put in place. I understand that if she goes into hospital for some ailment, they do not have to return her home, but do have to place her in an appropriate facility. She does need you to take more control, as difficult as that is, and believe me I know as I am in that position, and also dealing with a sibling with similar mental problems who is, of course, siding with mother. You might ask her doctor, social services, the local agency on aging, an elder lawyer, whoever you think can help. I have made a lot of phone calls this week, learned a lot, and think we finally have a plan. Coming to this forum was a good idea –do keep coming as likely the road will not be smooth.
These stubborn old people are extremely difficult to deal with even when it concerns their health, safety and wellbeing. It is not your desire to take away her independence, but to see her properly looked after and situated. Unfortunately life - her age - is taking away her independence. Good luck to you and let us know how it goes.

Posted about the same time you did. Sounds like you are on the right track. :)

So, to recap:

Your mother has lived independently up until 6 months ago – without requiring any support from you, or actually with quite a lot of help?

Do we know what caused her to fall on the three occasions since then?

Why, specifically, did the doctors recommend a rehab facility? What treatment would she have received there that hasn't successfully been provided at home?

Can you manage your “evening shift” all right, or is it too burdensome mid- to long-term? I'm just asking, not criticising.

Because it seems to me that your guilt – I understand, you feel terrible – is centred on one isolated occasion when a plan fell through. But what's the big deal? So next time you'll know to check. An unpleasant experience for your mother, made you feel awful too, but a) really not your fault and b) no lasting harm done. I'd be more interested in finding out where the break in communications happened that meant the aide didn't turn up as arranged, and putting that right.

I also completely understand your frustration – with my mother, who however is in early dementia, the refusal to use her alert nearly drove me to drink. As I said to a care manager “My mother wouldn't ask for help if she was on fire.” It was at its most stressful for me when my mother kept telling me she “didn't want to bother me.” Magically, once I realised that the truth was she didn't want me bothering her, it all made a lot more sense.

It may be that your mother is slipping away. She's in her 90s. She's entitled. Why does she have to do it in a nursing home instead of in her own home, as she has always wished?

The thing is, if you were getting to the stage where you'd had enough and you wanted to be allowed to let go gently, in peace, how would you handle it? Give POA to someone whose natural concern would make her whisk you off to an institution? Stir up a fuss with the neighbours when you didn't feel any real need to do so? - and she was right, you know; there wasn't any real need. Different if she'd fallen or been taken seriously ill, but she just needed to go – it could wait.

I don't think your mother is showing signs of dementia. I think she's tired, and very, very old. Is it impossible, in the practical sense, for you to let her do things her way?

Sb, I'm sorry, I missed your second post. Two things:

1. You say: "She expects that as her son, it is my responsibility to help her. She said that if she really DID need help, she would ask for it." You say she expects one thing. She says - not quite the opposite, but not at all the same thing. Well, which is more true? I'm not sure it's her expectations that are the problem. I think it might have more to do with your very understandable anxiety. But, really, take her word for it. Be there as much as you - and I do mean you yourself, not your mother as far as you can gauge her - can, want, need to be. Don't beat yourself up about not being there when she hasn't asked you to.

2. If the ovarian masses turn out to be bad news, LISTEN to her wishes. If she wants to come home, let her come home.

I do apologise for having assumed above that you were a daughter, not a son: very wrong of me.

cm - in the US I believe that someone who is seriously ill cannot be released to their home unless there is approved care in place, I have been soundly reminded my mother's lawyer of my responsibilities as EPA and potential PD .

I agree with Countrymouse. Your mom is in her 90s. (Mine is too.) Our moms are going to die, probably within the decade, and perhaps sooner. Nothing we can do will prevent that. Naturally we want them to suffer as little as possible until then. But not everything is within our control. One thing that can help is seeing that she has in-home help. You have seen to that. Mother accepts that. The morning aid did not show up one day. This was not your Mother's fault. Perhaps in the future you will call the agency if the aid is not there when you are expecting her, but her missing a day was not your fault.

Your mom has always been in control. Let her stay in control. If she does need more in-home care in the future, let her control that as much as she can.

Do you admire your mother's independent spirit? Tell her that. Are you glad she hasn't just given up, and she is still trying to cope on her own? Tell her that.

I am sure there are many of your mother's traits you do not admire. You are certainly not going to change your mother at this point in her life. Spend this time maintaining a meaningful relationship with her.

It must be awful, terrible, horrible, and no-good to be a strong-willed, independent person and suddenly not be able to get out of bed. Poor thing. Nothing to be gained by lecturing her or figuring out whether she peed or leaked. Assure her that if she ever does need help, or even if she just wants to talk about whether she needs help or not, you are available to her. Make it clear that you don't want to bother her and that you are available to help.

Good look with this challenging situation.

Good, Emjo! I hope that happens according to the spirit, as well as the letter, of the law - round here we hear too many stories about 'home from hospital' discharge plans being marvellous works of fiction. Expensive, of course; but it sounds as if that wouldn't be a problem for sb and his mother, judging by what's already been happening?

I'm assuming that the practical bases can be covered. What remains is how to make those very difficult decisions about treating/not treating, and where. Very hard on the caregiver, but - in my view - actually for the cared-for to decide, especially when her wishes have been clear and consistent.

I wholly sympathise with sb's longing to help his mother and improve her condition; I can see myself wanting to do the same; but hospitals and nursing homes are not nice places to be and the mother appears to me to know her own mind on that point.

I'm not looking forward to the time when I will have to agree that further intervention would be heroic in my mother's case. I just hope I'll recognise it when it comes and be able to get her home to her own bed, her familiar surroundings and her preferred routine.

I just found this site and signed up, and appreciate the questions and answers in this thread. Think I'm going to need you folks :) and will contribute where I can. Good luck with that new resource, sb!

Mom knows her own mind but may have a life threatening disease so the question will be to treat or not to treat. Only mom and the Drs can decide that but do not support her in a decision you feel is wrong. if she can spend whatever time she has left at home make that possible if you can. Consult hospice now and they can better explain your options and the likely course of the disease. Mom probably won't agree to see them but she can't stop you having a discussion in their office. if he opts for surgery and chemo it is her choice and so be it. Many oncologists are very aggressive and not always totally honest about the prognosis hey hate to have what they see as a failure. This will be very hard for you but without POA all you could do is seek guardianship and time may be short to go that route. We'll be thinking of you. keep posting your experience help others.

My mother's been fiercely proud of being at her age and still managing her own affairs, driving when/where she wanted to go; independent to the extent of her physical capabilities. (gardening, but no heavy yard work)

Her first fall was caused by attempting to pick up her significantly overweight dachshund to put him on her bed and she lost her balance and fell on her buttocks. No broken bones (Thank God!) but significant bruising. It was at this first instance that her doctor recommended she go into a rehab facility -- but she refused, so after her stay in the hospital, we had in-home therapy and nursing 3x a week, and a nurse's aid come in from 7:30-5:30 and my shift was 5:30 - 7:30.

The second fall was in church, where she fainted, breaking a wrist and a few facial bones. Again, the same routine: hospital stay, followed by in home care 24/7

The most recent fall was happened when her cane got stuck on the corner of a cabinet at her hair salon, where she broke a wrist.

Each instance involved a physician's recommendation that she go into rehab to work on balance and general strength training. The difference between facility and in-home would be therapy 2x daily vs. 3x per week.

For me, the evening shift is what it is. I'm fortunate in that my employer and co-workers are fully aware of the situation and very understanding. Do I like the interruption in my life overall, having to do my own laundry, pet care, meals and such on the run? I'll be honest-- it wouldn't be my first choice, but I'm managing.

As for the guilt, I've had a discussion with the nurse's aid. Any time she will not be during the day shift -- either because of personal reasons or because my mother told her not to come, she will call me. The break in communications was that my mother told the aid she could have the day off -- but she told ME that the aid would be there.

I think my mother's desire is partially fueled by vanity and a need for privacy. She doesn't like NOT being in control, and she's highly frustrated that she has to depend upon others for things she was quite capable of doing on her own just a few months ago. I get the "I didn't want to bother you" routine almost daily -- but it's issued more as a guilt trip than a desire not to be bothered. (It was one of her friends who pointed out the guilt stuff to me)

In a nursing home, she would be fed, medicated, and given therapy according to the assessed daily needs. At home, she chooses what she wants to eat, and when she doesn't feel like eating, she doesn't -- her primary care physician is concerned about her continued weight loss. For the meds, it is a matter of "take 3 of these daily, take 4 of those daily..etc., until the next office appointment.

By the time I get to that stage, I'm hoping society allows us to die with the dignity we afford our pets.

My mother's neighborhood is very much like they were depicted in Father Knows Best and Leave it to Beaver -- except none of the women wear pearls and high heels when they vacuum the house. Seriously though, the older women in her neighborhood look out for one another.. if one is going to the market, she'll ask the others if they need anything.

Of course she's tired, and very, very old....But I think the bell curve is very much in effect; we start this life being dependent upon others, we grow up, and eventually -- either from physical or mental frailty -- leave this life being dependent upon others.

(Incidentally -- as I was typing this, my mother dispatched me to go into her room and get something for her. I asked her if she was able to get it herself and she said "yes... but you're here, so I asked you." When I suggested she do it herself, to get a little extra exercise in today, she got up out of her chair and did it herself.)

If an oncologist attempts aggressively to treat significantly advanced ovarian cancer in a nonagenarian, he should be struck off. Sb, I sincerely hope this part of the discussion will prove irrelevant; but in case it doesn't, and you find you've got a gung-ho oncologist on your hands, insist on a second opinion from a geriatrician without delay. Ideally, find one you like the sound of now and brief him/her in advance.

Oh. That's a very sad "oh," by the way. The weight loss doesn't sound good. Neither does Fall No. 2 (1 and 3 could happen to anyone).

From your closing paragraph, I have to say your mother doesn't seem to me to be trying to lay much guilt on you - or at least not very successfully, QED, which is about as healthy as it gets. Guilt is a futile emotion. Either you're doing everything you should be (and you most certainly are) in which case it's nonsensical; or you're not, in which case it's your mind's way of telling you that you should get your finger out and do something about it. Don't confuse the appropriate, natural anxiety and frustration you're feeling with guilt. Your mother seems from what you've said about her to be the opposite of a manipulative drama queen. She's not behaving like this to make your life difficult. She just wants to get on with it, with as little interference and intrusion from others as possible: completely according to character.

I wish you both all the best, and will hope for positive news.

Sorry, forgot to say - with the wrist fractures, they're keeping an eye on her haemoglobin levels are they? I'm sure they will be, but…

If she got anaemic that would contribute to her fatigue and frailty. Worth asking about, but not worth worrying about as long as you've confidence in her doctors.

if your mother is dropping weight she may be declining. dying with dignity to me means letting her make her own decisions and try to keep her as safe as you can. falls are going to happen. its declining mobility and body strength, not shoddy caregiving. my mom refused surgery, exploratory or otherwise on a sinister looking kidney mass. as i read on the subject i found that surgery for such a condition on someone her age is futile and just not recommended. so in hindsight she made the best decision even if it sounded crazy to me. you dont get to 80 or 90 yrs old without aquiring some wisdom.

There is so much great insight on this thread. As someone with a non-severe but def. borderline mother, I'm going to agree that sb's mom might only be stubborn and proud. :) However emjoan's words ring for me. Great that the lapse in communication w the caregiver is now solved. I love the insight about anxiety and frustration not being the same as guilt! Gosh, my mom's only 81, you guys have some real oooold mothers! I'm going to discuss the POA thing with mine. About the bell curve (arc), are these women (notice how few posts on dads there are here?) just enjoying being like child brats again... or maybe for the first time, they were seen and not heard as children so want their last waltz. It'd be great to not be so p&ssed at my mother's attitude - I get called controlling all the time. Would love to laugh it off. We can't engage with this like it's a rational interaction, is that right?

Zdarov, I think that with dementia, elders get into a survival mode. They get to be really self-centered because they are so afraid. Of course it makes us angry, though.

Try to let it roll off your back as much as possible. Remember she is a pitiful old lady, even when she's cussing you out or pulling your strings and pushing your buttons.

Feel free to come here and complain. We get it.

The best thing to do now would be to move your mom to an assisted living home where she will be taken care of 24/7. Even you would get time for yourself that too without worrying for her. My grand mother was recently moved to Luvida memory Care and trust me it was the best choice I made for her. She enjoys the company of her fellow residents there and her personal hygiene is also well taken care of.

We went to the OB/GYN oncologist today. After examining mom, he recommended surgery to remove the ovaries and tumors in the hope they are the cause of her abdominal pain. The good news is that his best guess is they are not cancer -- but of course he can't say for certain until they've been sent to the lab. He explained the risks and potential benefits of the surgery and she's decided to go through with the procedure, which will be done on an outpatient basis. Mom was HOPING for a clean bill of health today and I think that even though she maintained a stiff upper lip, the lack of that clean bill of health and anticipation of the surgery next month has her somewhat shaken up (which I think is perfectly normal).

What isn't normal is what happened this evening. Mom seemed stable in the afternoon and said she'd like to have the house to herself for a while so she could just relax. I reviewed the evening schedule with her, laid out her pills, and made sure she had a sandwich in the fridge in case she got hungry before I came back to her house. A couple hours later I called to tell her I was on the way back and ask if there was anything she needed. She said she was very tired and was on her way to bed. Shortly after that call, one of her friends called me. She had just spoken with mom and said she just didn't sound right.

When I got to her house, she had already changed into her pajamas and was in bed. I asked if she ate the sandwich and she said yes. Then she uttered words in the form of a sentence -- but each word was gibberish. When I checked in the fridge, I found the sandwich still wrapped and untouched. I asked her some other questions to check her comprehension and verbal abilities. Except for 3 instances of using a word that didn't fit in the sentences, she seemed coherent, lucid and able to follow the flow of the conversation. The earlier gibberish and those 3 wrong words had me concerned so I called one of those 24/7 ask-a-nurse lines. The nurse talked to my mother directly and, for the most part, her responses were logical -- but again, she substituted a few words with random words -- unrelated to the conversation. The nurse recommended calling 911 and getting her into the hospital for evaluation -- but mom steadfastly refused, insisting she was perfectly OK and that I shouldn't worry. With that said, I ended the call with the nurse.

After the call, I explained to mom that it was possible she had a mini stroke and she might not even been aware of it. She insists she's fine and reiterated her absolute refusal to go to the ER tonight. I told her I was worried about her and *I* would feel better if she got checked out. She told me she was fine and to go to bed.

Each time I go in to check on her, she seems fine and resting comfortably. My dilemma is deciding whether to follow the nurse's recommendation and risk being subjected to mom's wrath for not abiding by her wishes and forcing her to go to the ER -- or just take her at her word and hope she is OK tomorrow morning. In my head, logic tells me that this new symptom of random word selection could be significant -- but it is also possible that the stress of going to the doctor was just too much to bear and THAT is the source of the problem.

Has anyone else faced this issue of a parent exhibiting a symptom which could be indicative of a new problem developing -- but the parent absolutely refuses to go to the ER? If so, how did you handle it? (I know it is too late for THIS episode, but if it happens again, I'd like to be better prepared.

Thoughts?

I don't blame you for being worried. If she were 50 or 70, I would have her in the ER so fast....

But she's in her 90's. Something is going to get her, and it won't be that long. Maybe 5 years, maybe more. If she has had that small a stroke, could they really do anything about it? They would keep her awake all night and stick needles in her and ask her questions. She has told you what she wants, and I think you would be wise and kind to accept her verdict.

If she were spouting blood or in pain, that would be different.

It's so hard, especially when it's not clear what is the right thing to do. God bless you with a good night's sleep.

SB, that sounds a lot like a small stroke, and speaking for myself I marched my mother straight to the car and down to ER in spite of her inability to understand what was wrong or why I was worried.

Jinx's point is a good one, but your mother's got a good a chance of becoming physically and/or intellectually disabled unless she gets diagnosed and treated. The ER would need to check whether the stroke/TIA is caused by a clot or a bleed. If it's a clot, she should be on (temporary) aspirin and long-term Clopidogrel to prevent another, but that would affect the surgeon's plans (the surgeon needs to hear about all this anyway, very important). If it's a bleed, and she's already on anti-platelet meds, they'd need adjusting.

This is likely to happen again; when it does, it's straight to ER. Meanwhile report exactly what happened to any doctor she comes into contact with. Best of luck x

First of all, you can _never_ trust an aid. That's why most of us do what we do. Always follow up. But you have learned that lesson, I'm sure. Don't indulge yourself in a guilt trip. Caregiving for those of us not trained in it is a learning experience. You can't and shouldn't expect to be perfect at it. You do the best you can.

Re the sleeping/resting eyes--it's normal at that age/stage. My mom's doing it to. Older people seem to rest/nap a lot, perhaps because they don't sleep as well at night.

Re the POA--you need to arrange for your mother to meet with an elder law/wills and estates attorney. He should be the one to explain to her the pros and cons of a POA, and create one that ensures her protection. Not having one is irresponsible of your mother, to both herself and you, and it can make your life hell when you really need it and don't have it.

I disagree with at least one of the posters here--your mom sounds like she is doing fine at home, as long as she has someone there with her. She does not need an aid, but she may need you to go with her to doctor appointments so that you an monitor her care. I feel like people go to nursing homes to die/deteriorate. Being in one's own home is such a benefit. to one's mental and physical health Keep her there as long as you can/it is safe for her.

I don't know much about the personality quirks but I think it's pretty normal for aging people to get frustrated/irritable/ungrateful with their caregivers. It seems to pop up a lot on this site!

Other than that, you just have to learn to take each day as it comes, I think. It's tremendously difficult watching someone effectively fall apart. I've been doing it for 1 year and 2 months and I still have nights where I curl into a ball and bawl. Sometimes thinking of it as a process, the same way growing up is a process, helps me keep things in perspective. Good luck!

Oops! Should be: she _does_ need an aide.

Just read sb23508's second post...I have to agree that vanity and pride play a big part in the behavior of many aging people. But I can understand it. Also, I think you're doing the right thing to make her do stuff herself. I try to do that as well. Sometimes before meals I make her go for a walk in the apartment since she doesn't get enough exercise and I'm concerned about maintaining her limited mobility. All of these little things count.

Re your 3rd post, it sounds like a stroke to me as well, one that would be treated with a blood thinner. I'd take her to the dr. for an MRI, even now. They might recommend her being on blood thinner (though maybe not since she's a fall risk--clearly talking to a doctor is a good idea!).